I hate this!

Hey,

I know this must be very hard. I stopped going over 12 times a day once I started an Imodium routine.

quick word of advice: maybe right down all the questions you have from the last 48 hours and put them all in one thread, instead of starting like 7 new ones.

As for your frequency.. if Imodium stops having effects for me, I would suspect pouchitis. Have you talked to your GI? 2 months out while on lomotil/imodium, you should not be going 15 times.

I would call your GI and ask for advice, and let them know you are already taking measures to slow things down which work for most people but are not working for you.

Your GI might suspect pouchitis, and can call in a script for you over the phone for Cipro.

be patient... it will calm down. I just posted this somewhere else but I will say it again (im sure others will disagree with me)
If the creams and diet and supplements and early eating are not helping STOP DOING IT! Reset and see how your body does without all that stuff. (if it doesn't get worse, what have you lost by trying?) I found that keeping clean (by wipes or a bidet) and dry (not using creams) helped me finally heal my raw tushy. My frequency went down over time and Im happy I dont have to take pills to go less often. I believe (most) bodies will adjust naturally to the pouch. Oh, and don't forget this piece of advice given by the beautiful people on this site: Measure progress in months, not weeks or days. Healing takes time! Stressing over this cannot be helping you.

thank you for responding.

my questions are not often related to each other and apparently my brain isn't smart enough to collect and organize my thoughts.


I'll stop posting much on here.



once again, thank you for the advice.

please post as much as you need to... that is what we are here for

Yes, please don't be afraid to ask questions. I stick around on this forum to help people where I can so no worries!

Yes you need to have alot of patience after having this surgery. I am almost 4 months post takedown and I go at least 10 times a day. I have been told it can take up to a year to heal so I am setting my sights on that date and it helps to not be so disappointed and frustrated. And Yes, definately post questions, this site has been a wealth of info for me before and after this surgery .We are all here to help each other out. Things will get better .

dont stop posting! i wasn't saying that in a bad way that you need to limit your questions.

what i meant was i think you'd get more answers (and a larger census is always better) having like numbered questions in one thread because i've seen those responded to well on here.

thats what this site is for.. questions, answers, advice, relief... a group that understands each other.

be patient, be proactive. maybe think about asking your doctor whats going on.. but hang in there. it WILL get better.

I know it's easy for all of us to sit here and tell you to hang in there. But seriously, hang in there. 2 months is nothing! It's so early on for you, and changes will happen, they will I promise. Everyone here can agree with that. All of us are different inside there too, the way our bodies have reacted and learned to handle our pouch.

It sucks and it's hard, believe me I know, we all know. Nothing is easy and there's no simple answer or magic pill, I so wish there were.

Maybe start to change things, experiment with different routines of meds, fibers, etc. Give each one a good week trial before switching.

I do Metamucil wafters, 1 pepto, 2 imodiums, and 2 beano 2x's a day. This seems to work for me. I also throw in a probiotic and a digestive enzyme twice during the day. I wanted to tell you my routine so you can see an idea of how someone else does it. Everyone on here does it different, heck some people take nothing ever and I'm jealous!

Good luck love, it'll get easier and you will find what works for you. Doctor's don't always KNOW unless they have a pouch too and I'll stand by this. They have ideas and things other patient's have tried and had success with, but they don't know exactly what works for everyone. They all have a starting point to start and and they work on from there going up and down the ladder. I see the docs I work for do it all the time for other things. So talk the doc, see what he says, get a handful of ideas and things to try. Mix and match!

It's OK FQ, after all these years, my pouch still upsets me too. It's a very bumpy ride with it. I'm just praying things don't get any worse now. It's a miserable ride but I might be able to make it the rest of my life like this. I sure hope I can find better though, before the ride is over.

Dog Day, i see you always post negatively.. especially when others need a positive outlook. Yet you have never once mentioned what your daily frequency is, just that its "higher than you'd like".

so, what is your daily frequency?

and after you answer that: do you take imodium? have you talked to a doctor about how unhappy you are and seen if they know of anything that can improve pouch output?

I understand how uncomfortable you are. Having surgery is very distressing and disturbs both mind and body. I am not discounting the horrible time you are having with the physical symptoms in any way but perhaps consider that the mental insult of surgery is also affecting how you are feeling?
I am seven months out from takedown and have not been uncomfortable at all. Like you I have had pain frequency and intense burning. There has however been slow improvement. I should also add that I had an undiagnosed stricture and last week pouchitis was noted. Having been dilated and put on cipro I do feel better. In retrospect I have possible had the symptoms for some time but I do not feel annoyed because i also think it was hard for the medics to seperate recovery and the devlopment of the problems.
Hold on and keeping asking for our support

Soory made a mistake in my post- I have not been comfortable since takedown!

fq and Dog Day, my heart goes out to both of you and I understand your frustrations and pain. We all do and we're here for you!!

Positive or negative at least we all have a place to come and vent and scream where other people will understand our battle because they've been there. We're all here to help and not cast judgement or pick. This is a very loving site from what I've experienced.

When everything going on is on the negative end, and you're having a hard time with regrets, frustration, depression, and fatigue it's hard to keep a positive tone, and I know we can ALL understand this because we've at least been there in our lives at one time, whether it's with our surgery or other aspects of life.

Please don't ever feel bad for coming on here and not being able to keep a positive tone, or posting too much. This site was created to get it all out and get help and adivice. In a strange way we're all in this together, and we're a very special group of people who understand each other like no one else can.

Hang in there you two, hopefully change will come soon for you to lift your spirits <3 In 12 years I've never really been happy with my pouch, to be completely honest and I've regrette it more than I've ever been happy with it. But that doesn't mean its not possible for me or both of you one day! I wish I could hug you all.

fq.. has your surgeon or GI done a scope yet? If so, do they really know a lot about jpouches? You seriously could have problems which may not be solvable by just "being patient and waiting it will get better." I have been there. My pouch did not work correctly from the beginning, yet my surgeon at the time and others were saying oh.. its all right, it will get better. It did not. Because it could not. After 6 months of torture I got to Cleveland Clinic and they quickly figured out my pouch had functional problems and could therefore never empty all the way. Permanant pouchitis that no amount of antibioitics or any other medication could help. So my point to all of this is... if you are in this much distress. do not wait. Do not be patient. Go to your doctors, demand a scope, demand someone in the medical profession to help you.
good luck

Sorry you are having so much trouble. I personally did not like lomotil for the same reasons you described--I felt drowsy and "out of it," so not something I was interested in continuing. Sorry if this has already been mentioned as I haven't been following all your posts, but have you tried taking the max dose of imodium? This would work out to be 1-2 tabs every 2-4 hours, up to 8 a day. You can continue this regime indefinitely. Perhaps start with that and see if there is any change.

thank you everyone for responding to this post. i was taking a break from the site because i thought i was thinking too much about the pouch and maybe posting too much.

it's been another week or so, and no major improvements unfortunately. i still have feelings of urgency and when I empty my pouch, I look in the toilet and think "WAS THAT ALL???" why did the pouch feel so full like it was going to explode but only a few tablespoons came out?

also, lots of anal pain and throbbing anus after a BM. having hemorrhoid problems too now.

i always feel like i am doing something WRONG. Emptying the pouch wrong, straining too much, spending too much or not enough time on the toilet. really don't understand this and i guess it requires SO much more patience than i thought. very much a struggle still.

i cut back on the lomotil and trying immodium now. going for a checkup next week.

i guess I'm still adjusting. hope to be successful one day.

thanks again.

j-pouch : 2 months old

Hi fq,

Sorry you are still feeling poorly. I mentioned to you once before about the possibility of a stricture. Because what you are describing sounds like that may be it. I had one after takedown. It's an easy fix. Have you had any follow up visits to your surgeon?

thank you. i did get a dilation done 1 month back, so maybe i need another dilation? but before the first dilation, the symptoms were even worse - going to the bathroom for 30 times a day and long stringy stools! and i had to go to the bathroom every 15-20 minutes!

now I go to the bathroom 10 times a day, and usually a couple tablespoons come out. I have an urge every 2-3 hours.

does that still sound like a stricture? maybe it is not as bad a stricture?

i heard that strictures are common in crohn's?

i think i may have a fistula too, i get gas and sometimes discharge from the vaginal area (sorry if TMI), but never stool. does that sound like a fistula, or does fistula mean stool coming through? my doctor does not seem to think i have a fistula, but i sometimes feel something going on there.

my doctor is a good surgeon, but follow up care isn't great. Is it OK to get a second opinion from someone else, even though i'm only 2 months out of surgery?

hence, again i repeat my subject line!

this many complications and I'm only 2 months out!!

does that mean my pouch is DOOMED?

j-pouch : 2 months

A stricture just means that there may be scar tissue building up at the connection to the pouch and anus. Nothing to do with Crohns. It is possible you may need another dilation. I needed to go 6 times to have it done before it finally stayed open.

10x a day really isn't all that bad 2 months out. I know it seems horrible to you but you are making progress and that's the most important thing. Sorry I don't much about fistulas.

thanks... i think 10x a day is definitely improvement for me, but there is pain when passing a BM. there is pain inside the rectum, and also a lot of throbbing on the anus because of swollen hemorrhoid tissue and spasms too.

so even if I just went 5x/day it would feel like a lot more because of the pain that accompanies it.

how did you manage to stay positive while undergoing 6 dilations over 1 year? Did you ever feel during that time that maybe the j-pouch is a lot of hassle and pain? I admire your strength, I had just one dilation so far and was feeling down for a week afterwards.

I didn't think the dilations were a big deal. I just went to my surgeons office and he did it right there with his finger. Was it more involved than that for you....did you have to be sedated? I always felt so much better afterwards and my surgeon assured me that it would be resolved and it did.

it was also finger dilation done right in the office, but it hurt and reminded me of colitis days with all the poking and probing and showing my rear to the docs. i guess i got too comfortable with the ostomy. then i started to worry (probably not necessary) about possible crohn's and maybe the j-pouch isn't going to work because of the stricture. and i just went through a major operation for something to maybe not even work properly.

maybe i am comparing myself too much to other people who seem to be doing a lot better than I am right now. The dilation hurt a lot to be honest, I almost passed out afterward. I was bleeding for a week afterwards and passing stool was even more painful than it already is for me after the dilation. But then again I am also still weak from the surgery. I think you have more mental strength than I do. I would rather have been sedated, but I think the doc is slightly sadistic, LOL

Yes it did hurt me too! Especially the first one but then the following ones were not nearly as bad. I have a very high pain tolerance and I do have a tough disposition.

You will make it through all this. You are definately on your way. I'm surprised your surgeon didn't set up a follow up visit for you after that dilation. You may need another one.

As noted in other threads, "Dog Day" is the ever-present black hole AKA Fred Bird.

Simplex...Dog Day is a notorious troll (using many different names) on ALL j-pouch sites. In fact, he has been banned from just about all of them, but finds a way around it. He's had his pouch for over 20 years and the only problem was dehydration ONCE. Eventually, someone will trigger him innocently, he will go off and will get banned. It's just a matter of time. Just ignore his repetitive nonsense. It's like a broken record.

fq...you are brand new to this whole jpouch thing. I know 2 months feels like an eternity, but honestly -- the healing process and adjustment to your new norm takes months (more for some, less for others). I remember getting very frustrated -- but, in the end -- for me, it has all been worth it. Good luck and keep coming here for advice.