I would try keeping it Valerie, have you tried Rifaxin daily use 550mg once a day. ?

Hi, @ValerieK. If the antibiotics stopped working for me (I’ve been on them for 13 years) my next step would be to try a biologic medication before considering surgery. Is there a reason that’s out of the picture?

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.

I would try biologics before I throw in the towel.

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

@Elena Andreou posted:

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.

Hi Scott , thank you for your reply,

I understand you have found a balance with the antibiotics you are taking which is fantastic. I’m still experimenting, my consultants are great but I find they contradict themselves with their advice.
Hopefully high fat low carb will help.

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'm currently in the process of getting a jpouch redo

I went back to a loop and physically I'm better. No more gas pains or cramps. Not sure if I'm gaining weight as I had a blockage last week and didn't eat so I assume I lost weight again

Just mentally it's hard to deal with. My stoma changes sizes so much and I have nightmares

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!

Your resilient

I don’t know what it’s like to have pouchitis for all that long, but I’ll never forget the agony of it.  I didn’t respond all that well to the antibiotics and as soon as I would go off of them, my pouchitis would be worse than ever.  I hated taking the antibiotics. My gastroenterologist prescribed me a certain probiotic ( I forget the name of it), but it worked better than the antibiotics and without the terrible backlash when I went off of them. The problem for me with those probiotics was that I couldn’t afford them. When I let my doctor know, she gave me samples of a different probiotic, Florastor. Gradually the pouchitis went away completely.  I still take half a dose of it per day.  I’ve tried stopping a couple of times and felt it starting to come back after  2 or 3 days. Besides that, I had to steer clear of all corn products for a few months (it’s surprising how many processed foods contain corn and how many different ways that manufactures label corn products on ingredient lists; it’s very tricky).  Anyways, I know not everyone is the same; and what works for one may not work for others.  Hopefully this will help you or someone else looking for a possible solution to pouchitis.

I was diverted to an end ileostomy for 6 months before I had my j-pouch removed. If you are going to get diverted please don't get a loop. I had the loop during my j-pouch surgeries and it was horrible. That is why I didn't want to go to an ileostomy and held onto my j-pouch too long. An end ileo is night and day different than and temp/loop one.

You will not have to empty the bag 12-15 times a day and will spend much less time consumed by your bathroom trips. There's some sexy lace underwear made especially for people with ileos if the intimacy question is holding you back some. It is sold by Ostomysecrets a Convatec company. I also buy my underwear from them. There are also bag covers you can use and I think they are for sale on etsy.

You might want to read some of the threads in the Ostomy category about those of us who had our  j-pouches removed.

Take care