20 years with a pouch

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).

I also got my pouch in 2004.  Today my oncologist told me I don't need to do yearly check-ins any more.  I guess it's the 20 year mark?  So we hugged each other and said our goodbyes.  That is, unless today's blood work comes back funny. 

Twenty years for me too. Takedown was July 2004.

@kta posted:

Twenty years for me too. Takedown was July 2004.

Cancer for you too?  Or just j-pouch?  My takedown was in July 2004, too, or maybe August?  I was too drugged to remember specifics from that time.  Also the anesthesia messed with my brain for a long time after both surgeries.  Cancer treatment ended in March 2005.