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Hi All,

I decided to jump back on this forum after a very lengthy leave. I had my colon removed in September 2004 (can't believe it's been almost 20 years) and I remember my doctor saying "they can last up to 15-20 years or longer". I am paraphrasing and probably missing some nuances here. I do also remember having early issues with pouchitis and seeing posts back in the day that said something like "people with working j-pouches, are probably not on here". And that is definitely true as I've had a mostly successful j-pouch with occasional irritations, including occasional loss of blood here and there (the latter has been in recent years).

Well, just last week, I had a 24 hour time period of non-stop blood loss, to the point where I had to go to emergency. Luckily they put me on short-term antibiotics which fixed the problem right away. But being honest, the worst case scenario came to mind... that maybe this was the end of my j-pouch lifespan. My wife is now putting me on a strict 2-week diet that includes no carbs, no spices, no grains, no sugars, no gluten, etc. and I am grateful for her as her thinking is that I reintroduce foods bit by bit to see what works and what doesn't. Obviously, my goal is to have this j-pouch forever so if this means stopping my unlimited diet of eating whatever I want, then I am all for it, as I was clearly not being careful.

Anyhow, once my strict diet (or a cleanse of sorts) is over, do you guys have any tips on what to absolutely avoid moving forward? The details are probably unique to all of us but maybe there are things I should completely eliminate. One thing I have removed completely over a year ago is alcohol, but it was mostly to help me focus better at work vs. how it was affecting my digestive system.

Thanks and for those of you who just had your j-pouch... yes, you can live a long and fulfilling life with it! You might have to wake up in the middle of the night to go to the washroom, but other than that, it has been great!


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Is bleeding your only symptom? Pouchitis usually includes other symptoms, such as urgency, increased frequency, and/or leakage. Pouchitis can cause bleeding when ulcers develop, but bleeding is a routine finding in cuffitis. If you’ve been missing signs of pouchitis then one important step for the future is to treat pouchitis when it crops up. Pouchitis isn’t your fault, but it does generally need to be treated.

Pouches don’t have a specific life span. Yours can last the rest of your life with care and reasonably good fortune.

The evidence for dietary support of pouches is very weak. A few people seem to be able to prevent pouchitis with very low carb diets. Some people get good results with very potent probiotics, such as Visbiome. People prone to recurrent obstructions may have to stay away from foods that can become stuck easily, like mushrooms. People with specific food sensitivities do better if they avoid those foods. Many (maybe most) of us can eat whatever we like.

Hi Scott, thank you for this response. I had never heard of cuffitis until now and this might indeed be what it is. Although the antibiotics have at least calmed down the inflammation so far. Today is my last day on pills so I am going to add a lot of probiotics to try and avoid a relapse. I do hope to visit my GI soon for a new scope (it's time for it) and see if there's something else at play. Best, Eric

The usual treatment for cuffitis isn’t antibiotics but rather mesalamine suppositories (Canasa) or enemas. If that doesn’t work sometimes budesonide is added or substituted. Cuffitis is UC in the small bit of remaining colon (the rectal cuff) that the pouch is usually stapled to. You might ask your GI something like “do you think this might be cuffitis?” If he looks at you blankly then you might need an upgrade.

Hi Eric.  I had my j pouch surgery starting in September 2001and completed Spring 2003.  I had a lot of issues and the first 2 years were challenging with bowel blockages and learning what I can eat and what to stay away from.  No dairy raw vegetables fruit nuts seeds mushrooms spicy foods alcohol and limited sugar.  Carbs are one of my main staples especially rice and rice products and I avoid yeast breads.  I’m fine with gluten although I don’t eat much with it.  I’ve had grief with pouchitis and cuffitis and I had to stop constant antibiotic use because it made my neuropathy worse.  2 years ago I started Entyvio infusions and hung in there for 7 months but the side effects were worse than full blown UC.   When I was scoped I had no signs of pouchitis and my gastroenterologist believes the dose was too strong.  I also have grief right at my butt and use proctol suppositories nightly and always need barrier cream at the site.  At this point I’m seriously considering trying Entyvio again although I’ll self inject and try 1 a month?  I’m happy that the biologics are available and that there are so many more options now as prednisone was the main drug used in the 80’s and 90’s.  Probiotics I cannot live without especially the product called PRO BIOTIC 225 made by Ortho Molecular Products.  It’s expensive but worth the money I highly recommend it.  We are all individual and it’s all trial and error when it comes to our health and I hope you continue to do well.

Thanks Scott and Michelle for your answers. I'll discuss this further with my GI as soon as I can. I am off antibiotics for more  than 24 hours and so far so good. Taking lots of antibiotics and being careful with my food (very strict diet that I'll hopefully start stepping away from bit by bit to see what works and what doesn't).

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