Progress after J-Pouch surgery

Big DH, what things have you tried so far to manage the number of bathroom trips? Any bowel slowers, like Imodium or Lomotil? Any bulking agents, like soluble fiber?

Hi Scott, thanks for your reply. The surgeon recommended Imodium (Loperamide) 10 days after the surgery and have been consistently taking that...usually 2-4 a day. I also started Citrucel (non-fermentable fiber..i.e., no gas) about 2 weeks ago. Both are having a slowing affect but I continue to have very strong urges with frequent leaks that force bathroom trips. Overnight I've had full BMs while asleep often requiring showers in the middle of the night. Today I had a pouchoscopy so having taken no supplements yesterday or today I'm starting anew to see how things will be now without anything and add fiber and/or Loperamide as needed. Are these strong urges normal after nearly n early 3 months?

Some folks reports that their pouches take quite a while to settle down. Did you get any report on what the pouchoscopy showed? What’s the consistency of the stool? It’s possible to develop pouchitis this early, but it isn’t very common.

The Dr did not mention anything after the exam today though I do have an appt next week with her as a follow up. Yes I've heard about pouchitis and that has been suggested. But the frequent bathroom trips is what is troubling me as traveling anywhere is a big question due to the need to make these frequent trips. Perhaps pouchitis is the cause of the frequent trips and maybe I just need more time and effort in resisting these urges.

If you’re getting leakage then it’s a good idea to get professional guidance, as you’re doing. Hopefully the pouchoscopy (whether it showed anything or not) will give the doctor a good idea what’s best to try next.

Scott, thanks for your thoughts and input...very much appreciated! I never had issues with leaking before UC or during. Just don't understand why this is now occuring as it does contribute to the frequent bathroom trips.

I am almost 6 years in and I still go 13-20x a day. You get use to it after a while. Since you are only 3 months in, try giving things a chance, I promise it gets easier after a while. Close to a year after surgery, everything felt normal.

I am coming up on celebrating 6 years soon and everything is fine for me. I hope the same happens for you too overtime. 

Lauren, thanks for your input and story. Were you told that you could expect that number of bathroom trips? It was my understanding that the bathroom trips would decrease over the next several months up to a year to no more than 5-6. If I see no decrease in that time I will seek an ileostomy.

@Big DH posted:

Lauren, thanks for your input and story. Were you told that you could expect that number of bathroom trips? It was my understanding that the bathroom trips would decrease over the next several months up to a year to no more than 5-6. If I see no decrease in that time I will seek an ileostomy.

Yeah, I was told before I got my J-pouch surgery that I would go 16X a day at first and that it would decrease to 6X a day in the long run, that has never happened lol. When I got my J-pouch surgery I was going around 30X a day, but now its 13X-20X a day. But only 9% of the J-pouch Community goes 13X or over a day, so its not really common. I just so happen to be in that 9% and maybe you too. You get use to it over time. I talked to other people like us and we get through life fine. 

Everything has pros and cons in life, if you never have any problems with a J-pouch other than going a lot, in my opinion its not worth removing. Ileostomies can have problems too over time. I had problems with my ileostomy in the past (Too many blockages to count). So I would give things a chance if I were you and see if you and your J-pouch can work together. Everything is hard at first. 

My takedown was Feb 26, so  6 1/2 months. My colon ruptured after a bad colitis flare up while I was in the hospital.  I'm probably at average 8 times now but it took me awhile and its frustrating for sure. My surgeon said he's seen people get there much sooner, and some much longer and I'm about average. I dont take any fiber as it always makes me miserable and my bowl movements double to triple. I also don't take immodium except occasionally. I'm up on average once a night. I eat anything except havent braved many veggies or tried salad yet. Right now I am on Flagyl for ten days for suspected pouchitis and it is helping. This is my 3rd time on antibiotics. I've been frustrated at times, angry, sad, depressed, but in the end if I  look back I see so much improvement month to month and I know I will get there eventually. It just takes time. At 3 months I was going a lot more and so envious of those people that were just out there living life with a j pouch. Give it time because for some of us that's what it takes. I know a year from now my life will look much different and I just focus on that. Dont give up! 

Lauren, thanks again for talking.about your experience. I really looked forward to getting rid of the ileostomy for the J pouch having too high of expectations it seems. I had no issues with the ileostomy, no blockages, though I had some challenges with the barrier at times as the "temporary" ileostomy was not a grade "A" effort. Just did not expect all the urgency and needed bathroom trips after the takedown surgeey..yes, have to be patient and we"ll see.

KMiller, thanks for detailing your journey...patience seems to be the most important quality and good to be reminded by those who have gone before. Next week I'll be at 3 months and it has been an experience. Part of this has been frequent leaks which are more common over night. Then there are the seemingly endless feelings of urgency not counting the 15+ bathroom trips daily. But I'm hopeful of improvement over time as you mentioned. FYI, I've done the fiber (Citrucel) and it can help if you have a lot of loose/liquid bowel activity. I've also done Imodium (Loperamide...the generic) which does slow things down but can make bowel activity in the bathroom take longer! Currently I'm not taking anything and doing ok except for the urgency and the number of bathroom trips. Thanks again for sharing your experience.

@Big DH posted:

Lauren, thanks again for talking.about your experience. I really looked forward to getting rid of the ileostomy for the J pouch having too high of expectations it seems. I had no issues with the ileostomy, no blockages, though I had some challenges with the barrier at times as the "temporary" ileostomy was not a grade "A" effort. Just did not expect all the urgency and needed bathroom trips after the takedown surgeey..yes, have to be patient and we"ll see.

Of course! And yeah I totally understand! I think most people that are in the 9% of the J-pouch community that have 13BMS or more  everyday do not expect that to happen. I think all of us 9% people were hoping to go 6X per day but sometimes things turn out different. And maybe its for the best too. If you have any special questions about anything please do not hesitate to ask, us 9% people got to stick to together

When you return to work/school definitely let your teachers and bosses know your poop situation. 

I am happy to hear you did not have any blockages, blockages are painful AF!!!

I’m 3 years post takedown and i still go 12-15x a day, which is normal for me. I take 2 Immodium a day and i often wake up 2x (sometimes 3-4 per night) to go to the bathroom.

My doc said before I had the surgery and after that the amount of times to expect to go varies per person- there is no “normal” anymore. It all depends.

I hope this helps a little and you find that things continue to get better!

@Bubba1028 posted:

I’m 3 years post takedown and i still go 12-15x a day, which is normal for me. I take 2 Immodium a day and i often wake up 2x (sometimes 3-4 per night) to go to the bathroom.

My doc said before I had the surgery and after that the amount of times to expect to go varies per person- there is no “normal” anymore. It all depends.

I hope this helps a little and you find that things continue to get better!

9% of the J-pouch Community goes 13X or over- I love my 9 percenters

Haha LaurenofEmeraldCity- “we have to stick together” haha. True!
I keep hoping it will get better but I’ve decided this is prob as good as it gets for me. I’m okay with that. Still better than what it was pre-surgery! No diapers here! So that’s a win! 

@Bubba1028 posted:

Haha LaurenofEmeraldCity- “we have to stick together” haha. True!
I keep hoping it will get better but I’ve decided this is prob as good as it gets for me. I’m okay with that. Still better than what it was pre-surgery! No diapers here! So that’s a win! 

Lol I know right!! And yeah I totally understand where you are coming from, I just learn to accept things I cannot change. I definitely agree, we are definitely in a better place than we were at pre-surgery. I will take the multiple bathroom trips over a sick colon any day. And yeah! Same here, I have not worn diapers in almost 6 years, definitely a win too! Lol. 

Anyone had/have experience with rectal pain from bowel activity? I've been using a barrier paste by Coloplast that helps. I'm 3 months tomorrow since my take-down surgery and still adjusting to frequency and some not so fun irritation... :-)

@Big DH posted:

Anyone had/have experience with rectal pain from bowel activity?

when you say rectal pain....  do you mean a burning/itching sensation, during a BM or due to wiping so often ?

If it’s a skin irritation issue or an anal fissure, then I find applying ilex protectant paste is by far the best product to use and, after years with either an ileostomy or a j pouch; I’ve tried em all.

The vast majority of J pouch recipients, probably have 5 to 8 BMs per day; not everyday, some days, it could be 4; other days it maybe 2.

J pouch surgeons, normally view a daily BM rate of 6 as a successful outcome.