IRA to Ileostomy - Is It a Worthwhile Transition?

Hello all, I'm here to ask for support in making a major decision. I figured this would be the best place to gather insights and information, so thank you in advance.

In February, I had a total colectomy with ileorectal anastomosis. I thought this would be my best option, as the surgeon made an ileostomy seem possible but not optimal. As I have been healing these past 6-ish months, I can't seem to get on top of the bile diarrhea. I also have no gallbladder, which I think is exacerbating the situation. If I live on fiber pills and nothing else, I get a more formed stool, but still diarrhea. The fiber makes me full. I've lost about 10 pounds since the surgery.

My surgeon suggested pelvic floor therapy, and after researching what exactly that entails, I discovered I am already doing pelvic floor exercises. And I refuse to live on Imodium or something similar; the reports on these drugs are scary! I don't need any other issues, thank you very much!

So with the constant diarrhea and a “weakened anal sphincter,” I have accidents. Not every day, but multiple times a month. It's caused me to be a hermit and stay in my home all day, every day. Which has led to me watching videos regarding ostomies/ileostomies.

I'm curious if anyone has been in my position and opted for the ileostomy? And if so, are you satisfied with the results? It seems like freedom to me, and I understand the implications, but I feel there's not really another option.

Thank you!

Hi, what was your reason for colectomy? When you say total colectomy, do you mean they removed your rectum and anus as well? Or just your abdominal colon so the rectum and anus are intact? Did they remove your colon and put the IRA directly into use, or was the new connection given healing time? Did they do testing beforehand to make sure your muscles could handle an IRA? I have an IRA and lost my gallbladder 12 years before I lost the colon… no issues that I know of without the gallbladder at this point, but that's just me.

It was for colon cancer/Lynch Syndrome. They removed the entire colon; the anus/rectum remain. They never tested to see if my anus/rectum could handle anything at all. I was eating a bagel 3 days post-op. Kind of strange now that I think of it.

I have always had issues with constipation, and the need to strain is always there. Especially with the diarrhea, it just wants to push and push. I'm afraid to tear something. I've had blood a couple of times; my anus is burning in pain most days from the bile. It's torture. Creams and whatnot don't really help.

I am currently going through a reconnection and I have a foot of sigmoid left. I'm still in the hospital and I've been posting my ordeal on here. I will post information about the lotion they put me on that's been very helpful to stop the acid pain. I'm on anti-diarrhea medicine, 4 mg every six hours in a 24-hour period. And that is what is enabling me to leave the hospital. I hope to be a little constipated, but much better. I hope the lotion can help you. It's a steroid-free, original formula anti-itch lotion by Rugby. It can be applied every two hours, from what they tell me. I know it's an itch, not a burn, but it works.

Hi Anne Shirley, to answer your question, I had a J-pouch removed after five years of the discomfort you're describing, plus meds to try to control the very symptoms I had with my ulcerative colitis. It was messing with my head. I got my life back with my permanent ostomy. That's just my story; others who've been reversed with a J-pouch are satisfied with their pouches. I'm sure you'll hear from all of us. But if you definitely want to eliminate your pain, get back to your life, and are okay with having an ostomy, I'd recommend it.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Anne with an E,

I'm sorry to hear that. Did they do any radiation or chemo? If people are healthy beforehand, some surgeons will perform the subtotal colectomy, form the IRA, and put it directly into use, like in your case. I was fairly sick and tanked about a month before my surgery date, so my colorectal surgeon said a loop ileostomy for me first was non-negotiable so my body could heal, rest, and maintain weight. Was it a big research or teaching hospital where you had your surgery? From people I've talked to, those who have had an ileostomy while the new IRA connection heals tend to fare better than those who go directly to the IRA being in use. The length of the rectum also matters. That sphincter muscle working is a big deal… even if you're doing pelvic floor exercises at home, a good PT specially trained can help you target the specific areas you need to work on most and also help identify issues.

Hello CC, no chemo or radiation, thank the Lord!

Have you met with a dietitian?

No, I feel as though now that the cancer is gone, I've become a problem. I've been researching online what to eat and avoid, etc.

My diet consists of pasta, bread, oatmeal, fiber capsules, applesauce mainly. I eat a sandwich here or there but rarely finish it. Eggs and some proteins. I drink about 5 liters of water a day.

When I started the journey to discovering the cancer, I went from a lifetime of constipation to suddenly having diarrhea. They told me the diarrhea wasn't from the colon cancer, and we haven't exactly figured it out yet. One oncologist I saw suggested I may have neuroendocrine tumors in my small intestines/liver but I've yet to have the dotatate PET scan. That's upcoming. Symptoms for that include diarrhea. So I don't know if diet or anything will help.
I so appreciate your advice and suggestions! 😊 I am so happy to have found this site!

G-Day Ann, hang in there and I hope they get you sorted soon. Regards, IGGIE