Still need nappies/diapers at night four months post surgery?

Hello everyone,

This is a concerned boyfriend writing on behalf of my girlfriend. She battled with bad ulcerative colitis for about two years during which time she required three operations - one to remove the small intestine and get the stoma/bag, one to remove the rectum and then the final reversal to get everything back to normal.

She is feeling really good all the time but is still having major issues at night with regard to bowel movements in her sleep and still has to wear diapers/nappies when she goes to bed. This was to be expected initially but it has gone on far longer than was anticipated. She saw the surgeon yesterday who is referring her to someone to work on some exercises with but says if that doesn't work he might have to go back in and try and see if there's anything wrong again.

Obviously I'm very concerned for her and would really appreciate hearing from anyone that has had similar experiences post-op, and what solutions if any they found to the issue, be they conventional or unconventional. Any input at all would be greatly appreciated.

Thanks everyone!

I'm at 10 months from my takedown surgery and I still get leaks during the night. There seems to be no rhyme or reason as to why they happen. Some nights they do, some nights they don't. Some nights it may be one accident, others it may be a few. I do know I've dealt with pouchitis and have been on antibiotcs for it. While on the antibiotics the accidents for me were much much less.

If this is only occurring at night there is a reliable fix; kegels. Her sphincter has lost muscle tone, and when we sleep our muscles relax, hence the leakage. She should start doing kegels 3X per day in sets of 5. Hold for 20 seconds, release for 40 seconds. She can also seek assistance with a rectal Physical Therapist......they work wonders.

Sue

A lot of people with j-pouches take Imodium on a daily basis. My surgeon said some people do, and some people don't. I haven't taken it since my take-down. i took it often when I had my loop. I, personally, would take Imodium before worrying about accidents if it came to that - but I would try setting an alarm and see if getting up helps.

I also agree with suebear, kegels were recommended to me by my surgeon when I was getting ready for my take-down. I never had any issues with holding it, so I did them for a little while, and then stopped.

Looking in the pouch is not a procedure really. it takes about 10 seconds. I had my pouch looked at a few times since surgery - as a general follow-up. I know I had it the day before reconnection, then again pretty shortly after the take-down, and again at 3 months. I would think they would have looked at her's by now. it takes about 10 seconds and there is no prep required. They would be able to see if there was any type of inflammation causing her to be unable to hold it, but since it's only in her sleep, i think it's to do with sleeping deeply and not receiving the signal. If it was the muscles, you would think she would have it during the day too - but i guess during the day we are more aware and the muscles aren't as relaxed.

This thread is a perfect illustration for why surgery is not the "big fix" the doctors tell us it is. I understand many people with UC MUST have surgery, I get that. But as in my case when the docs start pushing surgery right after being diagnosed, something is obviously wrong. I had a surgeon tell me in the hospital "you'll be eating hot chicken wings again weeks after surgery". I don't eat chicken wings...
That being said, I hope those who have surgery go on to have productive, wonderful lives, but it seems to me the surgeons have a long, long way to go.

beatUC said...
This thread is a perfect illustration for why surgery is not the "big fix" the doctors tell us it is. I understand many people with UC MUST have surgery, I get that. But as in my case when the docs start pushing surgery right after being diagnosed, something is obviously wrong. I had a surgeon tell me in the hospital "you'll be eating hot chicken wings again weeks after surgery". I don't eat chicken wings...
That being said, I hope those who have surgery go on to have productive, wonderful lives, but it seems to me the surgeons have a long, long way to go.

No it's not all roses, but I can hold it for an hour or more if I need to. Never would I have been able to do that with UC.

The odds say 75 percent of ulcerative colitis patients do not need surgery, so it would never be a first line treatment based on that statistic. I've heard the odds of colectomy are highest for pancolitis patients.

As far as nocturnal seepage goes, it's biggest occurance is during the initial adaptation period for the first year after takedown surgery. Major plumbing adjustment and your body needs time to adapt. A small intestine doesn't learn to act like a large intestinal pouch over night.

A year in, 47 percent never have nocturnal seepage, 48 percent occassionally have it, and 5 percent frequently have it. Given these statistics are from a paper published in 2000, so today's techniques might produce better outcomes. /www.ncbi.nlm.nih.gov/pmc/articles/PMC1421082/