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Hi Fellow Experts!

I am a 50 year old “MILF” with a great sense of humor and a pain in the butt to match! I have had a jpouch for 24 years and need your opinion. Unfortunately, I had a 1 step jpouch surgery after severe UC and NEVER had an illeostomy. I have had chronic pouchitis (Cipro & Flagyl) for 22 years. Urgency, dehydration, ulcerations, loose stools. Accute every 6 months and never fully well. I have spent most of the last 25 years looking for a bathroom. Lots of gas.  I want to be more active (tennis, hiking, travel to see my sons in college). But, I’m always exhausted. I have a lot of allergies and sensitivities and get worn out easily. If possible, I’ll see about a loop illeostomy to try it out. I want to know if you felt well when you had your illeostomy. Did you still have nausea, exhaustion, loose stools long after surgery. I want to have a better quality of life, but I don’t want to ruin what is left of my looks (and feeling free of attachments) if I will still be tired and emptying my bag constantly. On an average day I go about 12-15 times. If I live to be 80 years old, that is another 164,250 trips to the toilet! I’m pooped out. Thoughts?

Valerie

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I had a stoma for half a year, but I cannot tell for sure how good it can work, because I had a mild chemotherapy at the same time after my surgery for bowels cancer (at the same time my colon was removed and the pouch was built).

I heard from several people that a stoma can help to get rid of inflammation and meds when everything else fails. I was recommended it myself by doctors in hospital, as I have a chronic pouchitis for 17 years now. But I can keep it in check by occasional use of antibiotics quite well in the last 18 months (before I had antibiotics treatments only at hospital, when I was already completely exhausted).

A loop ileostomy has the advantage that it may be reversed to the pouch again if you don't feel better. And it can on the other hand be changed to an end ileostomy, which is easier to care of, if you want to keep it. But in the end it is another surgery and a harm to one's physical integrity, as you mentioned. So not an easy decision, I'm struggling myself.

I would also consider Scott's advice about biologics. I'm through most of the latest meds for UC / Crohn's, but none of them made a change for me.

It is a very personal decision, but I had an end ileostomy for 1.5 years and I felt awesome.  No medicine- no pain - no urgency.  Emptied the bag 6x a day.  I decided to go for the JPouch, and I have some sort of Pouchitis before I even hooked it up.  For me, I know I can always go back.  I think you should try to speak with ileostomy folks and see how their lives are.  Most I speak with are very happy.

Hi Valerie - I had my jpouch disconnected with an end ileostomy, and then had it removed a yr later, after 25 yrs with my jpouch (I have a few postings here detailing that trip).  Things are so different now, in a good way.  As Doug K mentioned, no medicine, no pain, no urgency, + no butt burn, no pouchitis/cuffitis, no abscesses/fistulas (so far, anyhow), no scopes, no imaging, no surgeries, no EUAs, etc.  I just couldn't see myself spending the rest of my life struggling with the issues I had.    I'd note that here was mucus drainage while disconnected - this of course disappeared when the jpouch was removed and I was closed up.  I did develop some urinary issues after the surgeries, but so far it's nothing I can't deal with.

Ostomies have their own issues - supplies = $$, peristomal skin care, clothing (I like to keep that sucker covered), etc., but for me, the pros definitely outweigh the cons.

There are a lot of good suggestions above that I'm sure you'll be considering and discussing with your docs, but if you have any questions re. disconnection, I'd be happy to try to answer.  There are a number of others who have been through this as well, hopefully they'll chime in with their experiences.  Best wishes.

I would also try Scott’s suggestion and possibly have a consultation with a doctor who deals with pouch problems.  If you do decide to have your J pouch removed, options other than an end ileostomy are the K pouch and the BCIR.  The latter two options have a surgically created internal pouch that is emptied 3-5 times a day at your convenience.  The stoma is flush with the skin, button hole in size, located below the belt line and covered with a small absorbent dressing. Most people who have one can eat almost anything they want and enjoy all of their customary activities.  Supplies to care for these procedures can be less than $100 per year.  There is lots of information about them and a list of doctors who are familiar with them on the Quality Life Association web site (www.qla-ostomy.org).  Please send me a PM if you would like to talk.

Hi Valerie.  I have had a j-pouch since 1996, and im a 56 year old milf lol.  I have had a very similar experience for the entire time until this year.  I tried everything.  I was exhausted from many trips to the bathroom, but burn, painful gas, bloating, accidents.....but i started taking metamucil capsules in January this year, and it has brought a level of normal back into my life.  I suggest you try before giving up.  I now go 5 to 6 times a day, more solid stool and i can sleep through the night without accidents, solid 8 hours sleep a night.  I can go for hikes, long walks, nothing stops me but tired feet.

Start your day with 2 metamucil caps before coffee or food.  Then with each meal, take 2 more just before you eat.  If you have snacks during the day, add 1 more.  If food is more liquid, take 2, if food is thicker you might need 1.  If you decide to have alcohol, take another.  Try not to eat after 9pm and make sure you go a couple of times before bed.  This is just fibre, not medicine.  It is completely safe and has improved my quality of life as a j- poucher 110%.  I wish you the best.  Give it a try, nothing to lose. 

Hello from uk everyone, I have been suffering with pouchitis for 3 years now. As soon as I stop antibiotics,  symptoms come  back within 3 days.  I decided to try keto diet... within a couple weeks it worked. I only take one metronidazole 200mg every 3 days only if I need it.   I have pouch movement twice a day and none during the night. Slowly I will introduce fibre and carbs again into my diet but at the moment I feel great.
Has  anyone tried keto before? What are your thoughts please?
Never give up trying to make yourself better.
Thank you

Hello from uk everyone, I have been suffering with pouchitis for 3 years now. As soon as I stop antibiotics,  symptoms come  back within 3 days.  I decided to try keto diet... within a couple weeks it worked. I only take one metronidazole 200mg every 3 days only if I need it.   I have pouch movement twice a day and none during the night. Slowly I will introduce fibre and carbs again into my diet but at the moment I feel great.
Has  anyone tried keto before? What are your thoughts please?
Never give up trying to make yourself better.
Thank you

A very low carbohydrate diet does seem to work for some people, and I’m glad it’s helping you. Some have reported that it took longer than a couple of weeks, but I suspect people vary enormously in how much carbohydrate consumption they consider “very low.” I didn’t get any benefit when I tried it, but I may not have tried it for long enough. I’m fortunate that I tolerate the antibiotics very well.

I’m very new to the pouch (4 weeks post takedown) and likely have already had pouchitis and a stricture so take my miserable pouch experience with a grain of salt. Everybody says it will get better?

I can however speak to the ileostomies. I had my end ileo for just shy of 1.5 years which allowed me to recover after an emergent colectomy and all the illness surrounding fulminant colitis. I returned to work after 3 months and worked 60-80 hour weeks for a year. Ate everything, nuts, corn, all raw fruits and and veg, burgers, beer. Hiked and biked. Glorious. The end ileo worked like a charm. I had thick output and emptied 4-5x per day. No leaks. Slept through many nights. Felt healthy despite still having a UC flare in retained rectum necessitating pred for the 5 months before stage 2. I consider that time with the end ileo to be when I felt my best in past 2 years.

I had stage 2/3 last December and a slew of complications that I won’t innumerate. I want to say the loop ileo was much more finicky. Looser output, emptying 10x per day. Plus tons of obstructions (which you won’t necessarily have).

Guess my point is don’t necessarily judge what life with an ostomy would be like based on the loop. They are notoriously poorly behaved compared to an end.  I don’t think I’ve gone more than a few hours in the past 7 months without lamenting the loss of quality of life I had with the end ileo, but my rectum had to come out and now I’m stuck with this f@“king pouch and seemingly every complication under the sun. Right now, I would take the minor inconvenience of the end ileo over this any day.

I hope you can keep your pouch and feel healthy but don’t view the ostomy as the end of the world. (BTW, I’m a female about 10 years younger than you and cavorted on the beach and in most of my old clothes with the pouch. Hardly visible. No problem.)

I would try meds before going ostomy route.  Antibiotics, budesinide (steroids), Imuran, and then biologics.  For me antibiotics alone didn't work, budesinide did but at the time doc didn't want me to stay on as maintencance (although some studies have been looking at using them for maintenance), and for me a combo of rotating antibiotics and Immuran is doing the trick-before I got to this dr willing to go down the med route with me I was contemplating the same as you, as my quality of life managing untreated pouchitis was no longer tollerable.  If my current regimin stops working, I plan to try every possible biologic before going the ostomy route.

Good luck!

@JJA posted:

I would try meds before going ostomy route.  Antibiotics, budesinide (steroids), Imuran, and then biologics.  For me antibiotics alone didn't work, budesinide did but at the time doc didn't want me to stay on as maintencance (although some studies have been looking at using them for maintenance), and for me a combo of rotating antibiotics and Immuran is doing the trick-before I got to this dr willing to go down the med route with me I was contemplating the same as you, as my quality of life managing untreated pouchitis was no longer tollerable.  If my current regimin stops working, I plan to try every possible biologic before going the ostomy route.

Good luck!

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