Kidney Disease Support

Question:

1. Are there any symptoms which always or almost always occur when one has a kidney infection?  (Will a patient always or almost always have WBC’s in their urine and urinate much more frequently / have a fever if they have a kidney infection?) 2. Should one see a urologist or a nephrologist (or someone else) if they suspect they have an infection? 3. How long after the onset of initial (mild) symptoms does it take for more severe symptoms to develop? 4. Are there any homeopathic remedies for a kidney infection?

Response:

Nothing that I know of that is homeopathic that will cure an infection. Although cranberry juice is supposed to help keep them from developing. Yes you should always see a doctor immediately if you suspect you have a kidney infection.  They can turn quite painful and cause permanent kidney damage if not treated. I’ve only ever had one and the first sign for me was the urge to urinate frequently and it was irritating not quite painful right at that moment. The doctor at the dialysis unit told me to go home and wait a few days.  I told him straight out I’m not waiting till it gets worse, if you don’t check for it now I’m leaving here and heading straight for the emergency room. When it turns out I’m right you are going to be in for it with the director. I’m one of those people who when I get ane infection it spreads like crazy so I push the issue rather than take a wait and see approach.  Which is something you have to do with some doctors.  They don’t always like you for it but you are the only one who knows exactly how you feel. Celeste "John A Clark" <johnacla…@hotmail.com> wrote in message news:ba16500d.0406160532.11bb17ce@posting.google.com… – Hide quoted text — Show quoted text -> 1. Are there any symptoms which always or almost always occur when one > has a kidney infection?  (Will a patient always or almost always have > WBC’s in their urine and urinate much more frequently / have a fever > if they have a kidney infection?) > 2. Should one see a urologist or a nephrologist (or someone else) if > they suspect they have an infection? > 3. How long after the onset of initial (mild) symptoms does it take > for more severe symptoms to develop? > 4. Are there any homeopathic remedies for a kidney infection?

Response:

In article <ba16500d.0406160532.11bb1…@posting.google.com>,  johnacla…@hotmail.com (John A Clark) wrote: > 1. Are there any symptoms which always or almost always occur when one > has a kidney infection?  (Will a patient always or almost always have > WBC’s in their urine and urinate much more frequently / have a fever > if they have a kidney infection?)

Symptoms of a kidney infections are: flank pain; fever and chills; nausea and vomiting. A dipstick urinalysis will be positive for nitrites, WBC and sometimes RBC. Lower tract symptoms of burning pain while urinating, feeling of pressure and urgency, and frequent urination are almost always signs of a bladder infection. A bladder infection that is not treated may spread to the kidneys, especially in those with chronic illnesses. > 2. Should one see a urologist or a nephrologist (or someone else) if > they suspect they have an infection?

A specialist is not necessary. One should see a family practioner or internist. If the kidney infections are recurrent, a specialist might be needed to find out why; there may be an underlying condition (such as undiagnosed diabetes that has caused neuropathy of the bladder, leading to frequent bladder infections that then spread to the kidneys). > 3. How long after the onset of initial (mild) symptoms does it take > for more severe symptoms to develop?

Hours. > 4. Are there any homeopathic remedies for a kidney infection?

Only if you wish to die. Homeopathy is useless for real infections. — "Did Father shoot him? I will eat Grandfather for dinner." – Helen Keller, on learning of the death of her grandfather

Response:

John A Clark wrote: > 1. Are there any symptoms which always or almost always occur when one > has a kidney infection?  (Will a patient always or almost always have > WBC’s in their urine and urinate much more frequently / have a fever > if they have a kidney infection?) > 2. Should one see a urologist or a nephrologist (or someone else) if > they suspect they have an infection? > 3. How long after the onset of initial (mild) symptoms does it take > for more severe symptoms to develop? > 4. Are there any homeopathic remedies for a kidney infection?

Ok here’s what I found after looking up info: Pyelonephritis (Kidney Infection) in Adults: http://kidney.niddk.nih.gov/kudiseases/pubs/pyelonephritis/ Kidney Infection: What You Should Know: http://www.healthsquare.com/mc/fgmc0801.htm MEDLine Plus: http://www.nlm.nih.gov/medlineplus/ency/article/000522.htm Homeopathy – Kidney Infection: http://www.abchomeopathy.com/c.php/115 *THIS IS ONLY FOR REFERENCE! CHECK WITH YOUR DOCTOR TO SEE IF HOMEOPATHY IS RIGHT FOR YOUR CONDITION!!!* This info was found by typing in keywords into Google: *homeopathic remedies for kidney infections *Kidney Infections More sites/info will be found through that method. Good luck. — ~LadySycamore~ Co-Administrator dialyze.org: For renal patients by renal patients http://dialyze.org/forums/index.php El Ciberbosque: "Sycamore’s next step in the quest for world domination" http://www.ciberbosque.org/index.php These are uncertain times. Thank goodness you’re such a rock. Now don’t be mad if everyone else isn’t. You can only expect so much from mere mortals.

Response:

Question:

– Hide quoted text — Show quoted text – <snip I’m fairly certain that you will generate ketones but that is not the same as ketoacidosis. That was my understanding, I assume the many admonishments against fasting for type Is is based on the assumption that the IDDMer is on long acting insulins. This will give you a golden opportunity to totally fine tune your basal insulin doses.  Of course,  if your basal is not fairly well tuned before you start,  expect some problems.    If you don’t understand your basal now, you will after your fast.   (I don’t think many T1 really understand their basal routines) Thanks for the response.  I just wanted to make sure my kidneys wouldn’t explode after 2 days .

Keep them "liquified" with plenty of fresh water and they should be fine. This was one reason I’d like to pursue a few days of fasting.  I’m on a pump and it would be a great way to really fine tune my basals (assuming no drastic weight loss during the tuning).

That’s a distinct possibility though isn’t it? If we don’t wat, we certainly don’t GAIN weight   It always irked me that nobody would come out and say that fasting is the best way to tune your basals, but it seems rather obvious.

It is if you’re talking about missing a meal or two, but go beyond that and your body starts thinking beyond the next meal and starts taking steps to maintain itself. This is when (among other things) the liver does strange things and you’re likely to get strange rises in BG for no accountable reason. Once we get into "starvation" mode, plotting ANYTHING is going to be nothing less than guesswork.  I test ~ 8 – 10X a day, and am in good health otherwise, and was planning to use glucose as needed to prevent lows, then bolus for highs.  Anyone know of a good sugar-free electrolyte broth for fasting?

Can’t help you there Dan:-( Beav

Response:

. . .(snip). . . Thanks for the response.  I just wanted to make sure my kidneys wouldn’t explode after 2 days . This was one reason I’d like to pursue a few days of fasting.  I’m on a pump and it would be a great way to really fine tune my basals (assuming no drastic weight loss during the tuning).  It always irked me that nobody would come out and say that fasting is the best way to tune your basals, but it seems rather obvious.  I test ~ 8 – 10X a day, and am in good health otherwise, and was planning to use glucose as needed to prevent lows, then bolus for highs.  Anyone know of a good sugar-free electrolyte broth for fasting? Dan

   When you wander through the Diabetes literature,  the older books and the magazines,  you often encounter strong prohibitions and dire warnings about this and that and the other with no rationale given.  Often,  the advice doesn’t make sense when applied to folks using the more modern insulin regimes but does make sense if you assume one of the older R + NPH regimes.   In your case,  I’ll bet that if you tried something like this while on a one of those minimum-number-of-injections-NPH-basal regimes,  you would be asking for a trip to the Emergency room about 6 hours after your whopping large, morning NPH basal shot. OTH,  I agree with you,  total fast is the best way to tune a pumper’s basal with the caveat that a Dawn Effect can be modified by the mere presence of food in your belly   (as I understand the T2-trick of "fooling" the liver with low carb snacks as a Dawn Effect/Morning Effect tool). Bernstein recommends 18 hour or so fasts for setting basals but I can’t quote him nowadays,  (I gave my copy away again). Good luck.    (No ideas here about electrolyes) Regards   Old Al

Response:

Is fasting really that dangerous for a type I? What problems can befall a fasting type I if they follow the following rules? 1) Take glucose as needed to maintain BG levels 2) Keep well hydrated and take proper electrolytes and vitamins 3) Test often I’m aware that ketoacidosis is the main concern, but as long as BG is good and electrolytes/hydration is fine, how much more dangerous is it than skipping a few meals?  I’m talking about a 1-2 week fast, not a hunger strike. Dan

Can’t answer your question, although if you google I think you’ll find lots of answers from pre-ramadan last year. And if religion is the reason, you’ll find all the majors excuse fasting on medical grounds. I can’t personally see any reason why a rational person, let alone a diabetic (either type) would fast for two weeks. But I can’t see any logical reasons for bungy jumping, or sky-diving, or taking narcotics either. It’s your life to risk. Just try not to take any others with you. Cheers, Alan, T2 d&e, Australia. — Everything in Moderation – Except Laughter.

Response:

Is fasting really that dangerous for a type I?

It depends on how long the fasting goes on for. What problems can befall a fasting type I if they follow the following rules? 1) Take glucose as needed to maintain BG levels 2) Keep well hydrated and take proper electrolytes and vitamins 3) Test often I’m aware that ketoacidosis is the main concern, but as long as BG is good and electrolytes/hydration is fine, how much more dangerous is it than skipping a few meals?  I’m talking about a 1-2 week fast, not a hunger strike.

Well if you’re scoffing glucose tabs, you’re not fasting are you? We could LIVE on glucose tabs and water if we chose to, although it’d be a boring and possibly dangerous existance. If our BG’s are where they should be, it doesn’t really matter HOW they get (and stay) there, and if we’re drinking sufficient water to keep ourselves hydrated, we shouldn’t have any problems in that area, but again, that’s not fasting. I doubt "Survivor" would allow you to have glucose tabs though cos z it’s pure food. Eat them bugs:-) Beav

Response:

<snip I’m fairly certain that you will generate ketones but that is not the same as ketoacidosis.

That was my understanding, I assume the many admonishments against fasting for type Is is based on the assumption that the IDDMer is on long acting insulins. This will give you a golden opportunity to totally fine tune your basal insulin doses.  Of course,  if your basal is not fairly well tuned before you start,  expect some problems.    If you don’t understand your basal now, you will after your fast.   (I don’t think many T1 really understand their basal routines)

Thanks for the response.  I just wanted to make sure my kidneys wouldn’t explode after 2 days . This was one reason I’d like to pursue a few days of fasting.  I’m on a pump and it would be a great way to really fine tune my basals (assuming no drastic weight loss during the tuning).  It always irked me that nobody would come out and say that fasting is the best way to tune your basals, but it seems rather obvious.  I test ~ 8 – 10X a day, and am in good health otherwise, and was planning to use glucose as needed to prevent lows, then bolus for highs.  Anyone know of a good sugar-free electrolyte broth for fasting? Dan

Response:

- Hide quoted text — Show quoted text – Is fasting really that dangerous for a type I? What problems can befall a fasting type I if they follow the following rules? 1) Take glucose as needed to maintain BG levels 2) Keep well hydrated and take proper electrolytes and vitamins 3) Test often I’m aware that ketoacidosis is the main concern, but as long as BG is good and electrolytes/hydration is fine, how much more dangerous is it than skipping a few meals?  I’m talking about a 1-2 week fast, not a hunger strike. Dan

   Ketoacidosis is caused by a shortage of insulin not a shortage of food. If you fast,  your body will convert fat and muscle into energy sources. I’m fairly certain that you will generate ketones but that is not the same as ketoacidosis. This will give you a golden opportunity to totally fine tune your basal insulin doses.  Of course,  if your basal is not fairly well tuned before you start,  expect some problems.    If you don’t understand your basal now, you will after your fast.   (I don’t think many T1 really understand their basal routines) Stock up on strips, test often,  keep good records, understand your basal insulin activity profile. Umm. . .make certain somebody is checking on your safety,  especially if you are using NPH as a basal. Be conversant with the symptoms of DKA, e.g. http://www.embbs.com/cr/dka/diagn.html "History and Physical: Patients with DKA usually present with complaint of fatigue, malaise, thirst, and polyuria. Depending on the length of symptoms the patient may be able to report weight loss. As the patient becomes increasingly ill they may begin to vomit and complain of abdominal pain. The exact cause of abdominal pain that is associated with DKA is not known. The abdominal pain is disturbing since it may be secondary to the DKA, or be from the pathologic process that initiated the crisis, such as pyelonephritis, pancreatitis, etc. Usually, abdominal pain secondary to DKA will begin to resolve with tre atment. The physical signs of DKA can be variable. Most patients will have some degree of tachycardia, but the blood pressure is often normal. Evidence of dehydration, such as loss of skin turgor, and dry mucus membranes may be present. The patient may be febrile, and extreme elevations of temperature should not be assumed to be the result of dehydration. Hypothermia may also be seen.  . ." Regards   Old Al

Response:

Is fasting really that dangerous for a type I? What problems can befall a fasting type I if they follow the following rules? 1) Take glucose as needed to maintain BG levels 2) Keep well hydrated and take proper electrolytes and vitamins 3) Test often I’m aware that ketoacidosis is the main concern, but as long as BG is good and electrolytes/hydration is fine, how much more dangerous is it than skipping a few meals?  I’m talking about a 1-2 week fast, not a hunger strike. Dan

Response:

Dan, I don’t know why a T1 wouldn’t be able to fast.  I would think that the biggest problem would be lowering your insulin to a point that would keep you from going hypo, while using enough to keep your sugars from going way too high.  You would have to be prepared to break the fast with either glucose tablets or some other sort of fast acting carbs in case of a hypo. I’ve been T1 for 21 years, but I have never fasted.  I do not have any first hand experiences to share with you. Steph

– Hide quoted text — Show quoted text – Is fasting really that dangerous for a type I? What problems can befall a fasting type I if they follow the following rules? 1) Take glucose as needed to maintain BG levels 2) Keep well hydrated and take proper electrolytes and vitamins 3) Test often I’m aware that ketoacidosis is the main concern, but as long as BG is good and electrolytes/hydration is fine, how much more dangerous is it than skipping a few meals?  I’m talking about a 1-2 week fast, not a hunger strike. Dan

Response:

Question:

- Hide quoted text — Show quoted text – Hello everyone, for a better understanding and because I have promised to share some of my own thoughts concerning inexplicable (right spelling?) bg levels, I decided to write this text. Some ten years ago, I often felt ill at work and had to see doctors. I suffered heavily from nausea and none of my doctors could figure out any reason for this. They send me to specialists who made all sorts of expensive tests, inclusive kernspin MRT and found nothing. Finally my doc had no other choice to make all blood values he knew and two das later he called me and saif that I had to come to see him. Then he told me, that he thought it was all his fault and he must have noticed the symptoms, but now I would be quite clear, because my blood values had shown that I was suffering from diabetes. He diagnosed Type-2a-diabetes and described me Metformin which I took two or three times for no good. The only thing it does, was causing diarrea. I told my doc and he said that most people he treats unfortunately react like that on Metformin. So he described me other oral antidiabetica that were supposed to decrease my bg levels throughout the day. That worked fine and after a few weeks of intensively measuring I cought the pattern and was doing well. All I had to do, was taking those pills and make every 3 months HBA1c value. On average I had 6,5, my doc was happy and I thought that it would be ok if I had to take those pills for the rest of my life. I didn’t do anything special, just forfeitet candy, colas and all this sugar-loaded stuff and felt fine. I thought that would do for the rest of my life. 8 years later I should learn how wrong I was. Just after my "Abitur" (highschool exam) which I passed when I was 33 years already, I woke up having lots of pain in my stomach, and guess what, my doctors again were clueless. I had to pee very often and told my doc that I guessed that diabetes could be the reason for that. He didn’t believe me and so I finally got into hospital were they wanted to cut out parts of my "darm" (sorry, do not know the english word, may be Alan can help me out). I refused to let them do that and went to a specialist who attestet that everything was fine. He wrote a letter for my doc and when I was again there to see him, he still refused to believe that my diabetes could have interfered in such a way. So I had no other chance any mor in order to get proof: I cooked a big meal, got my meter ready and ate. 2 hours after eating I got 440 mg/dl. With this value on the display I went to my doc and put it right under his nose. Then he agreed that diabetes could have been the reason for my pain and guessed that even some sort f ketosis or even acidosis could have happened. He prescribed me lantus and I applied it as I was told to. The day after I had bg levels of 360 mg/dl and I told my doc, that lantus, as long term insulin would not be able to control bg level rise after meals and again held him my meter under his nose. He then described me Insuman rapid and let me alone with it. All I know know about factors, insulin resistance and receptor-down regulation is not the result of the help of doctors, no, I had to figure it out alone. I startet out with 1 IU for 30 carbs which I figured out alone. Hell, the doc just said: "Why bother with factors? Just wait until you have 250 mg/dl then apply 5 IU and see whats happening.". After 6 months I ended up with 10 IU for 10 carbs. First I had an overall factor from 1-1 in the beginning then it was 10-1 at noon and 4-1 in the evenings. I then hat to take 14 IU of Lantus and more than 70 IU of insulin all day. Then I moved to live with my girlfriend and in the new town I had to search for new doctors. Most of them told me that insulin is a bodily hormon which does not any harm. They suggested that I should apply more and more insulin and to cite Star Trek with only the sky as a limit. To that point I was really tired of it and wanted to get a doc prescribing me lispro or aspart, but I dindn’t find anyone to do so. They all feared that I would get rapidly into hypoglycaemia and fall unconscious. Finally I found one and she told me over and over again how careful I would have to be with that. I knew already how fast these insulins are and was careful, very careful, but I really wasn’t prepared for that what was coming. So I sat down to eat my 60 carbs meal. 24 IU Insuman would have been the right amount to handle this, but now I had to do with lispro. The doc told me that I sould not apply more than half of my Insuman-amounts and since I wanted to be really carefull, I decided to even use less. So finally I applied 6 IU lispro and immediately the hell broke loose. I felt my bg level rapidly falling, some iron fist came right out of the blue, catched me and wanted to kill me, my eyesight started to vanish and I was close to fall unconscious. In a final effort I was able to drink some cola and started to eat immediately and in a hurry. After meal my bg levels were almost constantly at 140m g/dl not moving a single step, then after 40 minutes lispro was over and my bg levels rose up to 200. I then let my pancreas regulate it out on her own. The next day I tried it once again, first eating, then injecting lispro. This was way better, but the iron grip around me was there too and I felt unhappy with that insulin. The day after I decided to go back to insuman and ate 55 carbs meal. 40 IU Insuman was the right amount for that time of the day, well it had been. Lispro had changed my factors which I did not know, so I had an 8 times overdose and rapidly falling bg levels. In panic I drank liters of cola and ate sugar and when I finally arrived at hospital, I had 380 mg/dl and the doc was ready to give me an additional 6 IU lispro. I refused. 2 hours and 3 bananas later my bg levels werde falling again rapidly. Again cola in panic, again in hospital, again they wanted to give me lispro, no concerns about my overdose at all. They just don’t care. I then stayed over night in order to be on the safe side, but refused additional insulin. I woke up the next morning with 120 mg/dl having everybody around me congratulating for my good fasting bg values. Comments of the docs who believed I would get into keto acidosis: "Erm,

Question:

When I was in a car accident a couple years ago (and my MS made me almost completely immobile), staff from the urology department at the hospital were going to do this until their department head came along.  He told them in front of me that he thought they were only going to do this because the auto insurance company could be billed for it and they did not get the opportunity to deal with it that often .  While it may have told us what was going on, it was unlikely to be useful in any treatment in my case. My own doctor, when I mentioned this to him  later, did not see any practical application in my case from the information that would be gained. In your case, there may be a good reason.  I am listing some information I’ve found in one of my books written by neurologists which is applicable and should be of interest to you.  I am putting the reference information at the beginning so you can see it is a credible source. If I was you, I would want it explained to me how the results of the test would be of benefit in treatment rather than just being interesting.  There may be other things besides MS they want to eliminate as concerns. I would probably go through with this if bladder/sphincter problems were recent and the results could help in treatment or the doctors had good reasons for doing it such as looking for other causes. Actually, upon starting to read the information below which goes on for three or four pages I’ve changed my mind, leaning towards thinking there may be more benefit.  I still would want my doctor to explain first.  You may want to go to a library (although they probably would have to do an interlibrary loan from a University) or to a University medical library to get a copy of the book using the information below.  The more I read the, more it almost falls under the "too much information" and is very technical  - you probably would be best off to let your doctors explain it, but I included the reference information in case you wanted it.  From your e-mail it sounded like you wanted to know if anyone has gone through urodynamic testing which I have not.I didn’t mean to confuse you more.  Sorry. Larry rather than building character, adversity tends to reveal it written with voice recognition software "Multiple Sclerosis" which is written with a target audience of neurologists to up-date them on what was happening in the world up to that point. It is a compilation of most things known about MS and its treatment and management of symptoms up to 1997.  It is published by Cambridge University Press 1997.  It is edited by Jurg Kesselring (the head of the department of neuorehabilitation, Rehabilitation Center, Valens, Switzerland).  The ISBN number 0 — 521 — 48018 — 3.  I got my copy from the University of British Columbia medical bookstore. Page 103 bladder disturbances and resulting complications are common in MS and often give rise to the main problems of therapy and rehabilitation.  They may result in reduced life expectancy, and quality of life is certainly compromised by urinary tract infection worth the danger of chronic pyelonephritis and  urosepsis.  The bladder disturbances not only have to be detected in good time, but they also have to be identified precisely in order for them to be treated appropriately.  This is not possible without auxiliary diagnostic means.  In MS, various forms of bladder disturbances caused by central lesions may occur depending on the different localizations of lesions and the central nervous system.  The different forms may require different treatment modalites (see chapter 7) ……and on for a couple pages – Hide quoted text — Show quoted text -"grumbler" <melvyn.daniel…@ntlworld.com> wrote in message news:8VqDa.2583$tV.2365@newsfep1-gui.server.ntli.net… > I’ve got this ‘Eurodynamic Test’ coming up.  Have any other males had it > done?  Looks like they shove tubes everywhere.  How undignified is it?  Is > it worth it? Does it leave your ears ringing afterwards?

Response:

grumbler wrote: > I’ve got this ‘Eurodynamic Test’ coming up.  Have any other males had it > done?  Looks like they shove tubes everywhere.  How undignified is it?  Is > it worth it? Does it leave your ears ringing afterwards? > mel

From a female’s point of view, I didn’t find the process undignified. It’s only a bladder test , and my team were very helpful, funny, and professional. The hardest part was having to drink 8 glasses of water, just before the testing ( she who hates drinking 1 glass of water, let alone 8!!) and then having to walk down a long corridor  to the allotted room, without busting It was a case of " hurry up with this test, or we’re all in trouble".  I asked the nurses if they really enjoy their job, to which they just laughed and said " it helps to pay the mortgage". It’s worth it, as the results should show just how functional, or disfunctional your bladder is, however, my test results showed my bladder to be normal!!  My theory was  that the bladder emptied entirely, in sheer fright, due to  having to deal with these 8 glasses of water And no problem with ringing ears. Heather

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I’ve got this ‘Eurodynamic Test’ coming up.  Have any other males had it done?  Looks like they shove tubes everywhere.  How undignified is it?  Is it worth it? Does it leave your ears ringing afterwards? mel

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Question:

Finally after two months and seeing 4 doctors, I was diagnosed with pyelonephritis.  I’ve been on 500mg of Cipro 2x a day for ten days (just finished yesterday) and I **still** have flank pain!  No fever and no problems with the bladder, but is this normal?  When can I expect the pain to go away?  I’m almost tempted to go to the ER rather than waiting 3 days to see my physician.

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In article <3cf063a3.53912…@news.earthlink.net>, da_kn…@yahoo.com (Denise) wrote: > Finally after two months and seeing 4 doctors, I was diagnosed with > pyelonephritis.  I’ve been on 500mg of Cipro 2x a day for ten days > (just finished yesterday) and I **still** have flank pain!  No fever > and no problems with the bladder, but is this normal?  When can I > expect the pain to go away?  I’m almost tempted to go to the ER rather > than waiting 3 days to see my physician.

I’ve had many kidey infections. The pain can last for months after an active infection. Or you could have a stone.

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Question:

I did not say it was kidney stones, simply that renal colic suggests

kidney stones (as in your nearest medical dictionary) Well, he oughta know what the dictionary says… it’s where he got his experience. Simon, sorry… you lose… ability to memorize the dictionary does not entitle one to practice medicine. You’re like an ex-spouse who tries to take everything the wrong way.

Ewwww, do we have a man with issues on our hands? Did she push a button there, Simon? Please don’t read my posts. Just skip them.

Nope, wrong again. We will read them and discredit them at every step of the way. We do that to trolls. It’s not pretty, but it must be done. — <Previous posts may have been snipped for the sake of bandwidth. Chronic Pain Foundation http://www.ChronicPainFoundation.org and http://www.ChronicPainFoundation.com ShellRN64 is my ID or nickname on: ICQ, AOL, Yahoo and MSN

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I’m not picking.  My point is, if you’re wrong, it could be dangerous.  A naive person could delay seeking medical care based on internet advice and wind up with quite a bad problem. If you think I’m like an ex-spouse, I happen to be one. I was also voted "most outspoken" in my high school senior class.  Let me tell you, you ain’t seen nothing yet!  But I forgot, you’re leaving, aren’t you?   I’ll read your posts if I damn well please.  Usenet is wide open.  Deal with it.   mary – Hide quoted text — Show quoted text – I was suggesting direction and defining the post i had read. I did not say it was kidney stones, simply that renal colic suggests kidney stones (as in your nearest medical dictionary) Quite picking. You’re like an ex-spouse who tries to take everything the wrong way. Please don’t read my posts. Just skip them. Simon Oh, so now you’re qualified to do diagnostics, long distance no less? mary "renal colic " would suggest kidney stones. Is your pain in the area of your kidneys (in your back at the bottom of your ribs) or elsewhere? Is your pain sharp or dull? Organ pain is usually a dull and referred pain. Kidney pain is usually felt an the area around your hips with pain around the front of the pelvic area and reaching down the sides of the legs a bit. Simon

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I was suggesting direction and defining the post i had read. I did not say it was kidney stones, simply that renal colic suggests kidney stones (as in your nearest medical dictionary) Quite picking. You’re like an ex-spouse who tries to take everything the wrong way. Please don’t read my posts. Just skip them. Simon – Hide quoted text — Show quoted text – Oh, so now you’re qualified to do diagnostics, long distance no less? mary "renal colic " would suggest kidney stones. Is your pain in the area of your kidneys (in your back at the bottom of your ribs) or elsewhere? Is your pain sharp or dull? Organ pain is usually a dull and referred pain. Kidney pain is usually felt an the area around your hips with pain around the front of the pelvic area and reaching down the sides of the legs a bit. Simon

Response:

I know a herbalist in Toronto that is pretty alternative but  is really good with kidneys but it’s up to you. It sounds like your options are limited. – Hide quoted text — Show quoted text – "renal colic " would suggest kidney stones. Is your pain in the area of your kidneys (in your back at the bottom of your ribs) or elsewhere? Is your pain sharp or dull? Organ pain is usually a dull and referred pain. Kidney pain is usually felt an the area around your hips with pain around the front of the pelvic area and reaching down the sides of the legs a bit. Simon Actually, it’s not kidney stones. No stones are ever indicated during the IVP and there is usually no blood in my urine. My PCP speculates that the kidney stone I suffered from 15 years ago, which was quite large, either scarred the ureter or traumatized the kidney in some way. He suspects that the ureter is spasming, which causes this unbelieveable pain. That’s what’s so infuriating about this malady. I’ve been told countless times, "There’s NOTHING wrong with you." Well, if there’s nothing wrong with me, how come I’m lying on the floor, writhing in agony? How come the blood vessels in my eyes break from sheer tense screaming? All I know is . . . it SUCKS! – Sterno — M’muh!

Response:

Dr. Work… I am pleased to say that I knew these answers from my seventh grade science class…((1978-79) I also had a psych class in college that taught the basic functions of the neuro system quite well, but I remember Jr. hi even better, as my teacher was the typical odd-ball…he used to draw wonderful full-color diagrams on the blackboard in colored chalk, then spend all day leaning and rubbing his back on them! This was even funnier as he wore the oldest, oddest sportcoats..leather patches on the elbows, usually an awful colored plaid…I even remember his name! Mr. Preusse (pronounced Price) would be proud. I do hope that more than the two of us knew the answers to your questions, as we who suffer neuro pain should know about the system that plagues us. I look forward to another Quiz…and I do hope to see the post in time to answer! Trailingvine – Hide quoted text — Show quoted text -Two in a row!  Are you sure you aren’t looking up the answers?  This is a "closed book" exam.  Do you have one of those cameras that sits on top of your computer…show me how to turn it on remotely so anyone here can watch you as you ponder these difficult questions. My point about the pain question is when I hear/read about physicians who say, "It is all in your head."  I don’t take it flippantly and I understand what they are trying to say, "We have examined you and there is nothing physically wrong with you according to our tests."  I have had patients myself who fall into that category.  And it is frustrating to both the doctor and the patient but with one big difference…while the doctor ponders this medical mystery, the patient is in agonizing pain. So, per recent pain protocols, if a patient states that they are having pain, even if you cannot find the answer, you assume that they are telling the truth and you medicate them.  Meanwhile, begin an appropriate and targeted medical investigation to attempt to find the cause.  If they are lying and abusing the drugs, it will become evident after awhile that something is amiss.  Otherwise, real people in real pain are turned away because a doctor can’t find the cause.

 "To live happily is an inward power of the soul"                   Marcus Aurelius Trailingvine

Response:

Two in a row!  Are you sure you aren’t looking up the answers?  This is a "closed book" exam.  Do you have one of those cameras that sits on top of your computer…show me how to turn it on remotely so anyone here can watch you as you ponder these difficult questions. My point about the pain question is when I hear/read about physicians who say, "It is all in your head."  I don’t take it flippantly and I understand what they are trying to say, "We have examined you and there is nothing physically wrong with you according to our tests."  I have had patients myself who fall into that category.  And it is frustrating to both the doctor and the patient but with one big difference…while the doctor ponders this medical mystery, the patient is in agonizing pain. So, per recent pain protocols, if a patient states that they are having pain, even if you cannot find the answer, you assume that they are telling the truth and you medicate them.  Meanwhile, begin an appropriate and targeted medical investigation to attempt to find the cause.  If they are lying and abusing the drugs, it will become evident after awhile that something is amiss.  Otherwise, real people in real pain are turned away because a doctor can’t find the cause. — Bill Work

– Hide quoted text — Show quoted text – Uhmm… I’ll take X for the block… and the answer is… NO!!! Will Give that boy a prize! Now…does the pain that you feel from an amputated limb (phantom pain) any less "real" than the pain that you would feel from a mangled limb? Bill Work All of it is in your mind… without pain receptors in the brain, therewould be no pain. Did I pass the test? Will Great poem! BTW, could anyone tell me the difference in pain between what is "in your mind" and what is in your body? (This is a test question…) Bill Work

Response:

Oh, so now you’re qualified to do diagnostics, long distance no less? mary – Hide quoted text — Show quoted text – "renal colic " would suggest kidney stones. Is your pain in the area of your kidneys (in your back at the bottom of your ribs) or elsewhere? Is your pain sharp or dull? Organ pain is usually a dull and referred pain. Kidney pain is usually felt an the area around your hips with pain around the front of the pelvic area and reaching down the sides of the legs a bit. Simon

Response:

Correct.  Pain is pain, no matter the origin. — Bill Work

– Hide quoted text — Show quoted text – Even psychogenic pain is not imagined pain. Simon Great poem! BTW, could anyone tell me the difference in pain between what is "in your mind" and what is in your body? (This is a test question…) — Bill Work Plight of a Pain Patient. Oh ! the stories, I could tell about the doctors, I knew well second opinions,I’v had a few take 100,and multiply by two See a specialist, I was told For a cure,you must be bold They looked everywhere,even my head Finally we found it,  the old Doctor said It’s not in your body,that we can find We know everything, so it’s all in your mind So, learn to live with it, if you want to grow old We gladly take cash, checks , or Visa Gold. by Lem Lyons

Response:

With a million dollar workup, I doubt he has kidney stones.  They are easily seen on an IVP and most are radio-opaque on a plain film (except urate stones).  When the pain is down low, as you mention at the end, that is the pain of a stone moving down the ureter to the bladder.  For a man, as it approaches the trigone of the bladder, the pain will be referred to the head of the penis (joy!).  Renal colic just means your kidneys hurt and that is in your back just where your bottom ribs are.  If you have ever had a kidney infection, i.e., pyelonephritis, then you know exactly where the pain is. Sorry to hear that, Sterno. — Bill Work

– Hide quoted text — Show quoted text – "renal colic " would suggest kidney stones. Is your pain in the area of your kidneys (in your back at the bottom of your ribs) or elsewhere? Is your pain sharp or dull? Organ pain is usually a dull and referred pain. Kidney pain is usually felt an the area around your hips with pain around the front of the pelvic area and reaching down the sides of the legs a bit. Simon Plight of a Pain Patient. Man, can I relate to THAT! I’ve gotten so incredibly sick of hearing, "Heck . . . we don’t know WHAT’S going on with you. That’ll be $900." In the past couple of years I’ve had seven IVP’s, two MRI’s, two barium enemas, many, many blood tests, consultations with urologists, nephrologists, etc, etc, etc. I’ve spend untold thousands of dollars on these tests. It’s gotten to the point where I don’t WANT any more tests. What’s the point? It took seven years before anybody would even NAME my malady. They finally settled on the name "renal colic." How’s THAT for an obscure catch-all? All I know is I HURT, non-stop, and that it’s been going on for about 15 years! Sixty-five Norco tablets a month allows me to at least function . . . but the pain is ALWAYS there. I get so very tired of it sometimes. Luckily I have a great PCP, great daughters and a wonderful, understanding girlfriend. I know my sweetie gets awfully tired of it sometimes, but she’s where I turn when it’s to the point I just want to end it all. May all your pain levels be ONE or below this weekend. – Sterno — M’muh!

Response:

Okay, I cheated…. I took a class at college this last semester in chronic pain that was offered to pharmacy students. I’m not a pharm. student though… I just took it as an elective because I figured it would help me personally and professionally. It was nice to see they were teaching future pharmacists that opiod/opiate therapy is appropriate and even recommended for chronic pain patients. Will – Hide quoted text — Show quoted text – Two in a row!  Are you sure you aren’t looking up the answers?  This is a "closed book" exam.  Do you have one of those cameras that sits on top of your computer…show me how to turn it on remotely so anyone here can watch you as you ponder these difficult questions. My point about the pain question is when I hear/read about physicians who say, "It is all in your head."  I don’t take it flippantly and I understand what they are trying to say, "We have examined you and there is nothing physically wrong with you according to our tests."  I have had patients myself who fall into that category.  And it is frustrating to both the doctor and the patient but with one big difference…while the doctor ponders this medical mystery, the patient is in agonizing pain. So, per recent pain protocols, if a patient states that they are having pain, even if you cannot find the answer, you assume that they are telling the truth and you medicate them.  Meanwhile, begin an appropriate and targeted medical investigation to attempt to find the cause.  If they are lying and abusing the drugs, it will become evident after awhile that something is amiss.  Otherwise, real people in real pain are turned away because a doctor can’t find the cause. — Bill Work

Response:

No it isn’t.  To the patient’s mind (brain) I should think his receptors are just as valid as if the limb were there! I know that my mother’s pain was very real!   Jo – Hide quoted text — Show quoted text -Give that boy a prize! Now…does the pain that you feel from an amputated limb (phantom pain) any less "real" than the pain that you would feel from a mangled limb? — Bill Work All of it is in your mind… without pain receptors in the brain, there would be no pain. Did I pass the test? Will Great poem! BTW, could anyone tell me the difference in pain between what is "in your mind" and what is in your body? (This is a test question…) — Bill Work

Response:

"renal colic " would suggest kidney stones. Is your pain in the area of your kidneys (in your back at the bottom of your ribs) or elsewhere? Is your pain sharp or dull? Organ pain is usually a dull and referred pain. Kidney pain is usually felt an the area around your hips with pain around the front of the pelvic area and reaching down the sides of the legs a bit. Simon – Hide quoted text — Show quoted text – Plight of a Pain Patient. Man, can I relate to THAT! I’ve gotten so incredibly sick of hearing, "Heck . . . we don’t know WHAT’S going on with you. That’ll be $900." In the past couple of years I’ve had seven IVP’s, two MRI’s, two barium enemas, many, many blood tests, consultations with urologists, nephrologists, etc, etc, etc. I’ve spend untold thousands of dollars on these tests. It’s gotten to the point where I don’t WANT any more tests. What’s the point? It took seven years before anybody would even NAME my malady. They finally settled on the name "renal colic." How’s THAT for an obscure catch-all? All I know is I HURT, non-stop, and that it’s been going on for about 15 years! Sixty-five Norco tablets a month allows me to at least function . . . but the pain is ALWAYS there. I get so very tired of it sometimes. Luckily I have a great PCP, great daughters and a wonderful, understanding girlfriend. I know my sweetie gets awfully tired of it sometimes, but she’s where I turn when it’s to the point I just want to end it all. May all your pain levels be ONE or below this weekend. – Sterno — M’muh!

Response:

Even psychogenic pain is not imagined pain. Simon – Hide quoted text — Show quoted text – Great poem! BTW, could anyone tell me the difference in pain between what is "in your mind" and what is in your body? (This is a test question…) — Bill Work Plight of a Pain Patient. Oh ! the stories, I could tell about the doctors, I knew well second opinions,I’v had a few take 100,and multiply by two See a specialist, I was told For a cure,you must be bold They looked everywhere,even my head Finally we found it,  the old Doctor said It’s not in your body,that we can find We know everything, so it’s all in your mind So, learn to live with it, if you want to grow old We gladly take cash, checks , or Visa Gold. by Lem Lyons

Response:

"renal colic " would suggest kidney stones. Is your pain in the area of your kidneys (in your back at the bottom of your ribs) or elsewhere? Is your pain sharp or dull? Organ pain is usually a dull and referred pain. Kidney pain is usually felt an the area around your hips with pain around the front of the pelvic area and reaching down the sides of the legs a bit. Simon

Actually, it’s not kidney stones. No stones are ever indicated during the IVP and there is usually no blood in my urine. My PCP speculates that the kidney stone I suffered from 15 years ago, which was quite large, either scarred the ureter or traumatized the kidney in some way. He suspects that the ureter is spasming, which causes this unbelieveable pain. That’s what’s so infuriating about this malady. I’ve been told countless times, "There’s NOTHING wrong with you." Well, if there’s nothing wrong with me, how come I’m lying on the floor, writhing in agony? How come the blood vessels in my eyes break from sheer tense screaming? All I know is . . . it SUCKS! – Sterno — M’muh!

Response:

wazzzzzup!!! – Hide quoted text — Show quoted text – Plight of a Pain Patient. Oh ! the stories, I could tell about the doctors, I knew well second opinions,I’v had a few take 100,and multiply by two See a specialist, I was told For a cure,you must be bold They looked everywhere,even my head Finally we found it,  the old Doctor said It’s not in your body,that we can find We know everything, so it’s all in your mind So, learn to live with it, if you want to grow old We gladly take cash, checks , or Visa Gold. by Lem Lyons

true… true… nice work Lem, you have illustrated the situation most of have experienced with perfect imagery… — jgl :::: lost-america: http://www.lostamerica.org/ joe’s world: http://members.bainbridge.net/~jlong

Response:

Plight of a Pain Patient.

Man, can I relate to THAT! I’ve gotten so incredibly sick of hearing, "Heck . . . we don’t know WHAT’S going on with you. That’ll be $900." In the past couple of years I’ve had seven IVP’s, two MRI’s, two barium enemas, many, many blood tests, consultations with urologists, nephrologists, etc, etc, etc. I’ve spend untold thousands of dollars on these tests. It’s gotten to the point where I don’t WANT any more tests. What’s the point? It took seven years before anybody would even NAME my malady. They finally settled on the name "renal colic." How’s THAT for an obscure catch-all? All I know is I HURT, non-stop, and that it’s been going on for about 15 years! Sixty-five Norco tablets a month allows me to at least function . . . but the pain is ALWAYS there. I get so very tired of it sometimes. Luckily I have a great PCP, great daughters and a wonderful, understanding girlfriend. I know my sweetie gets awfully tired of it sometimes, but she’s where I turn when it’s to the point I just want to end it all. May all your pain levels be ONE or below this weekend. – Sterno — M’muh!

Response:

Great poem! BTW, could anyone tell me the difference in pain between what is "in your mind" and what is in your body? (This is a test question…) — Bill Work

– Hide quoted text — Show quoted text – Plight of a Pain Patient. Oh ! the stories, I could tell about the doctors, I knew well second opinions,I’v had a few take 100,and multiply by two See a specialist, I was told For a cure,you must be bold They looked everywhere,even my head Finally we found it,  the old Doctor said It’s not in your body,that we can find We know everything, so it’s all in your mind So, learn to live with it, if you want to grow old We gladly take cash, checks , or Visa Gold. by Lem Lyons

Response:

All of it is in your mind… without pain receptors in the brain, there would be no pain. Did I pass the test? Will – Hide quoted text — Show quoted text – Great poem! BTW, could anyone tell me the difference in pain between what is "in your mind" and what is in your body? (This is a test question…) — Bill Work

Response:

Give that boy a prize! Now…does the pain that you feel from an amputated limb (phantom pain) any less "real" than the pain that you would feel from a mangled limb? — Bill Work

– Hide quoted text — Show quoted text – All of it is in your mind… without pain receptors in the brain, there would be no pain. Did I pass the test? Will Great poem! BTW, could anyone tell me the difference in pain between what is "in your mind" and what is in your body? (This is a test question…) — Bill Work

Response:

Uhmm… I’ll take X for the block… and the answer is… NO!!! Will – Hide quoted text — Show quoted text – Give that boy a prize! Now…does the pain that you feel from an amputated limb (phantom pain) any less "real" than the pain that you would feel from a mangled limb? Bill Work All of it is in your mind… without pain receptors in the brain, therewould be no pain. Did I pass the test? Will Great poem! BTW, could anyone tell me the difference in pain between what is "in your mind" and what is in your body? (This is a test question…) Bill Work

Response:

Plight of a Pain Patient. Oh ! the stories, I could tell about the doctors, I knew well second opinions,I’v had a few take 100,and multiply by two See a specialist, I was told For a cure,you must be bold They looked everywhere,even my head Finally we found it,  the old Doctor said It’s not in your body,that we can find We know everything, so it’s all in your mind So, learn to live with it, if you want to grow old We gladly take cash, checks , or Visa Gold. by Lem Lyons

Response:

LOLOL!!!!  Thanks, Lem! Love, Cat – Hide quoted text — Show quoted text – Plight of a Pain Patient. Oh ! the stories, I could tell about the doctors, I knew well second opinions,I’v had a few take 100,and multiply by two See a specialist, I was told For a cure,you must be bold They looked everywhere,even my head Finally we found it,  the old Doctor said It’s not in your body,that we can find We know everything, so it’s all in your mind So, learn to live with it, if you want to grow old We gladly take cash, checks , or Visa Gold. by Lem Lyons

Response:

Question:

>Perhaps the most important factor in increasing weartime is that I use Devrom >chewable deodorant tablets.  This neutralizes the acid output, so the seal >doesn’t get broken down as rapidly.  Also, if I do have a small leak under >the >seal, it doesn’t chew up my skin.

Are you sure the deodorant tablets affect the acids or enzymes in the output? Between the convex flange and the Eakin seals, I would expect you to get over a week no matter what.  Have you ever tried avoiding the tablets and noticed that your wear time was reduced? I’ve never used a deodorant with the philosophy that it smelled bad before and it smells bad now, but if it can influence wear time, I might have to rethink! (And my companion probably wouldn’t mind either!) Jim/Chicago

Response:

>I’ve had my ileostomy about 6 months now.  In the beginning I averaged 6 >days+ on my appliance.  The past month or so I’m getting 3-4 days now.  I >use the Convatec 1 3/4" flange 2 piece system.  Plus, an ekin seal due to my >retracted stoma.  I always have the same area that starts to raise up along >the outside of the flange. It’s an area where my skin has a small valley >near the stoma. >Just wondered what the average time is and if anyone had suggestions on >extending the ware time. >Thanks…. >Dennis

welcome to the club, dennis.  hope everything’s working out well for you.  i wear a hollister new image 1 3/4" 2 piece with karaya paste and get 5 days to the minute with em.   i’m waiting for their new image line to come out with convex wafers.  i think i can get a week or better with that.  i like em cause they’re fuzzy and they feel nice next to my skin (both the outside of the wafer and the bag).   if your insurance company’ll let you, try some different products to see if they last longer.   if you ever have any questions or need advice, feel free to email.  i’d be happy to help out. Lauren! (take out the "nojunk" to reply) beer drinking, sax playing, baseball junkie on a rampage … beware!

Response:

Tammy, Most mail order suppliers carry Devrom.  For instance, Edgepark (800) 321-0591, lists it as PADEVROM, $12.65 per bottle in their 1998 catalog.  It is made by Parthenon. Zokolo, First of all I’m not sure about how important the Devrom is in extending the wear time.  It is only a feeling that I have gotten.  I should go back and do a controlled experiment, trying alternate changes with and without the Devrom. But since I’ve started using Devrom, I haven’t had any significant skin ulceration around my stoma. But yes, the Devrom works by neutralizing the acid from the stomach, just like Pepto Bismol, to which it is closely related chemically.  The digestive enzymes work best at acid pHs, so neutralization of the acid effectively destroys any enzymatic activity.  It is this enzyme action that causes skin problems.  The enzymes actually digest the skin, just like they digest any other protein that you might eat.  So with the Devrom, even if I get a small amount of seepage under my seal, the skin doesn’t get ulcerated, or at least not as ulcerated. The signal that I need to change is an "itching" feeling around the stoma. This tells me that I have gotten some seepage that is starting to irritate the skin.  If I forget to take my Devrom on schedule (2x per day), then my output starts to smell and I know it is then acidic.  I’ve assumed that this caused some degradation of the seal and resulted in leakage.  But it could also just be that I always have a little leakage, but don’t notice it unless the pH becomes acidic and the enzymes start digesting my skin. I will have to run the experiment to find out which is the case. Bill (I)

Response:

I get approximately 4 days from my Convatec Natura wafer and 7 days from my Convatec Active Life Urostomy pouch.  I live in Florida and during the summer change the colostomy wafer every three days.

Response:

>Tammy, >Most mail order suppliers carry Devrom.  For instance, Edgepark (800) >321-0591, >lists it as PADEVROM, $12.65 per bottle in their 1998 catalog.  It is made by >Parthenon.

You can buy directly from Parthenon for about $8-something a bottle (of 100). bd

Response:

>From: Earl cen09…@centurytel.net >Date: 6/5/00 4:21 PM EST >I usually change >about every two weeks.

You appear to have the answer to all problems. Can you tell me why you can wear skin barrier for 2 weeks and mine dissolves in 3-4 days.

Response:

ALastnik wrote: > >From: Earl cen09…@centurytel.net > >Date: 6/5/00 4:21 PM EST > >I usually change > >about every two weeks. > You appear to have the answer to all problems. Can you tell me why you can wear > skin barrier for 2 weeks and mine dissolves in 3-4 days.

………………………………………………………………… …….. No, but I can tell you what I did to increase my wear time.  I experimented a lot since 1988, mainly between ConvaTec and Hollister products.  Each time I was able to gain one day, I adopted that procedure.  I believe urostomates may be able to have longer wear times than ileostomates.  Some of the things that I think helped are: Having very dry skin when applying.  This means one should change before bathing or showering, in a dry room, and when not sweating. Using a two-piece system.  Using a wafer/skin barrier that "turtlenecks", such as ConvaTec’s Durahesive and Hollister’s Premium. Using convex inserts, even though my stoma appears to be normal. Using no pastes or skin preps.  I have tried several and each one decreased my wear time. Pay close attention to hole size, making it as close-fitting as possible (may not be for ileostomates) and centering the stoma precisely in the center of the hole, using a mirror for a straight-on view.  Easier to do with a 2-piece system than with a 1-piece prosthesis. I use an adhesive remover and soap the area.  Carefully remove all soap and dry the area thoroughly. For a detailed description of my procedure, go to: http://www.geocities.com/~mr-ostomy/ Click on Ostomy Tips and scroll down to Urostomy Change Procedure #1. Earl (U)

Response:

I have added two procedures this last year.  One is pictureframing the wafer with "pink" or "hospital tape.  I use a brand named Hy-Tape. The other is wearing an ostomy appliance belt, adjustable – ConvaTec #1755-07 a bit more snug than the directions state.   I picture frame in this sequence.  I cut four 4" strips – 1 of 2" width, 1 of 1 1/2" width and 2 of 1" width.  I first place the 2" strip below the wafer, then the two 1" strips on the sides to overlap the ends of the tape below, and finally, the 1 1/2" strip above the wafer.  This way, the tape sheds all water during showering. Earl (U) ………………………………………………………………… … – Hide quoted text — Show quoted text -Earl wrote: > ALastnik wrote: > > >From: Earl cen09…@centurytel.net > > >Date: 6/5/00 4:21 PM EST > > >I usually change > > >about every two weeks. > > You appear to have the answer to all problems. Can you tell me why you can wear > > skin barrier for 2 weeks and mine dissolves in 3-4 days. > ………………………………………………………………… …….. > No, but I can tell you what I did to increase my wear time.  I > experimented a lot since 1988, mainly between ConvaTec and Hollister > products.  Each time I was able to gain one day, I adopted that > procedure.  I believe urostomates may be able to have longer wear > times than ileostomates.  Some of the things that I think helped are: > Having very dry skin when applying.  This means one should change > before bathing or showering, in a dry room, and when not sweating. > Using a two-piece system.  Using a wafer/skin barrier that > "turtlenecks", such as ConvaTec’s Durahesive and Hollister’s Premium. > Using convex inserts, even though my stoma appears to be normal. > Using no pastes or skin preps.  I have tried several and each one > decreased my wear time. > Pay close attention to hole size, making it as close-fitting as > possible (may not be for ileostomates) and centering the stoma > precisely in the center of the hole, using a mirror for a straight-on > view.  Easier to do with a 2-piece system than with a 1-piece > prosthesis. > I use an adhesive remover and soap the area.  Carefully remove all > soap and dry the area thoroughly. > For a detailed description of my procedure, go to: > http://www.geocities.com/~mr-ostomy/ > Click on Ostomy Tips and scroll down to Urostomy Change Procedure #1. > Earl (U)

Response:

>From: Earl cen09…@centurytel.net >I can tell you what I did to increase my wear time.

That does not address my problem. Skin barriers are hydrophillic, that is. they absorb and hold liquid. As liquid content increases, adhesion decreases. As liquid is absorbed the barrier becomes a gel and then dissolves. Why doesn’t yours dissolve?

Response:

ALastnik wrote: > >From: Earl cen09…@centurytel.net > >I can tell you what I did to increase my wear time. > That does not address my problem. Skin barriers are hydrophillic, that is. they > absorb and hold liquid. As liquid content increases, adhesion decreases. As > liquid is absorbed the barrier becomes a gel and then dissolves. > Why doesn’t yours dissolve?

That’s why it is so important that ones skin be very dry when applying the wafer.  That means a person must change before showering or wait an hour or two after showering and change in a room with low humidity.  My 2-week wear time is based on summer wear in Minnesota. I could extend that during the winter.  I imagine weartime would be greatly reduced in hotter climes or among more active people.  I am 81 years old and not very active outdoors, much preferring air-conditioned surroundings in the summer. Earl (U)

Response:

I get 7 to 8 days winter or summer in Pensacola, using the least expensive line of supplies put out by Hollister.  I have been working outside for the last 3 days in the 90 degree weather (but humidity has been lower) and have experienced no problems with the equipment.  I also RV as much as I can which can help keep me sorta busy.  Course, when I cut the hole in the wafer, I do offset it to the upper-right limits described on the wafer (I don’t cut the hole squarely in the middle of the wafer), because I learned a long time ago that my wearout zone is to the bottom-right side of the wafer.  It works for me. PcolaPhil "Denise Fell" <da…@fdn.com> wrote in message

news:Pine.GSO.4.05.10006061812260.4866-100000@shell2… | I get approximately 4 days from my Convatec Natura wafer and 7 days from | my Convatec Active Life Urostomy pouch.  I live in Florida and during the | summer change the colostomy wafer every three days. | |

Response:

In article <20000607215830.20043.00001…@ng-cn1.aol.com>,   alast…@aol.com (ALastnik) wrote: > >From: Earl cen09…@centurytel.net > >I can tell you what I did to increase my wear time. > That does not address my problem. Skin barriers are hydrophillic, that is. they > absorb and hold liquid. As liquid content increases, adhesion decreases. As > liquid is absorbed the barrier becomes a gel and then dissolves. > Why doesn’t yours dissolve?

  I don’t know why yours is dissolving after 3 or 4 days, but I would bet that it has something to do with slight leakage.  After many months of poor wear time, I have finally achieved anywhere from 9 to 14 days. I use Convatec One-piece Active Life Convex with Durahesive Skin Barrier (for urostomy).  BTW, for those of you who remember that I also was unable to shower without my pouch coming loose, that problem has been overcome as well. Best wishes and good luck on finding what works for you…. Lynda Sent via Deja.com http://www.deja.com/ Before you buy.

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Way to go, /bd/!  One should keep experimenting a little bit at a time so that if there is a change, one will know what caused it. Earl (U) – Hide quoted text — Show quoted text -RobtAD wrote: > One thing I did to greatly increase my wear time is to use Skin Bond adhesive. > I went fron 4-5 days to at least 7 and have gone up to 2 weeks. My skin is > sensitive to the adhesive used in Convatec flex wafers, so I needed some kind > of barrier. I tried skin barrier and it worked,  but it seemed to impede the > ability of the wafer to stick. I then tried Skin bond from the advice I got > from this group. It not only acts as a skin barrier but it really bonds the > appliance to my skin. It also is no problem getting it off because 99% of it > comes off with the appliance. My skin is healthy and my appliance stays on > longer. It’s great. I use Durahesive with Eakin seals. > /bd/

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>From: Earl cen09…@centurytel.net >That’s why it is so important that ones skin be very dry when applying >the wafer.

I know the drill very well. BUT urine is wet and the hydrophillic material absorbs it even if it is only through the edges. Guess that you’re just lucky.

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One thing I did to greatly increase my wear time is to use Skin Bond adhesive. I went fron 4-5 days to at least 7 and have gone up to 2 weeks. My skin is sensitive to the adhesive used in Convatec flex wafers, so I needed some kind of barrier. I tried skin barrier and it worked,  but it seemed to impede the ability of the wafer to stick. I then tried Skin bond from the advice I got from this group. It not only acts as a skin barrier but it really bonds the appliance to my skin. It also is no problem getting it off because 99% of it comes off with the appliance. My skin is healthy and my appliance stays on longer. It’s great. I use Durahesive with Eakin seals. /bd/

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Hi Bill – I also use the Convex bags, and I love them.  Where do you get the deoderant tablets you mentioned in your post ? I’ve never heard of them, but would be interested in trying it. Thanks, Tammy

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The 18 days was a fluke because I procrastinated.  I usually change about every two weeks.  If something important is coming up and I am near the change period, I will change the day before the event.  I am very careful about examining the stoma area at change time.  I can tell by the color of the face plate how much more I would be able to go.  The only times I have an odor is when I get pyelonephritis, an infection in the kidney area.  I keep my night drainage bottle and legbags clean with Smith + Nephew’s Uri-Kleen #4051-00.  A little goes a long way.  A 2 oz. bottle costs about $6.00. For a description of my change procedure, go to: http://www.geocities.com/~mr-ostomy/ Click on Ostomy Tips and scroll down to Urostomy Change Procedure #1. Earl (U) – Hide quoted text — Show quoted text -Richie Simpson wrote: > Earl <cen09…@centurytel.net> wrote in message > news:393B9095.4BD0234@centurytel.net… > > Make sure your skin is very, very dry. > Snip-Snip >  > Earl (U) <who last changed at 18 days with no leaks> > ——————————————- > !!!!!!!!!  18 days ,Earl?     I assume you have a rather flat stomach and a > well placed stoma (no belt line across it).    Earl, as I change (Convatec 1 > piece) after 6 days, there is quite a bit of odor from bacteria I assume. > Does your skin stay healthy after being couped up that long?      I am quite > impressed!! > Richie (U)   Nashville, TN.

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I got my ileo in Jan 1998.  I started out having to change every 3-4 days, but now get 8-12 days, mostly about 10.  I increased my weartime by doing 3 things: First I switched to convex systems, even though my stoma sticks out fine. This seems to give a stronger seal.  I also began using Eakin seals even though my belly has no creases.  These two things have not only increased weartime, but also made the pouch feel more securely fastened.  I change when I begin to feel an itch, which means I have a leak under the seal.   Perhaps the most important factor in increasing weartime is that I use Devrom chewable deodorant tablets.  This neutralizes the acid output, so the seal doesn’t get broken down as rapidly.  Also, if I do have a small leak under the seal, it doesn’t chew up my skin. Bill (I)

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I only get three days from all the appliances I have tried. I have never been able to get more days. I have tried everything. I believe some of us have skin that just doesnt promote longer wearing times. I have lost a considerable amount of weight (45lbs) and I still only get three days. I have just learned to deal with it . Thankfully I have an insurance company that doesnt question anything I order. tracy

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Hi Dennis – I am fairly new here. I had J-Pouch surgery on April 22, so I have a temporary ileostomy. In the beginning I was having a problem with my bags leaking within a day or two. I have finally found one that works for me: it’s the Convatec 3/4" Convex (One Piece). My stoma doesn’t stick out very much and it tips toward the bottom, this was causing everything to go underneath the seal. This "bag" that I’m using has a concave flange so it pushes the stoma out. I am so happy that my ET nurse suggested this to me. I change the bag every 4-5 days, not because I have to, but because I want a fresh one. Good Luck. Tammy

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Earl <cen09…@centurytel.net> wrote in message

news:393B9095.4BD0234@centurytel.net… > Make sure your skin is very, very dry.

Snip-Snip  > Earl (U) <who last changed at 18 days with no leaks> ——————————————- !!!!!!!!!  18 days ,Earl?     I assume you have a rather flat stomach and a well placed stoma (no belt line across it).    Earl, as I change (Convatec 1 piece) after 6 days, there is quite a bit of odor from bacteria I assume. Does your skin stay healthy after being couped up that long?      I am quite impressed!! Richie (U)   Nashville, TN.

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Make sure your skin is very, very dry.  This means it is better to change before showering or bathing.  Since you are using ConvaTec 2-piece system, the Durahesive ones #125991 should provide longer weartime than the Stomahesive ones. (Some people are allergic to the Durahesive wafers.)  Since your stoma is a bit retracted, use "disposable" convex inserts #4040xx (the xx denotes flange and stoma size).  The inside diameter of the insert should be 1/4" larger than the widest diameter of the stoma.  The inserts can be used over and over again – they never wear out, but ConvaTec would like to sell a lot of them because the profit margin on them is so high. Earl (U) <who last changed at 18 days with no leaks> – Hide quoted text — Show quoted text -Dennis P wrote: > I’ve had my ileostomy about 6 months now.  In the beginning I averaged 6 > days+ on my appliance.  The past month or so I’m getting 3-4 days now.  I > use the Convatec 1 3/4" flange 2 piece system.  Plus, an ekin seal due to my > retracted stoma.  I always have the same area that starts to raise up along > the outside of the flange. It’s an area where my skin has a small valley > near the stoma. > Just wondered what the average time is and if anyone had suggestions on > extending the ware time. > Thanks…. > Dennis

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I’ve had my ileostomy 6 yrs. I have since determined it has a mind of its own, it is ideal to wear a week, would love it, but if its leaking of course you have to change it or suffer skin breakdown. Which I now have a severe case of ulcerations, but thats another story. The rule I go by now is if I can feel it functioning, even if I can’t see the leakage, change it because its leaking. Only if you don’t feel it it isn’t. carol

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I’m a caregiver to my wife who had colostomy done about 3 months ago.  We also use to Convatec 2-piece appliance.  The ostomy nurse suggesting changing the wafer and pouch every 5-7 days.  We’ve maintained that schedule and have encountered no problems. – Hide quoted text — Show quoted text -Dennis P wrote in message … >I’ve had my ileostomy about 6 months now.  In the beginning I averaged 6 >days+ on my appliance.  The past month or so I’m getting 3-4 days now.  I >use the Convatec 1 3/4" flange 2 piece system.  Plus, an ekin seal due to my >retracted stoma.  I always have the same area that starts to raise up along >the outside of the flange. It’s an area where my skin has a small valley >near the stoma. >Just wondered what the average time is and if anyone had suggestions on >extending the ware time. >Thanks…. >Dennis

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I’ve had my ileostomy about 6 months now.  In the beginning I averaged 6 days+ on my appliance.  The past month or so I’m getting 3-4 days now.  I use the Convatec 1 3/4" flange 2 piece system.  Plus, an ekin seal due to my retracted stoma.  I always have the same area that starts to raise up along the outside of the flange. It’s an area where my skin has a small valley near the stoma. Just wondered what the average time is and if anyone had suggestions on extending the ware time. Thanks…. Dennis

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Question:

- Hide quoted text — Show quoted text -Good question!  I have one very small kidney, and one normal size one.  Mom had small kidney ’til it re-absorbed completely.  Sister w/ 4 kidneys and uretors (tube from kidney to bladder), 1 bladder and urethra (from bladder to outside). Had surgery in early adulthood and they removed the extras.  No apparent problem since then. Had an abdominal ultrasound last summer — found the state of my kidneys at that time.  Besides the small one, both kidneys had some scarring (probably from pyelonephritis as a kid and exacerbated w/ NSAIDs).  Slightly abnormal proteinuria and slightly abnormal creatinine clearance.  Kidney doc said I didn’t need any treatment, just to test levels every 6 months, and he also felt Glucophage was okay, at least for now..  Since off NSAIDs, my levels are very close to normal! We are watching closely. Thanks for asking. Lisha

It sounds like the Glucophage is giving you good control which is great. For myself (T2 for 4 years) I was on about the same dosage of Glucophage for 6 months along with Glucotrol and felt like if the diabetes didnt kill me the medication would. I begged the doctor for months to let put me on insulin, but as doctors are they are brainwashed by the drug companies from day 1 in medical school. He seemed to think that taking 6 pills a day was better than insulin. Went to another doctor and he put me on insulin and I feel 10 times better. Granted the thought of having to take shots scared the hell out of me, and it took a while before I could even bring myself to do it, but actually its not bad at all. The best thing about taking insulin is you have much greater control, if you’re taking medication and your bg’s are too high there is not a lot you can do, with insulin you can bring it down within hours and you also have a greater flexibility over what and how much you can eat. The bottom line is if what you are doing now brings you good control then thats whats most important. Rob

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carbs depending on complexity process at different rates.  Extremely simple carbs will "spike" extremely quickly and can be out of the system in a very short time.  The more complex the smoother the curve and no real spike.  A meal that involves extremely simple and extremely complex carbs could have and extremely high spike and then drop sharply because of the longer processing of the complex carbs.  high fiber will also have a smoother curve.  The amount of fat in a meal can also effect the curve in a flattening effect.  I recent testing on myself i found the effect of the simple sugars to be very profound.  T2 on diet alone right now.  With a meal very heavy in fruit i shot up to 240 in one and a half hours.  dropped to 120 less than an hour later.  This left me feeling hypo when i was not.  Have now learned to moderate the fruit and get some heavy fiber carbs in the mix. jimt – Hide quoted text — Show quoted text – To the experts: I’m a T2 on 500mg Glucophage 3x/day, and because of iffy kidneys, I’m supposed to do 1/2 of my calories daily in carbs, and the rest split between protein and fats. We went to a salad place for dinner last night.  I fixed a humungous salad, ate about 3/4 of it — it had everything on it!  Then 2! baked potatoes w/ butter, and a small side of vegetarian marinara spaghetti.  Oh, and a drink that was called apple grape — it actually had apples, pears and grapes… and it was full of sugar (natch). I figured my BG would be up,  but 2 hours pp it was 105! and i usually run anywhere from 110 to 135 2 hours pp. Any clues? Thanks. Lisha I’m wondering since your kidneys are ‘iffy’ why you are on Glucophage at all. Your kidneys need to be in good working order to avoid lactic acidosis, and even then it occurs in 1 out of every 33,000 people of people that take Glucophage, and out of those its fatal in half the cases. Which means a person with healthy kidneys stands a 1 in 66,000 chance of dying just from taking this drug!

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– Hide quoted text — Show quoted text -To the experts: I’m a T2 on 500mg Glucophage 3x/day, and because of iffy kidneys, I’m supposed to do 1/2 of my calories daily in carbs, and the rest split between protein and fats. We went to a salad place for dinner last night.  I fixed a humungous salad, ate about 3/4 of it — it had everything on it!  Then 2! baked potatoes w/ butter, and a small side of vegetarian marinara spaghetti.  Oh, and a drink that was called apple grape — it actually had apples, pears and grapes… and it was full of sugar (natch). I figured my BG would be up,  but 2 hours pp it was 105! and i usually run anywhere from 110 to 135 2 hours pp. Any clues? Thanks. Lisha

I’m wondering since your kidneys are ‘iffy’ why you are on Glucophage at all. Your kidneys need to be in good working order to avoid lactic acidosis, and even then it occurs in 1 out of every 33,000 people of people that take Glucophage, and out of those its fatal in half the cases. Which means a person with healthy kidneys stands a 1 in 66,000 chance of dying just from taking this drug!

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I’m wondering since your kidneys are ‘iffy’ why you are on Glucophage at all. Your kidneys need to be in good working order to avoid lactic acidosis, and even then it occurs in 1 out of every 33,000 people of people that take Glucophage, and out of those its fatal in half the cases. Which means a person with healthy kidneys stands a 1 in 66,000 chance of dying just from taking this drug!

Good question!  I have one very small kidney, and one normal size one.  Mom had small kidney ’til it re-absorbed completely.  Sister w/ 4 kidneys and uretors (tube from kidney to bladder), 1 bladder and urethra (from bladder to outside).  Had surgery in early adulthood and they removed the extras.  No apparent problem since then. Had an abdominal ultrasound last summer — found the state of my kidneys at that time.  Besides the small one, both kidneys had some scarring (probably from pyelonephritis as a kid and exacerbated w/ NSAIDs).  Slightly abnormal proteinuria and slightly abnormal creatinine clearance.  Kidney doc said I didn’t need any treatment, just to test levels every 6 months, and he also felt Glucophage was okay, at least for now..  Since off NSAIDs, my levels are very close to normal! We are watching closely. Thanks for asking. Lisha

Response:

To the experts: I’m a T2 on 500mg Glucophage 3x/day, and because of iffy kidneys, I’m supposed to do 1/2 of my calories daily in carbs, and the rest split between protein and fats. We went to a salad place for dinner last night.  I fixed a humungous salad, ate about 3/4 of it — it had everything on it!  Then 2! baked potatoes w/ butter, and a small side of vegetarian marinara spaghetti.  Oh, and a drink that was called apple grape — it actually had apples, pears and grapes… and it was full of sugar (natch). I figured my BG would be up,  but 2 hours pp it was 105! and i usually run anywhere from 110 to 135 2 hours pp. Any clues? Thanks. Lisha

Response:

Question:

Hi all, Hope that everyone is recovering from the holidays.  I have a couple of questions that need answering ASAP! First, I must preface this by telling you I am not able to see my PCP for 3 weeks and my rhumie is out of the country as is my neuro, so I am turning to all of you. During the past few days, I have been running a higher than normal temp, I usually run a low grade fever daily.  However, along with this increase in my temperature, and have begun experiencing severe pain in my kidney region. I cath daily, as my bladder no longer functions, but I have noticed that I have also started losing an enormous amount of hair and my skin is beginning to peel off of my legs, leaving open sores.  This all came out of the blue, I knew the backs of my legs were itching like crazy, so I ask my husband to take a look and check for possible insect bites or something, only to discover my skin is falling off, it is rapidly increasing, and has now come around to the sides and front of my thighs and sides of my calves.   Has anyone experienced this?  I am getting worried as I do not understand what is happening to my body. My husband contacted the ER and they told him I have to wait to see my PCP as this is not life threatening.   If anyone has any advise to impart other than going to the ER which is not an option here, I would love to hear from you.  I am frightened and do not understand.  My husband is equally confused and concerned.  He did his best with the ER, trying to remain calm and explaining to them very clearly what I am experiecing.  He is good to me and I could not ask for more from any man. Please, if you have had this occur, let me know.  Oh, BTW, when I cath, my urine is very dark no matter how much water I consume, and the smell is terrible. Thank you, Sylvia Holan / Norway

Response:

Hi Sylvia, Please find another ER and go. If you’re running a fever, have pain in your back, and your urine is dark and foul smelling, those signs are indicative of a bladder or kidney infection. I’m in the middle of a UTI infection myself with those same symptoms. And I’m on antibiotics. I have no idea why your skin is peeling. Unless you have an infection there too. But I definitely don’t believe you should wait until your appointment. Could you not call your doctor and get your appointment moved up!?! I think this should be seen right away. I don’t understand why the ER said your symptoms aren’t life threatening. Any infection that is not taken care of certainly can be. All the best to you! And I certainly will be thinking of you <smiling>. Please get this taken care of fast! And take good care of yourself, Dawn

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Sylvia, It certainly looks like a UTI. You’d better get on IV antibiotics plus lots of saline solution before your fever causes even more damage. I’m glad you’re drinking lots of fluids, but more than that will be needed to lower your fever. I just got over a Urinary infection that came on suddenly. The fever dried up my skin and mucous membranes. Your skin and hair problems sound similar. Please: Get to the ER. . . Doug

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In article <016e01be37ae$833b6ea0$b5844…@jholan.online.no>, jho…@ONLINE.NO (John Holan) wrote:

|  He did his best with the ER, trying to remain calm and | explaining to them very clearly what I am experiecing.  He is good to me and | I could not ask for more from any man. | | Please, if you have had this occur, let me know.  Oh, BTW, when I cath, my | urine is very dark no matter how much water I consume, and the smell is | terrible. Sylvia, No medical training here, but it appears to me that you have a bad bladder infection and that it might have gone further! Your husband may be wonderful, but right now you need him to get approaching histerical – don’t let them turn you away at the ER! — Take care James (#11)

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Hi Sylvia! Dark urine, pain in your back. . .well, I’m no doctor, but this sounds like a kidney infection to me.  I don’t know why they told your husband this is not an emergency.  Do everything possible to get some help before something else happens. The other symptoms you describe may or may not be related to a kidney infection.  All I know is that our kidneys are vital organs.  I don’t know what happens when they do not function, but I wouldn’t doubt something like this is possible. Get yourself into a hospital any way you can.  This is important! Best wishes to you with this. Sylvia

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Yes I agree Sylvia!!! Time for Doctor’s Visit for sure!!! And because our "Urine Sensation" is less than for "Normal" people, we often urinate less frequently and empty less, thus "inviting" bacteria to cause Urinary Tract Infections and Bladder Infections, which untreated can lead to Kidney Infections, Pyelonephritis, etc. Janet – Hide quoted text — Show quoted text -SYLV77 wrote: > Hi Sylvia! > Dark urine, pain in your back. . .well, I’m no doctor, but this sounds like a > kidney infection to me.  I don’t know why they told your husband this is not an > emergency.  Do everything possible to get some help before something else > happens. > The other symptoms you describe may or may not be related to a kidney > infection.  All I know is that our kidneys are vital organs.  I don’t know what > happens when they do not function, but I wouldn’t doubt something like this is > possible. > Get yourself into a hospital any way you can.  This is important! > Best wishes to you with this. > Sylvia

– Janet Gaitor Portland, Oregon Co-Founder/Co-Producer Living With Disabilities http://www.medsupport.org

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On 4 Jan 1999 09:10:14 +0200, jho…@ONLINE.NO (John Holan) wrote: >Hi all, >Hope that everyone is recovering from the holidays.  I have a couple of >questions that need answering ASAP! >First, I must preface this by telling you I am not able to see my PCP for 3 >weeks

Sylvia, You probably have a bladder and/or kidney infection.  The skin problems may or may not be related.  However, this cannot wait three weeks.  You PCP must have left someone in charge, if he is not available.  Call the office immediately and tell them about the fever, foul smelling urine, and pain. Letting this go for three weeks can allow a bladder infection to spread to the kidneys where it can do serious damage or a kidney infection to begin to damage the kidneys. Kate

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Question:

– Hide quoted text — Show quoted text – I have spent a miserable last two and a half days dealing with yet another infection – this time a UTI (urinary tract infection). I am on my third antibiotic, in a relatively short period of time. I went from thrush, to a cellulitis (wound infection) and now a UTI. I know I’m not the only person here on prednisone and methotrexate, does anyone else have problems with low resistance? I’m beginning to feel like a real PIA having to call my doctors office so frequently. Toni

You could try pigging out severely on yoghurt to help counteract the effects of the Antibiotics yeast problem. It works for me. Don’t need to feel lonely I am here. I do not take the meds that you are on but I do know what infections are like & what side effects Antibiotics have. It was one of my family members who discovered penicillin & boy you can’t pick you rellies can you ))) All the best Brenda Down Under

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well toney i know what you mean its’ two and half years wheel chairs and all the other stuff now i am on one more that you are neoral its a awfull thing but the only thing to do now  then a brain tumor then found i have been having strokes for many years the meds even make that a problem  i know about loney understand they don"t know that pain what happens with 80 mills of pred write get better  Ruth

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Hi Ruth – I don’t believe I’ve seen you here before.    Nice to meet you.    Toni is a very nice lady who’s been posting here for years, and she helps many here with her vast knowledge and good nature.    It was very sweet of you to post to her in her time of need.    It looks like you’re going through quite a bit yourself.    I know Toni will e-mail you, so long as she sees the message, but I hope you two will decide to carry on your conversation here rather than in private. I get the feeling I would benefit from it, and I suspect many others would, too.    Maybe you’d get to know "lonely" a little less well, also. Take care, Cush. Posted to a.s.a Foofer263 wrote well toney i know what you mean its’ two and half years

wheel chairs and all the other stuff now i am on one more that you are neoral

its a awfull thing but the only thing to do now  then a brain tumor then found i have been having strokes for many years the meds even make that a problem  i

know about loney

Response:

Hi Ruth – I don’t believe I’ve seen you here before.    Nice to meet you.    Toni is a very nice lady who’s been posting here for years, and she helps many here with her vast knowledge and good nature.  

I have to second this. Toni was a great help when I was having problems recently. Toni, I hope you get felling well very quickly. Steve http://www.zoomnet.net/~steve

Response:

When I was on methotraxate…(and am still on prednisone) I had a UTI that progressed to a very serious kidney infection…(pyelonephritis) so they took me off the methotraxate…which worked so wonderfully for me . Prednisone makes you immunocompromised. . I take echinacea and zinc lozenges to raise my immunity. They do seem to help, as does 50mgs of Co Enzyme Q10. Don’t take that as often as I’d like though…. $$$!!

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Hi Ruth – I don’t believe I’ve seen you here before.    Nice to meet you.    Toni is a very nice lady who’s been posting here for years, and she helps many here with her vast knowledge and good nature. <

Cush: I’m impressed, you had something nice to say to sombody.  The stick fell out I guess. Porter

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Dirty Bob – I have nice things to say for everyone who hasn’t proved categorically unworthy. <g For you:    I’m glad to see you making an attempt at original humor, feeble as it was, rather than continuing to recycle those potty-mouthed 4th graders’ stuff. Cush. Porter ent wrote I’m impressed, you had something nice to say to sombody.  The stick fell out I – Hide quoted text — Show quoted text -guess.

Response:

Toni, hang in there and log on frequently, it really helps me to read and share other’s stories.  It is a home away from home, when we can’t go anywhere except the bathroom and bed and maybe watch tv with our families for awhile.  I couldn’t bear it without this group!

Response:

Hi Ruth and welcome. I see you have met a few others here, I’m so glad you responded to my post. I’d love to talk, so please feel free to email me if you’d like. It sounds as though you have had a really difficult time of late, I would love to share stories. There are many good people who post here in this newsgroup, I’m sure you’ll meet them all. looking forward to Toni

– Hide quoted text — Show quoted text -well toney i know what you mean its’ two and half years wheel chairs and all the other stuff now i am on one more that you are neoral its a awfull thing but the only thing to do now  then a brain tumor then found i have been having strokes for many years the meds even make that a problem  i know about loney understand they don"t know that pain what happens with 80 mills of pred write to get better  Ruth

Response:

I have spent a miserable last two and a half days dealing with yet another infection – this time a UTI (urinary tract infection). I am on my third… I know I’m not the only person here on prednisone and methotrexate, does anyone else have problems with low resistance? I’m beginning to feel like a real PIA having to call my doctors office so frequently. Toni

Hi Toni, Believe me, you’re not alone!  When I first started MTX, my RD warned that I might be more susceptible to infections.  And boy, was I!!  I got lots of weird infections that I had never had in my life.  And I lot a real nasty pneumonia. But, after a year or so, I stopped getting lots of infections, and hardly ever get them now.  But I developed a real watchful attitude and try to be extra careful.  I make sure to ask for an antibiotic if I am ever hurt, and try to stay away from obviously sick people in public.  Recently I waited forever for a turn in a restaurant bathroom, and then heard the occupant discussing having a stomach flu with someone who came to check on her.  I turned around and left! But if the MTX helps, it’s something I’m willing to put up with.  And do remember, it does get better!  And lots of people report that this increased rate of infection does not happen to them.  So hang in there, kid! Hope the UTI is better. Sandy F.

Response:

Welcome to our little corner of the world Ruth.  It sounds like you are going through a lot.  I know from experience, how these diseases can isolate you from the world if you let it.  You need to keep fighting back and reach out to people, just as you have with this letter.  If you would be interested, I am sure that many people here would like to hear more of your story.  We can learn so much from each other.  Everything from recipes to coping skills and everything in between.  And if you would like to become an active member of our little on line community, you would be more than welcome.  The things we do here and talk about etc.. may seem trivial on the surface, but really have a huge impact in making us all a part of a group, and and keep us interacting with people.  And that really helps to make us feel less lonely. You are not alone.  We are here and we care.  Post as often as you like.  Welcome to the group. Char Le Fleur – Hide quoted text — Show quoted text – well toney i know what you mean its’ two and half years wheel chairs and all the other stuff

Response:

I’ve been on MTX for l4 yrs.  For the first couple years every time I went to the dentist  to get my teeth cleaned I would develop an abscessed tooth about a week later, necessitating a root canal.  It took me a couple years to connect this with the MTX.  I then started taking an antibiotic before dental procedures and no more trouble.  I also developed a severe kidney infection a year or two into MTX but have done extremely well since then in that respect.

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Dirty Bob – To quote Miss Piggy, "Don’t bite off more than you can lift."

Okay mighty hunter, what does that mean? Porter

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I’m like that too, LadyAndy.  If it weren’t for this pesky RA thing my immune system would be great!  They even put me on an IV Chemo drip and it didn’t even put a dent in it.  My IS finds it’s way around everything!  But I don’t get colds, flus or infections so I guess it’s a little silver lining. Kitty

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No, no.    Everyone gets lots of chances.    One member, a particularly crusty old m**se f*rt, is up to number 237, and still counting. <g    But you should be aware that recidivism has its price. <g Cush. SpyMom007 wrote – Hide quoted text — Show quoted text -does this mean you don’t forgive and forget??  Just curious….

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I have spent a miserable last two and a half days dealing with yet another infection –

Sorry to hear about that.  Hope you are feeling better soon. I’m beginning to feel like a real PIA having to call my doctors office so frequently.

Remember, that’s what they are paid for. Sarah L "The problem with people who have no vices is that generally you can be pretty sure they