Four months ago I had the takedown procedure. Excited that my life would drastically change, I tried not to be dismayed at the high frequency and diareaha; people assured me it took time and the pouch had to expand. I remained patient and dreamed of being like the majority of surgical patients, going 2-6 times per day.
But now here it is four months later and very little has changed. I'm going 10-15 times during the day, and the night is the worst four to six tims I am woken up. Although able to go back to sleep I never get a restful night.

I have followed all the doctor's suggestions nad people on this site; small frequent meals, lots of immodium, fiber bland diet.
The metamucil actually makes it worse. While the stools are better formed with more consistency, the urge to go is much stronger and frequency goes up. I'm also taking codeine and that helps a little.
I know there is always the possibility of going back to the pouch. I don't want to do that; the changing, the fear of leaks, the vanity issues, but it was simpler without pain, or dirty drawers and horrible butt burn.
Even though i'm unhappy with surgery it is still better than raging colitis. I do have some control, except at night I used to only go once or twice. But it sure is not much different.
Welcome love, support suggestions
I know it's supposed to get better but I don't see any progress.Even my very optimistic Surgeon Dr. Sack at U.C.L.A. seems frustrated and apologetic.
he thinks there could still be the chance of Chrons. I had colitis 35 years and was never diagnosed with Chrons but I've heard stories it can go misdiagnosed.
Sorry for the long ramble but you guys always offer great support and suggestions.

At 4 months, I say it is too soon to classify your surgery as failed. I do not tolerate psyllium fiber either, so I would completely avoid any product that has it if I were you. You might try Citrucel for a fiber supplement (has methylcellulose rather than psyllium). However, like you, I just found that fiber supplements only increased my frequency. I could thicken by just dietary adjustments.

I did not sleep through the night for 4 years post op. This was due to untreated cuffitis. I only had occasional scant bleeding, but there was enough inflammation to increase my frequency. It was only after it was treated that I slept through the night. Is it possible you have some bacterial overgrowth? A short course of Flagyl may put things right for you.

By the way, I am 13 years out from surgery and most days I have 10 or more BMs. However, I do not consider my surgery as failed. This is because I have good control and sleep through the night most nights.

I think that the average is more like 4-8 BMs per day, not 2-6, so you may be expecting too much.
Jan

I agree with Jan. Don't give up hope yet. I was told the average BMs was 6-10, so I think if you can adjust your mind to that, things may seem better. THe night issues I totally understand. During my j-pouch years I was up 2-4 times every night and never dropped below 12 BMs a day (even on 1000mg of Cipro daily for pouchitis).

I eventually went back to an ostomy (which I am thrilled with), but in the meantime I tried lots of other things, some of them holistic...grapefruit seed extract, apple pectin, flax seed, etc...

Curious as to what form of Metamucil you are taking? It made a difference for me; the stuff you mix in water didn't help and gave me the results you describe. However, the wafers worked well for me. You can also talk to your dr about trying Lomotil instead of Immodium, it works better for some people.

I agree with jan, it's way too soon to call it a failure. It took over a year for things to get to some kind of routine for me, and then I struggled for an additional 2 years with recurrent pouchitis. It really took about 3 years post-op, if not 4 until things really settled down and were manageable and I'm very happy with how it turned out.

As to # of times a day, I have NO IDEA. I go every time I go pee, that's the easiest thing to do and I pee quite a bit because I drink a lot of water. But I have complete control of when I go and am pain free.

I have never slept through the night. On nights when I've eaten an early, easy to digest dinner I still get up once. On chili and beer nights or popcorn or later, larger dinner nights, I am up at least twice.

I too never tolerated fiber supplements, it just made me go more. I found control could be achieved much more through diet.

Give it some time! Hang in there!

Thanks for kind words. Jan I'm curious going back to the pouch. I know many do. I have sure thought of it. Clean underwear no butt burn. But I still had to empty pouch once an hour sometimes more. And I was always worried about leakage which happened more than once. I like having a whole body.
As for fiber, I've tried metamucil and wafers both have same effect. maybe I'll try citrocel.
Again, this message board always gives me comfort and support in a way Doctors cant

Eric,

You probably had a loop ileo. If you were to get an ostomy for a longer period of time you would get an end ileo and the performance is MUCH different. With my loop ileo I emptied once an hour, had pure liquid output and was in the ER 6 times in 7 weeks due to dehydration.

With my end ileo I empty only when I go to the bathroom to urinate, sleep through the night and have consistancy more like paste which helps on the leakage front. I haven't had a leak in 7 years with my end ileo. Not saying you should do it, just keep an open mind no matter what you choose. Even the end ileo path requires an adjustment period - it took about 2 months for my skin to adjust, my output to thicken and to get used to the whole thing.

I don't think of myself as not having a whole body, I think of myself as having a HEALTHY body.

Eric,

Like the others here, I would encourage you to stick it out a bit longer. Like you, I had a horrible transition experience and it took 3-4 months to see much in the way of positive change. You sound very similar to me, except that I did start to sleep better after about 2 months instead of being up 4-6 times at night.

The ONLY supplement / thing that helped me while I was going through all of that was yogurt and probiotics. I know it is expensive, but I would suggest given VSL#3 a try if I were you - at least for a month. If you see improvement, at least you will know that things can get better with probiotic treatment - even if you don't want to stick with such an expensive solution.

Also, fiber and immodium did NOTHING for me early on while my body was still healing. And I experience nighttime accidents several times a night for the first 3-4 months. But they eventually stopped (mostly - still once every month or two).

Hang in there. If you go six months, try the VSL for a month (stick it out too), and see no improvement, then maybe you should consider alternatives.

The only other thing to try for relief is opium or narcs in moderation. Might be worth a try before losing the pouch too - unless you are unable to take them for whatever reason.

Steve

For the butt burn I use ilex paste. I did try Calmoseptine and it was OK but this ilex did the trick 24/7 for me. If you haven't tried it order some if you can. Also, I use Culturelle probiotic daily and have since take down Feb 08.

I am sorry you aren't feeling well. I agree with giving it more time before going back to the ileostomy, although it is good to always have the option.
Everyone's bodies are different. You were sick for so many years, maybe your body just needs more time.
I have so so experiences with fiber supplements but I have had amazing results when I focus more on my diet- especially incorporating oatmeal & waiting to drink until a half hour after eating.
I wish you lots of luck for health and happiness.

Eric, I have not posted here into a long time. I was like you not very happy with the progress of how things were going. But I am 4 years post op and am quite happy now. I currently go about twice in the morning and three times aday and about twice at night. It took about two years for me to get to about 6-8 times during the day. Please hang in there. It will get better.

I would not deem your surgery a failure at this point. You are only 4 months out. You seem fairly "normal" to me. It took nearly 2 years for my jpouch to "mature". I am almost 5 years out now, and continued to see some improvement each year it seemed until recently. Nothing major now, just increased watery stools. I will have a scope done in 2 weeks and I am sure something will be figured out.
My average stools per day range from 5-12 depending on what I eat. I always have to get up once or sometimes twice a night also depending on what I eat. I have come to terms that I will not get to sleep the whole night through. I think you just get used to it and just go and then go back to sleep.
Give your jpouch a chance. Your poor bowels have been through a rough time and your small intestine and jpouch just needs some time to figure out their new roles.

Hang in there!
Becky

Eric,
I totally know how you feel. It has been 6 months for me and I think the same thing too sometimes but really we haven't given any time. The hardest thing for me is to be patient especailly when I have been through so much I just want quick fixes. I higly recommed
'Super Seed' Beyond Fiber from Garden of Life. It doesn't have Psyllium in it which causes me gas and also the FIber is from Flax. You may wanna try it. It sure has helped with the butt burn and acid feeling when I have a BM.
PLease hang in there and as hard as it is try to stay postive. That is what my doctors have told me this week is that just because you have the surgery doesn't mean you are 100% fixed. I have to continue with my therapist and continue healing on the inside.
We are all here for you, hang in there it will get better.

quote:

I remained patient and dreamed of being like the majority of surgical patients, going 2-6 times per day.

Well, if you are under the (erroneous)impression that the majority of surgical patients only go 2-6 times a day, no wonder you deem your surgery a failure!

In all my research before and after my surgeries,I have never come across a number as low as 2 as a probable outcome. The extreme BEST case is supposed to be 4 times a day on a routine basis. And while it is possible that you msy become one of the fortunate few who settles on 4/day, you realistically should be trying to get down to 6/day or even 8. Two or three just ain't gonna happen.

I know that you've been anxious ever since your takedown. I thought that you had agreed that you'd give it a year before worrying that it might not work out for you. I know that it's rough, but you have to try to be patient.

You mentioned that you have been taking codeine. Are you taking it TID? I started out that way, but eventually changed to taking all three doses at night right before going to bed. That has worked much better for me.

Best of luck.

Scott

Eric,

It has been 2 1/2 years for me now, and I go anywhere from 6 to 12 times a day, I have gotten to a point where I rarely get up in the middle of the night, maybe once a week, but I have read and reread other peoples postings about how often you go, and now most importantly that dreaded butt burn. I was so wore out prior to surgery with all the meds and such that now days I dont even pay attention to what I eat. Yes there are some consequences for certain foods, (I love spicy food) but I decided to no longer let any of this affect me. I dont know if I am just used to it and it no longer bothers me, but I take no supplements, fiber, waffers, ect. If I see I eat it, and let it come back out the way it wants to. When I do eat the spicy stuff and it starts to burn, I make sure I take a shower before bed and sometimes I just use plain 'ol Vaseline to help sooth the burn. Other than that I have no regrets, and would rather any day of the week deal with going often and the butt burn than deal with a bag or even that dreaded UC.

Hang in there, expect to have to go 8 times a day, know that you will never completely get rid of the butt burn, and then you dont have to worry about being disappointed. I Thank God everyday that I no longer have UC, have to take all those Meds, or worry about a leaking bag. and I look forward to my bathroom breaks because I get 5 minutes of peace, because I have 4 kids.

Think positive, and everything will be O.K.

Christopher

Thomas, is 17, had his take-down seven years ago, and follows no dietary guidelines whatsoever. He doesn't count and doesn't want to talk about it, but estimates he goes 9-11 times/day. I think he usually gets up at least once during the night. For him, this is now normal.