5 weeks post surgery, 15-20 times bathroom trips

Perhaps 4 weeks was a little too optimistic on the part of your surgeon.

It took months for things to settle down.  I was very depressed over my poor pouch function in the early days.  Many people have including myself share your experience.

One of the strategies I employ is taking Imodium 3 times daily, breakfast, dinner and bedtime.  This slows down digestion just long enough to give me apple sauce consistency.

Unfortunately, i am stuck on this medicine; if I stop it, liquid and burning stool will soon follow.

Hang in there, it does get better, but it does take time.  You will get more responses here. And you will figure out over time, what to eat, when to eat, and how much to eat. These are the things they don’t tell us pre surgery.

We have to learn and advocate for ourselves.

You have come to the right place!

You could try switching from Citrucel to a different fiber supplement (e.g. Metamucil). Each of us responds differently to these. Also, if the burning is external then a zinc oxide-based barrier cream applied after *every* BM should help - I did that for at least six months or longer. Finally, some people do better with Lomotil than Imodium, but either can help slow things down, especially at night.

Most of us got the advice to “stretch the pouch” by gently delaying bathroom trips a bit at a time. I found this extremely helpful in reducing bathroom trips.

My surgeon told me it would take 6-9 months to feel well, but most people feel really well after three months.  Be patient and you will get a little better every week.  It’s really rough in the beginning - don’t get discouraged.  Bowel slowing meditation can help a lot..

Oatmeal slows me way down. I make the 1-min. kind, not the long-cook kind. Apricots and apricot nectar also help. The refined powder version of Metamucil also helps. You're in a very early stage of recovery. It will get better. Maybe get a squeeze-type bottle (or even a simple bidet attachment for toilet) to clean your bum rather than having to wipe so much. The water is soothing and cleans better. Then apply zinc oxide cream as mentioned by Scott.

Thanks you all for understanding and suggestions. I have been using bidet and butt cream. But don't know what to do with the burning inside!

I have to go back to work (albeit remotely) next week and I am worried because of the incessant bathroom trips and resulting pain/burn. Did you take more than 6 weeks from work for recovery? If not, how did you manage your return? TIA.

SurvivingUC….  Time is what it takes to get to a more normal life. I did not go back to work for 4 months after take down. Everyone is different. You are asking your small intestines to act like a colon and in time it will. For me the burning was intense for the first six months and was finally gone at 20 months. I know that sounds discouraging but your experience may be better than mine.  Keep asking all the questions you have here as this group is AMAZING!!!  Things that helped me were eating pumpkin and adding lemon juice to my water.  Unfortunately it just takes time for that burning to go away but once it does your life gets back to a normal feeling. Good luck and we are here for you.

I was out of work for 5 months.

By any chance, have you spoken to your surgeon about this. They are suppose to provide immediate post surgical care for a number of weeks/months.

You can check with them as to the efficacy of lomotil (by prescription) or Imodium (otc, or capsules by prescription).  They may have some other ideas for your particular situation.

Unfortunately you have to lower your expectations. Like everyone says it’s going to take some time. I can remember not making it to the bathroom after J pouch surgery and that didn’t happen with UC. Although there were some close calls. I was thinking great this is worse than before!! I was put on both Cipro and Flagyl and have been on them since. I have chronic pouchitis and recently came off of Flagyl but still take 500mg of Cipro per day. Try a round of antibiotics it can’t hurt. Remember you’re asking your body to do something it’s not supposed to do, it’s going to take time. Oatmeal, Metamucil and small meals everyday will help.

Chin up, this to shall pass.

jpouch 2002

Also I would like to tell you to check the meds you are taking.

I was taking an extended release drug for another problem, but my pouch just went crazy for weeks because of it.

I only found out because out of desperation, I stopped all meds for 48 hours, and started adding them back one by one until I found the culprit.

Initially I was told 18 months to feel totally normal.

Alot of good replies above.   Alot.

Stick with it and give it time. 5 weeks is a blip.

I know it's not what one wants to hear.  But things will improve incrementally and slowly.    Be patient and when you get there you'll know.

Good luck.  I know it s* cks in the meantime.

Uc  s" ks period.  And so does the process after getting the pouch .   Time is your best friend.

I can't add to the  comments. They are good. And from experienced people. You have come to the right place.

Richard.

Thanks to all for kind responses: adding oatmeal, tinkering with metamucil. No other meds, really.

Not sure why I was told I could return to work in 4 weeks. I am tottering even at 5 weeks. Some days are so bad, I regret the takedown. 

Your regret is understandable. I spent many months questioning why I'd opted for the jpouch.  The early days are just miserable with burning and exhausting frequency. I thought I'd never eat normally again or sleep through the night.  That lack of sleep makes working very challenging, even if, like mine, work is remote and the bathroom is close by.  

I just passed my two year takedown anniversary -- two days ago. Now there are many days that I hardly think about this unique anatomy. I found the FODMAP diet and can eat a great variety of foods, allowing me to dispense with psyllium husk.  Best of all, unless I eat too late, I mostly sleep through the night.

Hang in there.  Next month will be better. And the month after that.  And the month after that . . .

It took me 2 years before I felt I had a "new normal". I was fortunate to be able to take a 4 month leave of absence.  Perhaps you will need more time off if your job allows.  I hope your recovery improves, but it does take a lot of time and patience.

Lot of solid advice already, 1 more: Questran helps if your burn comes from gal salts.
Psyllium fibers, barrier cream and a bidet (wc-shower) are life savers as well.