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.

Thanks for the reply...any idea how Ilex protective paste compares with the Coloplast barrier paste or Calmoseptine? Thicker?

@Big DH posted:

Thanks for the reply...any idea how Ilex protective paste compares with the Coloplast barrier paste or Calmoseptine? Thicker?

It’s a long time since I’ve used other brands; all I remember is the relief and results achieved by way of the ilex paste, which I never experienced with other brands.

At the time, when I first got hold of a tube of ilex; it wasn’t available in the UK and all other brands were, either samples from my Stoma Nurse or on NHS prescription.

Thanks for the reply...samples are how I found out about Coloplast. A fellow j pouch recipient recommended Calmoseptine which works but tends to burn a little on irritated skin. I'll pick up some Ilex and try it. The irritation is undoubtedly a combination of frequency (15+) and wiping. But I only use wet TP and try to dab only. Fiber is also helping (Citrucel) by absorbing fluids and slowing things down a little. Been a long 3 months 

@Big DH posted:

I'll pick up some Ilex and try.

I got ilex sample sachets from my Stoma Nurse but when I contacted ilex for samples; I managed to convince them to send a full tube; claiming I couldn’t evaluate the product from a couple of sachets.

When wIping after a BM; initially, it’s best to use normal folded up toilet paper to absorb the excess a couple of times before wiping, then either wipe with toilet paper or wet wipes; I used wet wipes initially but somewhere along, I switched to just using toilet paper and can’t remember when, although, on average I only have 3 to 4 BM per day.

How is your diet? Any special types of food? Do you have 3 separate meals with nothing in-between? 3-4 BMs a day would be an unbelievable achievement...that includes overnight also? Are you taking any fiber or other medication (e.g., Loperamide...slows bowel activity)? Did you have a lot of BMs after the surgery and gradually got to 3-4? Haven't heard of anyone with a J-Pouch having that few.

No special diet, eat absolutely everything and anything; 
Just after creation of my j pouch and before takedown, I was advised to eat often throughout the day rather than 3 meals per day, which I followed initially but I just eat when I’m hungry, normally 2 meals per day plus snacks.

I don’t think I actually eat that much but since takedown (6 years ago), I’ve put on around 25lbs and although I still workout, I don’t go as often as I use to.

I’ve often wondered whether the amount a J poucher eats makes any difference to their daily BMs. 

Just after takedown, whilst still in Hospital, my BM were probably 6 to 7 initially but by time I was discharged, my BM were much the same as to what they are now; maybe during first couple of weeks, I did experienced a couple of night time BMs but this didn’t last.

I think initially, I use to take 2 loperamide 3 x per day but somewhere along, I started taking 1 loperamide 4 x per day, although  I tend to forget but I always manage to take one in the morning and one just before bed and the other 2, whenever  I remember; also, if my output is more loose than what I would consider normal, then I’ll take an extra 2 loperamide together.
My Surgeon advised, I should never take more than 6 loperamide per day, which I adhere to.

I don’t take any fibre either.

I don’t have 3 to 4 BM, every day, some days it could be 2 all day, then the next day 4 spaced out through out the day or maybe 1 in the morning, nothing all day then 4 during the evening.

It’s never less than 2 BM per day and very very rarely more than 5, although it happens; no night time BMs, never any urgency, nor have I ever suffered from the dreaded butt burn either.

@Former Member posted:

No special diet, eat absolutely everything and anything; 
Just after creation of my j pouch and before takedown, I was advised to eat often throughout the day rather than 3 meals per day, which I followed initially but I just eat when I’m hungry, normally 2 meals per day plus snacks.

I don’t think I actually eat that much but since takedown (6 years ago), I’ve put on around 25lbs and although I still workout, I don’t go as often as I use to.

I’ve often wondered whether the amount a J poucher eats makes any difference to their daily BMs. 

Just after takedown, whilst still in Hospital, my BM were probably 6 to 7 initially but by time I was discharged, my BM were much the same as to what they are now; maybe during first couple of weeks, I did experienced a couple of night time BMs but this didn’t last.

I think initially, I use to take 2 loperamide 3 x per day but somewhere along, I started taking 1 loperamide 4 x per day, although  I tend to forget but I always manage to take one in the morning and one just before bed and the other 2, whenever  I remember; also, if my output is more loose than what I would consider normal, then I’ll take an extra 2 loperamide together.
My Surgeon advised, I should never take more than 6 loperamide per day, which I adhere to.

I don’t take any fibre either.

I don’t have 3 to 4 BM, every day, some days it could be 2 all day, then the next day 4 spaced out through out the day or maybe 1 in the morning, nothing all day then 4 during the evening.

It’s never less than 2 BM per day and very very rarely more than 5, although it happens; no night time BMs, never any urgency, nor have I ever suffered from the dreaded butt burn either.

You said, "I’ve often wondered whether the amount a J poucher eats makes any difference to their daily BMs"

To answer your question, not for me specifically. I am on a low carbohyrdate diet and still go the same. I am 5"10" in height and weigh 130 pounds. So defintiely not overeating all of the time lol. If I eat more for a cheat day, poop schedule is still the same. 

You not waking up overnight must be heaven for you. I do not know what that is like anymore XD

@Former Member posted:

 

You not waking up overnight must be heaven for you. I do not know what that is like anymore XD

Yeah, I know what it’s like not to get a good nights sleep; close to 10 years with the ileostomy, I was having to change my colostomy bag, sometimes twice during the night, otherwise it would inflate like an airbag and burst open if I happen to lay on it.

Since takedown, during, maybe the first 12 months I had a few night time BM; it’s certainly not an issue now though

My BMs vary from day to day, normally hours and hours between BMs, although my frequency tends to increase during the evening.

Hello everyone.... I am a new j poucher and am having similar situation. I am only 2 months post take down. I am so glad I found this site. My family is supporting me the best they can but none of them understand the feelings I am feeling all day and all night. I think I have read every post dealing with butt burn and that has really helped me. My average is 16+ BM per day. I am hoping that time will help. Imodium, fiber, lots of food, little food....any and all combos still equals 16+ a day for me. Big DH...I’m right here with you.....

J-Pocher "Strange"...thanks for the detailed info on diet and Loperamide. I do think there is a link between what you eat, and when, that relates to BM frequency and count. The small intestine is a constant flow organ always pushing through whatever enters it from the stomach...it does not take breaks though some foods/liquids may pass through at different rates. The Loperamide must be working well for you on bowel frequency and number. When you do have a BM does it take a long time...15+ minutes or a more "normal" time? One of things I have read and found myself is that BMs tend to be slow (especially if on a fiber supplement or Loperamide) and that often I think I'm done only to return within 30 minutes to an hour to (possibly) continue what I previously started! I generally end the BM when I think I'm finished or my legs fall asleep :-) I'm pretty sure this is increasing my daily BM counts though several could be consolidated if they were faster. I never emptied my ileostomy bag 10+ times a day...maybe 5-6 and one overnight so I'm hopeful of a similar outcome now  i have taken Loperamide but stopped as part of a fresh start to see what works. Citrucel is working well, only one tablespoon mixed with water before each meal. No liquid BMs but the slowness.and extended bathroom stays I want to see improve, if possible. I may begin by reducing the fiber to a teaspoon to see if things continue to be consolidated (not loose) but pass through faster.

Ryan138...I have been dealing with butt burn for 3 months... extremely uncomfortable! The Citrucel fiber IS helping by absorbing bile acids that normally never reach the rectum/anus when there is a colon. I also use a Coloplast barrier paste that helps also. I started originally with Calmoseptine but found that if the irritation was to the point of light bleeding the Calmoseptine was causing additional irritation...the Coloplast does not do that. Unfortunately this stuff is not cheap...about $15 each! FYI... personally I have felt pretty much on my own since my take-down surgery. A follow-up appointment with the surgeon 10 days after the surgery ended with "see you in 6 months!". These forums and other on-line resources have been my PRIMARY means of learning about my J-Pouch and how to live with it. Truthfully, right now, if the frequency and irritation doesn't improve I would seek a reversal and be fine with an ileostomy!

Big DH..  I am not sure if it is too early for us but I tried the citrucel and found it too difficult to empty my pouch.  Also I seemed to burn on the way out. I am hoping that more time helps our situation. I read on a post here to drink lemon water 2 times a day for butt burn. I have been doing this for the past month and the results have been fantastic. I have had butt burn maybe 2 times since and the intensity was cut way down....and as a added bonus to the lemon water I have been able to expand my diet beyond the “BRAT” diet including salads ( I had 1 last night with a rib eye steak) As for frequency I hope it is just time for me as I had a very hard 3 months with the temp ileostomy.

@Big DH posted:

When you do have a BM does it take a long time...15+ minutes or a more "normal" time? One of things I have read and found myself is that BMs tend to be slow (especially if on a fiber supplement or Loperamide) and that often I think I'm done only to return within 30 minutes to an hour to (possibly) continue what I previously started! I generally end the BM when I think I'm finished or my legs fall asleep :-) I'm pretty sure this is increasing my daily BM counts though several could be consolidated if they were faster.

When I had the ileostomy, my output, even without loperamide or any other thickening substance, was thick; I was emptying the bag 3 to 4 times per day, every 2 hours, even during the night;
The loperamide was prescribed to slow down my output rather than thicken it; where as now, with the j pouch, it’s prescribed to thicken my output.

With my J pouch and during a BM I don’t take a long time, I’ve never actually timed myself but it’s just like using the toilet before the ileostomy and prior to my UC diagnosis.

There are occasions when I’ve finished and within  minutes I have to go again but when this has occured, luckily, I've always been at home or in familiar surroundings, not when I've been out.

I’m never on the toilet until my legs fall asleep; if you can, you want to try and avoid this, as sitting for long periods with BM residue between the cheeks can lead to Butt Burn; maybe at least apply a barrier cream, such as the ilex to prevent the acidic residue touching your skin.

I’ve never had the need to thicken my output, I did consider it, as it was suggested a remedy to either reduce or prevent butt burn but I’ve never actually suffered from the diaper rash type butt burn.

@Ryan138 posted:

Hello everyone.... I am a new j poucher and am having similar situation. I am only 2 months post take down. I am so glad I found this site. My family is supporting me the best they can but none of them understand the feelings I am feeling all day and all night. I think I have read every post dealing with butt burn and that has really helped me. My average is 16+ BM per day. I am hoping that time will help. Imodium, fiber, lots of food, little food....any and all combos still equals 16+ a day for me. Big DH...I’m right here with you.....

Welcome Ryan

9% of J-pouchers go 13X or over everyday. Welcome to the 9% group lol. I am almost 6 years in and I got anywhere between 13X-20X a day. Your situation could change over time but then again it may not. If it does not, the best advice I can give is to accept things you cannot change and not let it get you depressed. Going multiple times a day is way better than painful constipation or suffering major bowel diseases/bleeding.

@Former Member posted:

Yeah, I know what it’s like not to get a good nights sleep; close to 10 years with the ileostomy, I was having to change my colostomy bag, sometimes twice during the night, otherwise it would inflate like an airbag and burst open if I happen to lay on it.

Since takedown, during, maybe the first 12 months I had a few night time BM; it’s certainly not an issue now though

My BMs vary from day to day, normally hours and hours between BMs, although my frequency tends to increase during the evening.

Yeah, i cannot believe your ileostomy was filling up every couple of hours, I heard that before from someone else. Loperamide did not even help during the 10 years???

@Former Member posted:

Yeah, i cannot believe your ileostomy was filling up every couple of hours, I heard that before from someone else. Loperamide did not even help during the 10 years???

Yeah, the loperamide worked, it slowed down my output.
At the time, my output with or without the Loperamide was very thick.

@Former Member posted:

Yeah, the loperamide worked, it slowed down my output.
At the time, my output with or without the Loperamide was very thick.

Wow cool! Did you have to set Alarms to wake up in time to empty the bag???

The pouch wakes me up overnight, so I just let that be my alarm clock lol. 

@Former Member posted:

Wow cool! Did you have to set Alarms to wake up in time to empty the bag???

No, I could feel it or either, for nearly 10 years, I was never actually in a deep sleep..... I had quite a few accidents during my sleep; luckily, I was sleeping by myself when such incidents  occurred; it certainly wasn’t very pleasant but I was glad my girlfriend didn’t have witness or endure it.

@Former Member posted:

No, I could feel it or either, for nearly 10 years, I was never actually in a deep sleep..... I had quite a few accidents during my sleep; luckily, I was sleeping by myself when such incidents  occurred; it certainly wasn’t very pleasant but I was glad my girlfriend didn’t have witness or endure it.

Wow, that is really cool! But then again you must have been verrrry tired over the 10 years too. When I had my ostomy, I could never feel it in my sleep, that caused the bag to leak every morning. That was definitely very hard to deal with at the time, especially since I was not use to getting up overnight. 

Those days are over with for me now though. I do not usually have any accidents anymore. My pouchy is my alarm system now, its amazing how it wakes me up, its works better than any alarm clock lol. I am always tired but at least I am more happier. Taking naps definitely helps when I can take one. 

Just an update...I learned today that my pouchoscopy last week showed narrowing of the "anastomosis"...where the small intestine is attached to what's left of the rectum. This partially explains the many, many BMs...taking multiple bathroom trips to complete a BM. They performed an office visit "dilation" of the anastomosis to relieve this narrowing. An additional dilation is scheduled in about a month to ensure the anastomosis is not continuing to narrow. The narrowing makes it more difficult to complete a BM...did not expect this but thankful doctors know what to do.

@Big DH posted:

Just an update...I learned today that my pouchoscopy last week showed narrowing of the "anastomosis"...where the small intestine is attached to what's left of the rectum. This partially explains the many, many BMs...taking multiple bathroom trips to complete a BM. They performed an office visit "dilation" of the anastomosis to relieve this narrowing. An additional dilation is scheduled in about a month to ensure the anastomosis is not continuing to narrow. The narrowing makes it more difficult to complete a BM...did not expect this but thankful doctors know what to do.

I’m glad they found the explanation, DH. Sometimes repeated dilations may be required before the narrowing stays open, and some folks are obliged to do gentle home dilations to maintain the opening, but any of the usual paths (including two and done, of course) should set things right.