• JimmyB's Avatar

    JimmyB started following

    User: Skyemberr

  • JimmyB's Avatar

    JimmyB asked a questionColorectal (Colon) Cancer

    ileostomy and bowel movements

    15 answers
    • Skyemberr's Avatar
      Skyemberr

      Jimmy when I mentioned it getting better over time I meant over about a year and a half. I am still not normal, but the bad days are much less frequent. I definitely am glad I was lucky enough to be able to have a reversal!

      The roughest time is right after the reversal when your body seems to have no memory of how it used to function, and you have to be close to a bathroom.When The reversal first started working I was in the hospital, and I spent the whole night going back and forth between my bed and the bathroom. The nurse was very understanding. That was the worst night out of all of them and I was ok still.

      I spent the first month in depends because sometimes there was zero control.
      It got better though and I can wear normal undies now! I don't worry about going out in public and having an emergency at this point. That's not to say I don't still have LARS days. I really do and there are no mistaking them. I sort of know when I am due for one and tend to plan to be close to home or only making short outings on those days because I know I will be in the bathroom 40 times. My body starts to feel bloated and funny, so I know I have a LARS day on the way.

      I usually let my body do what it wants to do one those over active days until I either can't handle it anymore or I need to sleep. At that point I will take Lomotil or dicyclomine or BOTH. That will usually stop things overnight so I can sleep. A lot of times my body is just being overactive by that point at the end of the day, so when I wake up the next day it will act like I am having a normal day again.

      The interesting thing is that even though my rectum is gone, my body has slowly adapted and the cells that are there now are doing the job of rectum. I don't know if this is because there were some of those original cells left or if my cells adapted. Nevertheless, it is MUCH better than it was when they first reversed it, and I am very grateful that I no longer have an open wound in my tummy from the ileostomy. I was thinking that today in fact.

      8 months ago
    • Skyemberr's Avatar
      Skyemberr

      Ohhh, and your question about work.... I have been so ill that I am not working. I don't know how ill you are, but I would say it is reasonable to want to work from home for the first month or two depending on how you are doing after the reversal.

      8 months ago
    • JimmyB's Avatar
      JimmyB

      Skyemberr, thanks so much for the response.
      It sounds like it's been and continues to be quite the journey.
      Like you, I try to keep gratitude for being able to have a reversal, in the forefront of my mind. Still sucks though ;)

      Im happy to hear you're 'normalizing' as your journey continues.
      I was told that the large intestine where the rectum used to be, will ateast stretch to some degree. I wonder also if your idea of the minor amount of rectum removed, will stretch and help normalize as well.

      It's not easy to find information on exactly our issue and I wonder how common your recovery process has been. I wonder if there's a spectrum from few to horrible side effects.
      It seems to me that your case makes good sense since the rectum removal dramatically changes how the whole system works.

      I don't have a surgery date yet, so it could be months away.
      I'm a worrier with anxiety and your story worries me when I think about quality of life and what kind of work I'll be able to do.

      I'll keep doing some casual research and look for more stories.
      I wish you the best and look forward to updates.

      8 months ago
  • JimmyB's Avatar

    JimmyB started following

  • JimmyB's Avatar

    JimmyB shared an experience

    Side Effects (Chemo brain)

  • JimmyB's Avatar

    JimmyB shared an experience

    Radiation

  • JimmyB's Avatar

    JimmyB shared an experience

    Drug or Chemo Therapy