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Still need diapers at night four months post surgery?

Posted , 2 users are following.

Silverback123
Silverback123

Hello everyone,

This is a concerned boyfriend writing on behalf of my ex-girlfriend (weird situation). 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!

0 likes, 5 replies

5 Replies

  • sheila91262
    sheila91262 Silverback123

    Posted

    Hi, Sorry for the diificulties. Firstly I'm pretty sure she had the large intestine removed, an ileostomy. I have written lots under J pouch as I wanted to get some feedback before my son had a reversal. His is 18 months old and very successful. Does she ever take a  thickener to add to food as the output can be quite liquid? Does she have any problems during the day? and are her rectal muscles working well during the day to control output? There are support groups which can be helpful. Strengthening the muscles by specific exercises can be beneficial, did she practise these before the last op?

    The surgery has problems but these can generally be improved upon, we were told. My son had his surgery at John Radcliffe Hosp Oxford if she wants a second opinion, they were excellent. I do hope things improve for her, it is such a hateful disease and the reversal can be a life changer. Good luck.

    • Silverback123
      Silverback123 sheila91262

      Posted

      Sheila, thank you so much for your reply, I really appreciate it. Yes you are right, it was the large intestine, typo on my part! She does not take a thickener with her food, which is an interesting suggestion that I will put to her. In fact, her diet remains very poor and inconsistent despite my best attempts to nag and guilt her into being better with it.

      She doesn't seem to have any problems during the day. Her rectal muscles seem to work fine during the day. She did some exercises but not a huge amount of them. Hopefully these could be of assistance. Would you know any good resources with demonstration videos for these kind of exercises?

      We are actually in Ireland but thank you very much for the suggesion. The surgeon seems to be a good guy, so we are pretty confident he is referring her to someone good for a second opinion. It sure is a hateful disease, especially for such a young woman. She has been terrific through it all though, very impressive.

      I hope your son continues to have good health and thank you so much once again for your input.

    • sheila91262
      sheila91262 Silverback123

      Posted

      There are pelvic, Kegel exercises described online, esp on the J pouch online group. Where would we be without the internet? The thickener is a food additive which is  cereal based to be added to all sorts of food, but there are lists online which naturally help such as bananas. My son starts the day with porridge and snacks on bananas. The diet is important as the salt intake and liquids need to be increased after losing the bowel. I would suggest that the muscles are prob the problem as they relax at night. She could speak to a stoma nurse for advice and ask to be seen at clinic. She has youth on her side and ileostomy was not an emergency so she would hope for a good result. My son was so keen for it to work and his stubborness has lead to him following their advice about pouch size increasing by holding and delaying and using those muscles so they stregthen. Our attitude was the hateful disease is gone now and the new normal life is begun so onwards and upwards.

      We nearly lost our son as he perforated in two places in the colon and they didn't take him into surgery until he was very ill, this was the local hosp not JRO, so now that he has had this wonderful surgery we want the best. Working hard to achieve this is part of the plan. I hope things get better soon. Sheila.

    • Silverback123
      Silverback123 sheila91262

      Posted

      Once again Sheila, thank you so much for your input. All that makes a hell of a lot of sense. You have provided me with some great information here that I can pass on which hopefully she will take on board and be optimistic.

      I hope you and your family have a wonderful Christmas. Take care.

    • sheila91262
      sheila91262 Silverback123

      Posted

      Thanks for your kind words. Dealing with this disease is very hard on family and relationships. We consider ourselves very lucky. I wish you all the best.
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