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Chronic Pouchitis
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Chronic Pouchitis

I had my colon removed in 2004 because of severe ulcerative colitis.  My surgeon was able to perform a Restorative Proctocolectomy, so I have an internal J-Pouch.  Life with the J-Pouch has been tons better than with the rogue colon, but it has never been 100%.  My doctor and I have tried all kinds of medications to get it to calm down, Flagyl, Amitriptylin, Glycopyrrolate, Xiflaxin.  The only thing that has seemed to help was Ciprofloxacn, which then stopped working after a time and now works again in combination with Tindamax.  My surgeon would prefer me not to be continuously on two antibiotics and I would certainly prefer that too, but the alternative is not fun, cramping, constant bathroom visits and the worst is leakage at night.  Does ANYONE have any remedies, natural therapies, a different medication to suggest, really anything?  I have also tried a course of probiotics while not taking medication and my pouch just continued to get worse.
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14 Comments Post a Comment
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483733_tn?1326802046
Have they looked at your diet?  You may be eating too much fiber, sugar and/or spices.  I've had my pouch for 15 years and definitely the first year or so was tough but I eventually got into the habit of eating bulking foods (oatmeal, marshmallows, apple sauce, meats, eggs) and avoided heavy fiber foods and spices.  Eventually I've been able to eat anything but occasionally if I have too much spicy or too much salads or sugar I run into problems.  I assume you take an anti-diarrheal?
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Avatar_n_tn
Thank you for your response.  Unfortunately, even when I had Ulcerative Colitis, diet never seemed to make a difference.  However, I do avoid spicy foods because they do bring pain.  As far as anti-diarrheals, I have tried Imodium (immodium) but it seemed to make me feel like I had a blockage or constipation, but maybe I was taking too many or something.  
Thank you for the thoughts; I'd definitely appreciate any more you might have.
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483733_tn?1326802046
There are some other prescription drugs your doctor can give you - antispasmodics.  Do ask for those.  They can make a big difference.
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Avatar_m_tn
has anyone ever gone back to illeostomy after having on going problems with j- pouch ? need advice,i am thinking about removing j pouch,, never get enough sleep,,up 5-8 times a night,,always looking for bathrooms, anal area always sore ,,on going hemroids, occassional fistuals, on antibiotics ,,just wondering if life is any better with out j pouch  ,,looking for answers,,,please someone HELP
Thanks cka58
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1116682_tn?1258935282
I have UC and Ive had a j-pouch for 6 years now.. And have had nothing but problems. I had pouchitis which you talked about and have been put on the same antibiotics for years at a time and nothings worked. My doctor is now going to try the drug 6mp because I have fistula's and ulcers. He said if that doesnt work the drug called Remicade would be his 2nd option. Maybe you should ask your doctor about those two drugs as well. Cka58 I feel your pain its like a never ending battle with UC. Trudie thats strange you mentioned you felt like you had a blockage after taking Imodium (immodium) because after my surgery maybe 6 months after they started me on that and I ended up getting a blockage which they had to go in and correct. I always thought it was from that drug as well. If you want to slow down ur bathroom visits i'd say take metamucil. Hope everything works out for the best...
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Avatar_m_tn
I have Chronic Pouchitis.  I have had the pouch for 10 years now.  I have tried everything from diets to anit-diarrhea meds, anitbiotics and remicade.  Nothing has yet worked for me.  Have had the bag option in mind, but trying to hold off as long as possible.  I'm only 28.  I will be going over a reconstructive surgery for a possible new pouch.  I am up every 2 hours throughout the night and need to plan my day around the bathroom.  I am an athlete and this is probably the worst hold back ever.  Any thoughts??
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483733_tn?1326802046
I had what I thought was chronic pouchitis.  The meds were not helping.  I found that I had an overgrowth of yeast in my body.  Went on a few weeks diet of no yeast, gluten, sugar and added probiotics and took a supplement from a naturopath which killed the yeast and then went back to a normal diet.
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Avatar_m_tn
Talk to your doc about xifaxan.  It's an antibiotic that only impacts the digestive tract.  I've had chronic pouchitis since getting my pouch 11 yrs ago, and this is the only thing that helps.  I also take a small amount of probiotic in the form of yogurt every day.  That's counterintuitive with the antibiotic, but they seem to strike a better balance that with the antibiotic alone.
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Avatar_m_tn
I have had j-pouch since 1991 and last few years have had very bad pouchitis overflow incontinence. Pouch nurse gave me a Medina cathater which is a tube with which you can empty the pouch. I carry it with me all the time and has helps me keep the pouch empty. I have also started on a no sugar, no milk, no wheat diet plus daily use of VSL3 probiotic. Seems to be helping, especially the Medina cathater which stops (not completely but 80%) the incontinence. I recommend it.
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Avatar_f_tn
Hi, my name is Serina. I am 19 years old and I have a j-pouch too. I have had mine for about a year, and i have pouchitus. I am on humira, which helped at first but eventually stopped working. I went to see a nutritionalist who works with people who have chrones, bid, and uc. She has me on a diet that eliminates ALL grains. I eat a lot of cooked vegetables, protein from fish and chicken, and this wonderful bread called "almond bread". You make it from "almond meal" that you can find at trader joes. It is pretty much just pure almonds and eggs. It is amazing and never hurts my stomach! I strongly suggest you make some. Just type in "almond bread recipe" in google. Also probiotics, aloe Vera capsules, and a multivitamin are good.  If you can afford it, go to some yoga classes, get some reiki, and do some meditation. Hope this helps!
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Avatar_f_tn
I've had my pouch for over 15 yrs. I've had nothing but problems with it. We've tried all the above. Still have pouchitis every day & worse. I haven't had a nights rest in all that time. I've simply come to terms with it. For better or worse this is me. I try to think of all the things I would have missed altogether without it.
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Avatar_f_tn
I am a 51 yr old female who had UC most of my life. In 2007 I had a total protoctomay w/J-pouch and my life couldn't be any worst. I have nothing but complications especially with pain. I have severe pain and spasms in my anal and pouch area that if not treated I'm sure I would die from heart failure because this pain is absolutely intolerable. I have been on high doses of morphine since the day of my surgery. I take 15mg of morphine every 8 hours plus breakthrough throughout the day as needed. I have pouchitis all the time and now my pouch is ulcerated. I have incontinence through out the night. Go to the bathroom at least 7-8 times a day. I use to be a runner but now can have no physical activity because of my incontinence and frequent bathroom stops. If I do anything physical or lift anything heavy I through myself into spasm which then require more morphine to manage my pain. I'm tired, depressed and scared to think this is my life.

I have been seeing Dr. Bo Shen of the Cleveland Clinic who gives me alcohol and kenelog injections into the cuff of my J-pouch evert 6-months and at first this seemed to help with some of my pain and I was able to decrease my morphine intake. However, lately I feel little relief.

I haven't heard anyone talk about pain. Really need some advice and encouragement.

BG
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Avatar_m_tn
I had a brooke ileostomy before I got my "K" pouch and I wish I never made the change. I've had pouchitis over and over and it really wears you down. For me the ileostomy wasn't a huge issue but the wife wasn't too happy. Sadly the wife is now my ex and I live with this pouchitis everyday. Hope to make the change back and eat whatever I want and no longer have to deal with the pain.
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Avatar_n_tn
This procedure is not well known but is excellent.  Go to www.bcir.com and check it out if you are tired of your J-pouch not working correctly or still having to search for bathrooms every hour or so. Or if you tired of dealing with your Brooke Illeostomy not staying on or damaging your skin.  I have had UC for 15 years and finally all of the meds stopped working.  When my Gastro told me that I needed to have my colon out I was devastated.  I had researched the "bag" and was not pleased with the results.  I also was not excited about the J-pouch option as it did not seem to improve the quality of life much and so I looked further into the BCIR option.  I had a total proctocolectomy on 3/21/14 and life is getting better.  The BCIR is similar to a Koch pouch with an improved valve design so there is no incontinence/leakage.  I wish more Doctors knew about this option to at least give us, their patients more choices.  Dr. Ernest Rehnke from the Palms of Pasadena Hospital in St. Petersburg, Florida is an extremely talented surgeon and the staff at the Palms is fantastic.  Please at least check into this option and make an informed decision. I'm glad I did.  
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