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hi everyone, 35 yro NYC woman. J pouch for almost 3 years. Usually around 12BM per day. It's been tough. I want to believe it can get better. I want to believe I can be happy and pain free and have reduced frequency...anyone experience change after a long time of the same? I'm worried it's too far out for change now...also, I was recently diagnosed with SIBO. I have been followed the SIBO diet and find I'm not feeling much better...looking for any advice. Also, any fellow NYC jpuchers with awesome gastro docs...looking for a new perspective. 

Many many thanks

cody 

Tags: Jpouch, SIBO, advice, 12BM

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sorry for your pain and problems with the j.  i was there too, then got a k pouch.  i posted considerable info on SIBO and the diet, on this forum.  try a search under SIBO.  the diet made a big difference for me, but i could never go off of it.  no problems since the k!!  i'm in boston, but my gi doc is at columbia--dr. kiran.  i like him.  good luck. janet

J

I wish I could help with a doc in NYC, but I'm in Metro Detroit. I will say that when I started to have more and more problems after getting my j-pouch, I realized pretty quickly that regular GI docs don't have enough experience to really help. Like many others here, I headed down to Cleveland Clinic to get the best insight. 

Definitely look-up SIBO and Vanessavy on this forum -- lots of good info that might help you see where you are compared to others and see what they've tried. As for me, I put up with the constant medications and not having a life for 5 years before it got bad enough for me to throw in the towel. I got a k pouch this spring and am doing much better.

But we are all so unique, you won't know what's possible until you've seen a better doc who might be able to help you with the SIBO. Definitely search this forum for NYC doc recommendations. I also just remembered that there are several good GI docs that have left the Clinic in recent years. I think Dr. Remzi landed in NY. Maybe someone here can speak to their experience with him or his new office.

Blessings

Jen

JenJen

Cody,

The Kock Pouch we are referring to is a type of "continent ileostomy." It is frequently called the k-pouch because it is used for similar conditions as the j-pouch. (And I think because no one wants to risk not knowing whether to pronounce it "cock" or "coke" :-)

The procedure involves making a pouch from the small intestines to store fecal matter after the colon is removed, like the j, but that is were the similarity in design and function ends. While the j is connected to the rectum to simulate normal function, the k is evacuated out a continent value in the abdomen. Unlike an ileostomy which has an "incontinent" stoma requiring an appliance or bag of some sort, the k-pouch is designed using a "continent" valve that closes (only a small absorbent patch needs to be worn over it.) During evacuation, a catheter is inserted into the valve to open it and let the contents out. The other important detail is that most often the entire rectum and anus are also removed and the poucher ends up with what is colloquially called a "barbie butt."

In my case, I may have continued to battle my pouch problems with the j, but rectal problems and leakage complicated things further -- so the removal of that area was my primary motivation. The side benefit I realized, that I hear others also mention, is that k-pouchers can sometimes reduce their incidence of pouchitis. Some think this is due to being able to keep things "loose" -- you aren't trying to thicken your stool because there is no longer fear of leakage. And some cite the ability to irrigate the pouch being beneficial for cleaning out the organisms that might cause inflammation. However, pouchitis diagnosis alone is not usually the immediate reason for this type of procedure, due to the inherent surgical complications, possible continuance and the availability of alternative therapies. For more info, look up SKN69/Sharon's posts -- she is one of the most helpful and prolific posters here and has had a k-pouch for decades.

I hope you this helps and answers your question clearly enough :-) Also hoping you find a good doc to help you with your situation. In addition to the former CC doc above, I've also heard lots of good things about Janet's Dr. Kiran -- who was also formerly at Cleveland Clinic. Though he's a colorectal surgeon, you might be able to get a lead from his office on which GI doc to see there. I understand what you're going through and know it's hard to maintain quality of life like you are... praying for better days ahead!

-- Jen

JenJen
Last edited by JenJen

Hi

I have had so many courses back to back for SIBO/pouchitis. I had literally tried every diet SIBO, Fodmap, Paleo, low carb. I was on waiting list for pouch removal and then saw Forks over Knives documentary and a story by Tara Latham who has UC. But since I went essentially vegan (no eggs, dairy, corn, canola oil, meat etc) I have not taken any antibiotics for over a year and a half! I I eat potatoes, quinoa, millet and rice. Lots of fruit and vegetables, and it doesn't cause diarrhoea. But I do also use honey and maple syrup.

Lx

 

winter wish

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