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Hello everyone,  this has haunted me for years....just what causes pouchitis?  I had my colectomy due to ulcerative colitis in October of 2001.  So I've lived with a j-pouch for yes that long.  I have enjoyed the freedom of not having to live with meds such as steroids, Asacol, and enemas.  The alternatives of course are the frequent bathroom trips, and being somewhat careful of what I eat.  Not a 100% in check with that last part, until recently being diagnosed with prostate cancer.  Thankfully my cancer is not in an aggressive state PSA of 4.78 at an age of 56.  Still it's cancer and it's there.  Last discussion with my urologist is that he feels there's no need for any drastic treatment such as surgery, Prostatectomy, or radiation.  So that's a bit of relief.  So I'm in surveillance mode to speak.  Knowing this new health concern, I purchased Dr. Patrick Walsh's book "Surviving Prostate Cancer."  In his book I came across a section  where he talked about the two biggest enemies of prostate cancer.  Red meat and dairy!!!  Whoa, okay I've cut back on my red meat where I'll have a steak maybe, maybe once or twice a month if that, but dairy was a daily staple.  Yoghurt everyday, sometimes two or three times a day.  His claim to this is that there is an enzyme in cancer cells that feeds on these two things, red meat and dairy.  It helps the cancer to grow and spread.  So needless to say I have cut those two things out of my diet completely, with a little cheating here and there, but mostly I'm well aware of it now.  Since stopping the dairy I have noticed a big, I mean big decrease in my Equate gas relief capsules that I would take by the bottle full.  Sooo, it took this long to figure out that dairy was a big cause of all my intestinal rumbling.  I'm not sure if Greek yoghurt is okay or not but at this point I don't even want to risk feeding the cancer anymore than I have to.  My diet at night for the last few years has consisted of a mega size salad with a base of romaine lettuce and spinach.  From there I'll add in the extras and I don't use typical salad dressings, they're too heavy.  I have switched to rice vinegar, Nakano, and extra virgin olive oil.  I keep my weight within my BMI and regularly exercise with long distance bike rides.  I will say there is a bit of discomfort on a 4 to 6 hour ride, and when I do eliminate on a ride like that and when I can, it's weird how I gain energy from that bit of relief.  So here is my long winded question, sorry folks.  With cycling as my exercise of choice and my passion, I have had and enjoyed many great rides on my road bike.  Just this summer I have logged in over 1500 miles on the road.  Most days I usually get through the saddle soreness okay and just bite the bullet and live with it.  Well two weeks ago I went on a week long bicycle journey which was an organized ride across my state.  It's the largest ride in the state and it's called the "Mountains to Coast" ride.  It started in the Smokey Mountains and was going to end up on the coast until it got called off due to the rain.  You ride everyday, with varying distances from 60 to 80 miles a day.  So this was my big ride for the year and I was bound and determined to do it.  I kept up with the daily rides no problem.  Heck I even surprised myself.  And the one thing I made sure of that I had plenty on hand of was Aleve.  Oh yes I wanted this to deal with saddle soreness and the little aches and pains which accompanied the ride.  Now the ride started on Sunday and it got called on Thursday.  So Thursday was our last ride day and we got bused home on Friday morning.  By Saturday I was eliminating water and my gut ached pretty bad.  I had no problem eating, it was just what was coming out on the other end.  Coincidentally I was scheduled for a pouchoscopy on the following Tuesday.  So gladly I went for my sigmoid procedure and in viewing my pouch, my gastroenterologist saw an inflamed pouch and on the cuff too.  Results of the biopsy were negative so that's a relief.  Now I'm on Cipro and Metronidazole oh and yes a suppository for the cuff.  I am feeling better, hate the side affects of the meds but considering this is the first, yes first pouchoscopy since my surgery, guess that's not too bad.  I know I should go for regular checkups but just felt so good that I always put it off.  Anyway, and yes again my question to anyone here that does long distance cycling, the question, is pouchitis brought on by continual cycling or was it the amount of Aleve I could have been taking to deal with the muscle soreness?  I Googled the same question, "what causes pouchitis" and it took me to the Clevland Clinics website and on there one of the causes was NSAIDS as a contributor to pouchitis.  I want to ask my gastro doctor this question since I found this information out after the visit I had with him last Tuesday and get his advice.  I just hope and pray it's not the cycling that did it as I would like to continue doing these once a year week long rides.  It's a target that I want to shoot for to keep myself in check.

    Thank you to anyone who can elaborate on this topic.  I would like to know your thoughts, opinions.

Stay well, stay healthy.

SMD

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Pouchitis is a form of inflammatory bowel disease.  All IBDs are caused by autoimmune disorder.  Thus the same autoimmune defect that led to the form of IBD that caused your surgery likely caused the pouchitis as well.  Surgery does not cure autoimmune disorder.  It cuts out inflamed tissue.  The process that caused the inflammation is still at work in your body.

Yes, Aleve or any NSAID can cause pouchitis. It's well documented. When taking those meds for migraines, I got pouchitis. When I took just a couple of Excedrin (which I didn't realize is another NSAID, as is regular aspirin) I had bleeding but not pouchitis. I was put on a soft diet for a week and things were fine after that, but I won't be using any of those meds anymore.

Rose

If I were you I would not automatically conclude that the Aleve caused the pouchitis and if you stop the Aleve, all will be well.  It's true that NSAIDs can cause pouchitis but more often they cause bleeding and ulcers and usually only when used excessively.  These kind of nonmedical-expert cause-effect conclusions are dangerous.  Also, if you were on antibiotics and they improved your symptoms, that is a sign to me that perhaps it wasn't the Aleve.  Aleve doesn't create bacterial overgrowth.  If the antibiotics worked, they worked because they killed bacteria that was causing an inflammatory response.

 

There are lots of threads on this board in which posters look for easy scapegoats, but sometimes the easy scapegoats do not exist.

Last edited by CTBarrister

Steve,

Some clarification might help here in light of other responses you've received. My pouch is 23 yrs. old. The first time I had pouchtitis was about 8 yrs. ago. I was indeed using NSAIDS frequently, as I often had migraines and found that NSAIDS worked well in stopping them. I probably used NSAIDS over the course of a few months. Then I began having frequency, urgency and leaking. This continued for a couple of weeks. Then came the lower back pain and extreme fatigue for about a week. Last came the bleeding, which caused me to head for the emergency room.  I was hospitalized bec. of the bleeding and was given tests. I did have pouchitis which included some ulcers. I was treated with Cipro, Flagyl and cortisone enemas. I was fine after this episode. This wasn't bacterial overgrowth, but it was treated the same way with antibiotics.

 

My next episode was about 4 yrs. ago. I had 2 Excedrin tablets (not realizing they, too, were NSAIDS), one in the morning and one later in the day. By the evening I had some very light bleeding. I had no other symptoms. I was referred by a nurse to the G.I./pouch expert M.D. (this was a weekend), who actually told me this was a clear reaction to the NSAIDS. He told me to stay away from fiber and eat soft foods for a week or so, as the small intestine lining is very delicate and it needed to heal. He would not prescribe meds, as there were no other symptoms of pouchitis and this event came on very suddenly. He did warn me that if it didn't resolve rapidly, that I should call again. His on-call nurses actually stayed in touch all weekend. This problem did rapidly resolve and I've been fine in the ensuing (NSAIDS-free!!) years. 

 

NSAIDS can cause GI ulcers and other mucosal problems in people having normal GI systems. Those of us having j-pouches are even more at risk because we are using our small intestines as a holding tank. Our ramped-up autoimmune systems may also contribute to this sensitivity. In 23 yrs. with the pouch, I've had only these two episodes of bleeding, one being pouchitis and the other irritation which was nipped early and didn't develop into pouchitis. Had I continued taking Excedrin, I have no doubt that I would have had full-blown pouchitis with ulcers, as in my earlier case.

 

I am relating what happened in my case in hopes that it can help another. I would definitely consult with my doctor and follow up on this. I'm not making random cause-effect here. G.I. doctors made the diagnoses with my history in mind. I would not assume that your situation is NSAIDS-induced until you speak with your doctor. It's always best to check things out. We are indeed very special beings with our unique plumbing.

Rose

 

 

Last edited by roseviolet

whoa that's an interesting piece of news about the link, whether it was the actual cause this time or not.

but whatever you do, please do stop taking NSAIDS its a definitive no no for people with known gastrointestinal issues.

 

I have a friend who probably caused 5 strictures along her gi tract post jpouch installation 30 years ago because of regular NSAID use. she had figured that colectomy killed the UC so no need to worry about NSAID use any longer. CC docs made that guess. She has to get dilations routinely for said strictures, but maybe doesn't have a revised dx of Crohn's and "merely" stricture complications.

curiously as well. I am in the midst of an endurance training small research study with my doc. I run half marathons and am training for my 2nd marathon, a couple of years ago, after running 17.5 miles I went in for a routine dilation pouchoscopy and my jpouch was a train wreck. this led to the supposition from my doc that my endurance running was the proximate cause, so that's a long winded circle back to perhaps the long endurance rides aggravate the jpouch. I will be very curious to see the results of this study.

Originally Posted by CTBarrister:

If I were you I would not automatically conclude that the Aleve caused the pouchitis and if you stop the Aleve, all will be well.  It's true that NSAIDs can cause pouchitis but more often they cause bleeding and ulcers and usually only when used excessively.  These kind of nonmedical-expert cause-effect conclusions are dangerous.  Also, if you were on antibiotics and they improved your symptoms, that is a sign to me that perhaps it wasn't the Aleve.  Aleve doesn't create bacterial overgrowth.  If the antibiotics worked, they worked because they killed bacteria that was causing an inflammatory response.

 

There are lots of threads on this board in which posters look for easy scapegoats, but sometimes the easy scapegoats do not exist.

That's the thing, I had acquired the pouchitis while on the week long ride and it just so happened that I had a sigmoidoscopy the following Monday after the ride.  That's when my GI saw an inflamed pouch and put me on the meds.  Things have vastly improved for the better.

Originally Posted by Scott F:

Good news: Cycling does not cause pouchitis. You might try Tylenol as an alternative treatment for minor pain, though pay attention to the dose limits on the label and avoid significant alcohol consumption while taking Tylenol.

Scott, thank you for the Tylenol suggestion.  I'll give it a try with caution of course as you said.

Steve

 

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