Pain after illiostemy reversal

vinny1
vinny1 Member Posts: 10
edited March 2014 in Colorectal Cancer #1
I have posted on this board before. My husband had radiation, chemo. and surgery Dec. 06 He then had operation on May 30 07 to reverse illiostemy. Since reversal it has been so painful; chemo, radiation, surgery has been a breeze compared to this. He is okay all day, come evening time he is constantly running to the washroom, where maybe something happens. He gets terrible itching, a leaking of liquid and a extremly painfull burning sensation. He has a J pouch. The Dr. looked at rear and said yes you are very sore but early days yet. Some days are okay others are not. Has anyone dealt with this, any ideas what is going on? He read on internet site tonight someone who has same symtoms and was told it may be a poloyp. He had a sigmoidoscopy before surgery and am assuming everything was clear. Can poloyps come back that quickly?

Thank you.

Virginia

Comments

  • davidsonxx
    davidsonxx Member Posts: 134
    #2
    I had my ileostomy reversed on April 16 '07. The first several weeks were really bad. I went from one extreme to the other. Gradually it started to even out. My rear was very sore and raw from the diarrhea and wiping. I found 2 things helped. I used Tucks pads instead of paper after a BM. They are a lot easier on the rear. My surgeon also prescribed an ointment to be used to protect the skin. It works very well and is call Calmoseptine ointment. Warm Sitz baths also help relieve the itching and burning. I didn't need a J pouch since my tumor was at the top of my rectum.

    It takes time for the bowel to be retrained to work properly. The amount of time varies from person to person. A month and a half is not a lot of time evven though it feels like an eternity. You just have to be patient. Believe me I know how hard that is. Fiber can help bulk up the stool and help with leakage. Try to pay attention to what food he eats on the bad days. I found I was hyper sensitive to foods that only mildly bothered me before the surgery. I had to stick to a very bland diet at first and gradually introduced different foods to see how I responded. There have been several people on the site that became lactose intolerant after chemo so you may want to limit dairy to see if it helps. The fact that he has good days and usually does well all day are both good signs. There are also some exercises and web site that has information to help with the retraining. They seem to really help some people while others don't see much benefit. I'll look for the web site and post it later.

    Tell your husband to hang in there. It does get better with time.
  • Faith4Cure
    Faith4Cure Member Posts: 405 Member
    #3
    Hi Virginia

    When I read your post I feel like I could've written it myself! My husband is on the same timeline as your husband is. He had surgery in December 06 also and had his reversal one day after your husbands. His symptoms seem much like your husbands except some days his problems last all day and not just in the evenings. The terrible itching, the leaking of fluid and the terrible pain has really gotten the best of him. Like your husband, he thought the chemo and radiation was a breeze compared to this. We thought we had it made when we got this far. Some days he has hardly any symptoms, then it comes on him all at once. We cannot understand out what causes the problems---we watch the food that he eats. We have found that warm baths using Aveeno, and using several over the counter creams have helped his symptoms. I understand from our surgeon this is not uncommon. Please e-mail me at this site if you have any questions or suggestions for us. Hopefully we can help each other out with this one.

    Faith
  • goldfinch
    goldfinch Member Posts: 735
    #4
    It was 2 years ago, but i remember the discomfort. Treatment is a little harder to remember. I developed an anal fissure which didn't help.
    It is early yet, in terms of having the new rectum adjust to it's new role. I think one of the things that helped me form things up a bit was metamucil wafers. I started with one in the AM after breakfast. When I was tolerating this I added another after supper. This really seemed to help the most. In terms of diet tried to stay away from fresh fruits, esp citrus (boo). And made sure vegies were well cooked, but relaxed on that as things got better. I don't remember the time line, but it DOES get better.
    In terms of making my butt feel better...warm baths!!!! I practically lived in them. They felt so good. I also used baby wipes to wipe with. THis felt so soothing. I don't remember any calming lotion that was particularly effective, except for the prescription cream that was needed to treat the fissure. And that wasn't calming so much as finally effective at healing the fissure. That took a while.
    Hang in there. Believe it or not it's still early. His jpouch did not know this was going to be it's job when it signed up with him. It's learning with you guys.
    Mary

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