Went for my check-up yesterday with the stoma nurse. Started off good news:
Nurse said how healthy I was looking and how great my little friend is looking. I have a small area which still hasn't healed, but the nurse says it's all okay and I'm using some powder that the stoma team gave me to help with the healing, and I go back again in a month for another check.
Then the disappointing news:
I hoped to get the biopsy result through, and the nurse didn't have them. I have to go back as an outpatient to see the surgical team to get those. Basically, every test I've had says ulcerative colitis, but they were testing my large bowel to make sure there were no signs of Crohn's. It's unlikely to have been anything other than UC, but I was a little disappointed.
Then the bad news:
Working on the basis that this was UC - the colitis was also in my rectum. I have a few symptoms (which I'll spare you), but I thought it would just go. Maybe that makes me sound silly, but I guessed if they'd left my rectum, it was okay. Apparently not!! They left it there in case I want a reversal in the future, but I've now been told they need to remove it as it can turn to cancer. I came out and was so upset, I didn't want it reversed and thought my surgery was over. I'm assuming that if they remove my rectum, they can do a reversal at the same time should I want it (I have an ileo).?!?! The nurse also told me that had they not done the op, the colitis would have killed me as my large bowel was in such a state. I knew it was bad, but I think now it's just hit me as to how ill I was. I desperately don't want another op, but I had no idea I'd needed one. Feel a bit of a wimp saying that when I read what others have been through on this site, but feel like the battle still isn't over.
I got quite upset when I got home, and I don't think my husband can understand why I cried. Surely that's normal - to get upset when you've been told you need yet more surgery when you thought it was over? He even asked if I was still crying later on because I looked upset. I've accepted I have a new 'little friend' and the thing saved my life. Can I ask, has anyone had trouble dealing with it? Has anyone's partners found it hard? When I get dressed, I have to hide it because he isn't ready to see it. It must be so hard for him to accept and to see someone you love suffer, but I really want to move on. I would like to point out that although my accessories are see-through, I have some lovely colored covers so you can't see my stoma.
I'm so hurt and so confused. I don't want another flipping op. I don't wanna have to walk around hiding what is now part of me. I've got constant mouth ulcers which could be because I'm run down, but I get them with colitis, and I've still bloody got that in part of me, and I don't know how to deal with it. I thought I was doing so well.
Sorry that was so long. Thanks for listening (well, reading!!!)
Hope you are all well,
Mrs. O xx
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