Hi there. Long story short, I had a loop ileostomy for 11 months to divert a giant stage 3 cancerous tumor attached to my rectum and colon. I had it reversed just over a month ago; everything is healed up beautifully, no pain, and I could go back to the gym tomorrow… if I could stop pooping constantly. We're talking 20-30 times a day, but only tiny gummy worm-sized at most, often turning into diarrhea by the end of the day. Oh, and with only a second-long warning time. So I'm wearing diapers to leave the house. I'm very grateful for that diaper cream I never threw out (my son turns 6 this weekend 😆). I see my surgeon in a few days for my post-op, but I'm not very hopeful for any help. My experience has been that my doctors have been very good at what they do, whether that's cutting and pasting me back together or shooting the bad guys in my body, but aren't much help with anything outside of their hospital door.
My mom actually found this group for me when I was really down a couple of weeks ago. Reading different posts was very comforting. This week, I have found myself very discouraged again. I'm really hoping there is someone out there that can tell me that this isn't completely out of the ordinary and that I should still hold on to hope that I may recover and return to a diaper-free life. Also, any tips for exercises or nutrition? I lost a massive amount of weight through my illness and fear that I am not eating enough and developing bad habits because of this.
I'm sorry you are going through this. As if cancer wasn't a big enough kick in the butt.
There's a thing called LARS, which I think stands for lower anterior resection syndrome (don't quote me on that). It's a set of symptoms including incontinence and urgency that occurs in situations like yours. I don't know much more about it.
Maybe someone else can provide more information. But having a name for it should help you research and ask your doctors about it. They might have to refer you to yet another doctor, but it will at least help you find answers.
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Thank you! I will start looking into this immediately and ask my surgeon about it as soon as possible.
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I wish I could offer advice, but I can't. However, I wish you the best and hope you get some answers. Keep pushing because you have to be your best advocate.
G-Day NicoleC,
Sorry to hear your bad news. When you had the ileostomy, did you handle it well? If so, and the worst comes to the worst, you can always go back to an ileostomy. I went through what you're going through for 18 years; I now have a fantastic ileostomy. All I'm saying is to consider it.
Regards, IGGIE
My Ostomy Journey: Kimberly | Hollister
Hi Nicole, did they remove any of your colon?
Any tests done to see how the rectum/anus/sphincter muscles were working beforehand?
Has anyone recommended pelvic floor therapy?
I didn't really have a reversal as my abdominal colon is gone, so the end of my small intestine connects to the rectum. I don't weigh in too much on colostomy reversals as that is a different ballgame compared to my anatomy.
Yes. Some of my colon was removed. No. No tests were done. Yes. I have been to one session of pelvic floor physio pre-reversal, but I've been so insecure about going post due to the fear of having a diaper full of 💩 😬 but I know I need to get over it and go back.
Definitely go back to physio. Wear a diaper and remember these are professionals. Nothing can happen that hasn't happened before.
Here's one of my embarrassing stories. Maybe it will make you feel better.
When they discovered my rectal cancer, I was already having a lot of diarrhea. Then they put me on radiation therapy, which causes more diarrhea, more urgency, and reduces the ability to control it. Near the end of radiation therapy, I got the urge about 5 minutes before arriving. I'm driving, and there's a lot of traffic and no place to really stop.
I get to the cancer center with some relief. As I stand up to exit the car, everything lets loose. I was only wearing a pad, not a diaper. It's everywhere. I dash to the bathroom. No emergency clothes with me. I'm trying to get cleaned up but getting it everywhere. Fortunately, it was a single-person bathroom. But I'm looking around, and it's just hopeless.
I have to use the emergency call button. The nurse was awesome. She brought me a hospital gown, pants, towels, washcloths, and a plastic bag. She assured me that I wasn't the first person to have this problem. I was humiliated at the time, but now I laugh. I never again left the house without a diaper until I got my colostomy.