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Had my takedown 2 months ago (April 13), and been going to the bathroom constantly. Started on lomotil (2 tabs four times a day) which wasn't working, so started on Tincture of opium on Tuesday night. First 24 hours were my best 24 hours since surgery, so was very hopeful, but last 48 have reverted back and last night - Friday - was a nightmare with leakage (leakage is actually a polite word for what happened). So now worried that nothing is working. Can the opium take time to get working or does this mean it's not working? And if it's not, what then? I know 2 months out is not that long, but if meds are doing nothing to help, should I be worried that this pouch thing isn't going to work for me? This was all the result of rectal cancer, and had neoadjuvant radiation and chemo - would that raise my chances of the pouch not taking? Beginning to worry.

 

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I used Metamucil and prescription Imodium for months after my take down.  I don't have experience with the tincture of opium.  Instead of drinking a Metamucil concoction I took the supplement form.  Gel caps with metmucil on the inside.  It worked out a lot better for me as we aren't to drink as much as the directions for the product says.  This is to promote absorption of our stools.  

 

I don't know what state you live in but I've talked to several people in Facebook support groups that are in states where they used marijuana, the low thc medical grade so they don't get "high".  I would try it if I lived in one of those states and I could work with a competent doctor. You had chemotherapy and all so that is why I immediately thought about medical marijuana.  I have no personal experience with it.  Maybe someone else in this group can tell you more about it.

 

I was still having a difficult time at 12 weeks.  It could be that things will get better with time.  You might also look at your diet and increase foods that thicken up our stools more than others.

 

One good thing about you not getting a j-pouch after IBD is that you probably won't have to worry about pouchitis or cuffitis......I hope you remain cancer free. 

 

TE Marie
Early for some yes.  Improvement is slow and tedious. 
I have not tried tincture.  Lomotal helped some but I don't use anything but an antispasmodic.  I had all kinds of problems at 12 weeks.  Time is your friend.  You should notice tiny improvements.  I do mean tiny.  I still have leaks overnight.  Mostly when I lay on or wake on my back.  Just slips out.  Nothing big most times.  But I notice less leakage if I can go a few times before bed. 
Give it more time.  I trust it will get better.  It has for me and it is still getting better. 
Richard.
Mysticobra
Early for some yes.  Improvement is slow and tedious. 
I have not tried tincture.  Lomotal helped some but I don't use anything but an antispasmodic.  I had all kinds of problems at 12 weeks.  Time is your friend.  You should notice tiny improvements.  I do mean tiny.  I still have leaks overnight.  Mostly when I lay on or wake on my back.  Just slips out.  Nothing big most times.  But I notice less leakage if I can go a few times before bed. 
Give it more time.  I trust it will get better.  It has for me and it is still getting better. 
Yes you had some rough times.  Cancer and all.  But give it more time.  Too early to give up.  I didn't have cancer but was told it takes up to 18 months.  And it does.  Did for me.  And it will take me longer.  But it's working now.  Not 100 percent.  But I can still see and feel improvements weekly. 
Richard.
Mysticobra

Opium should not take time to work but you may be on too low a dose, so depending on how much you are taking you may need more but talk to your doctor about that.

 

Studies do show that radiation treatment for rectal cancer can be problematic for a J pouch, not so chemo ( if given separately).

 

It is pretty early yet and things may well turn around, good luck

 

C

I mostly agree with what's been said.

 

I had my operation on 10 April for ulcerative colitis and despite doing pretty poorly I feel like this needs more time to judge before I reach any decisions as major as removing my jpouch.

 

Look around for advice on the early days and see if anything helps you. If your still suffering, try to get an appointment to check for strictures or pelvic floor dysfunction. If that doesn't work, you can keep giving time for pouch improvement until you feel like enough is enough. I'm in the same situation, there's not much else we can do I'm afraid. I know how disappointing it is, but remember that this too will pass.

SolomonSeal

Thanks so much for the responses/advice. Hadn't considered pouchitis (hadn't even heard of it), but it's a possibility as I had UC for 25 years before the cancer diagnosis. Certainly not considering anything drastic at this stage, but just wanted to know if what I'm going through is particularly unusual. Seems from the responses that it's not, which I guess is good to know. But it's pretty bloody miserable at the moment. And didn't even get any beneficial side effects from the tincture!

D

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