Finally had the "takedown" of the stoma on Feb 2. This led to obstruction, paralytic ileus and a week of TPN. This was all finally resolved when discharged from hospital on the 19th. I appear to be passing faeces now, recognisably so, but the following issues are intolerable.
1) Lower abdominal cramps as things move from left side of abdomen to right then to pouch.
2) The constant awareness of fluid in pouch and having to hold it in, fearing a good laugh will let it all out.
3) Incontinence at night, necesitating wearing a nappy like towel as faeces effortlessly leak out during sleep.
4) Burning sore anus.
These are the main issues at the moment, and if they don't improve I am going back for a terminal ileostomy.
Many thanks.
Keith

All of this sounds fairly normal. The ileus is not uncommon after take down. I had a post-op obstruction which kept me in the hospital for about an extra week with a NG tube.
Give yourself some time before throwing in the towel. The issues you are experiencing should get better. You just had major bowel surgery and your pouch needs time to adapt to its new function.
If you don't have any ointment for your bum, you should get some and it will help! Hang in there.

Adaption to the new plumbing was far more difficult for me than the removal of the colon and rectum! Like Shelby says, this is going to take time for your new jpouch to learn to behave like a colon/rectum.

Are you taking any bowel slowers like imodium or lomotil? Have you tried taking fiber to bulk up your stool? Are you doing kegels to strengthen your sphincters which will reduce nighttime incontinence? Are you keeping a food diary to measure your transit time and figuring out what foods work best for now and what to add later?

Sue

Keith, they will improve. Don't get an ileostomy yet! I had everything you had.

18 years ago.



Let your body do it's thing, don't grow impatient...barring any other issues all of these will definitely resolve as your body gets used to the new arrangement. Give it a month and see how you feel before you make any decisions, please.

My sympathies,
Jenn

Keith, it definitely gets better. What you are going through is not uncommon. Like several people on this forum, I also had ileus post opt, which led to a week of TPN and an NG tube. Increased frequency and nocturnal leaking in the first few weeks after takedown is also completely normal, as your body adjusts to a routine and your pouch starts to get used to its new function. Understand as well that you have to give the pouch at least 8 weeks to settle into a normal rhythm, though for some it takes longer. Butt burn and chafing is also very common post surgery and should improve over time. In the meantime, try a zinc based barrier ointment such as Calmoseptine or Desitin, though pretty much any diaper rash cream will give you some relief. For the leaking, keep doing your Kegel exercises as many times a day as you can tolerate. And as suebear said, stool bulkers such as lomotil or immodium should help thicken you up and slow things down.

We've all been where you are! It will improve.

As someone who has leakage sonce takedown 4 months ago,can I recommend you try Ilex paste to protect your anal area? I have found it works better than any other protectanct and although it's a weird product to start with the lack of soreness will make up for that. You shouldn't need it forever! I have had peaks and troughs through this process and currently things are bad again,but even I can see an improvement on the worst early days. Give your body time to adjust. Peppermint tea helped me with the early pains. Don't give up yet-in any case no aurgeon worth his salt would agree to operate again at this early stage.

I would be careful about adding anything like imodium or lomotil (not sure if it is the same in UK) until your surgeon gives you the okay, especially with the complications of post-op ileus. So, I would stick to bulking up your stool with diet--rice, pudding, bread...whatever you can tolerate.

Agree with the others, waaay too soon to throw in the towel...or the nappy This is major, major surgery. I would say you need a proper 6 months to evaulate how it's working for you, everything needs a chance to heal and get used to the newness. The body is a living, breathing animal, it needs time to heal.

Thanks so much everybody. I feel so much better. I will give it time. But after losing 8 kg and three weeks in hospital, I am feeling weak and depressed. Last night I took some codeine and had a wonderful and peaceful night.

See if your doc will give you more codeine so you can sleep. Consider a toto bidet (or at least shower a bunch) to help the BB. None of the more common bowel slowers worked for me so I take Tincture of Opium. This surgery is hard stuff. You need to put on your patience hat and wait it out. It took me a year to know just how good things could be and that was a tough year, but it does pass, things improve, you eventually feel normal.

Hey Keith, hope you're doing better, I had my op in Australia in 1992,(ex Londoner)and my surgeon said he was taught the technique in Britain. I did loads and loads and loads and loads and yet even more Kegal exercises, before I was on the J and still on the dreaded bag. The medical staff told me this is why I didn't leak. I was like doing gazillions a day and I was watery as hell. Lomotil and Immodioum did nothing even though I had truck loads(or should I say lorry loads ). I found the best was Panadeine Forte, or 500mg paracetamol + 30g codeine phosphate, 6 to 8 day, slows it right down and good for pain.Hope this helps, Heather

Hang in there dude! It does get better, could take up to 6 months to get better. I had to wear feminine pads to bed for over a year after my takedown. I used A&D ointment for the butt burn. It takes a long time for your system to get used to not seeing the pouch as an obstruction itself. I know it is hard to be patient as you tend to expect the surgery to be a cure-all. It may take a year before you are glad you did it but keep the faith...IT WILL GET BETTER!

I truly thank you all for the advice and support that you are giving me. I must admit that things are improving slowly. Does anyone else suffer from copious amounts of wind? I can pass it like a machine-gun. I do take Co-Codamol 30/500 at night only, which shuts everything down overnight. I avoid everything else during the day. I have to be careful after the ileus. I don't want that experience again.

G'day Keith,
wind, I still get it, about 4 weeks a go it was driving me nuts, also the rest of my family, I could not stop. I went and saw my GP, he suggested activated charcoal tablets, and they worked for me, give them a go and see, all the best
Regards
Bob

Hi what is a ileus?, going to have my takedown next month and i am abit worried...