Seeking Advice on Colon Surgery and Recovery

A year ago, I had emergency surgery for a perforated colon caused by ulcerative colitis. The UC onset was very sudden and escalated quite quickly. Apparently, how it all came about is quite rare. Anyway, I was left with a small amount of colon and an ileostomy. A month after coming home from the hospital, bleeding from the remaining colon has persisted. I have been on infliximab infusions over the last three months. Since the last infusion, the bleeding has stepped up a pace.

Earlier this week, I had an appointment with a surgeon. I was given the option of a pouch being developed or the remainder of my colon removed and the rectum closed. I have chosen the latter.

Because of the way our health system has been hammered, like the world over through the pandemic, I am now on a waiting list. I am pretty much over the stomach pains, the nausea, the bleeding, and the lower back pain.

My questions to you are:
What has been your experience of this surgery?
What is the recovery like? (I know we all heal in different ways, I just want a rough idea of what I am in for).

Does the dry skin ever go away?

Looking forward to reading your replies.............

Jenny, 147, the same thing happened to me about 26 years ago. I had part of my colon left and continued to have problems with the piece I had left. I opted to have the rest of the colon taken out. When I spoke to my surgeon about the pros and cons, I love to travel and always have to worry about a bathroom. I haven't had any problems. Of course, there is a recovery time after a major surgery. I have never regretted having the second surgery. Good luck.

Sounds like you'll be way better off having the surgery. I would push my surgeon to move me up the waiting list so I'd be done dealing with the symptoms sooner. I know the pandemic really messed things up worldwide, but being put on a waiting list for a surgery that is needed to stop suffering is ridiculous.

Hi Jenny, I initially wanted to stop after one surgery - colon removal and ileostomy put in place. My surgeon "encouraged" me to go for a J-pouch, which was two more surgeries. Three surgeries in ten months. After having a less than positive experience with my J-pouch for five years with cuffitis and pouchitis and constant antibiotics that were affecting my health, I opted for a fourth surgery, my permanent ostomy. I know there are people who are enjoying life with their J-pouches and I wish I was one of them. If you are at peace with your decision, I think it's a great one......

You will probably feel exhausted for about three weeks and your butt will be sore for a few weeks more. You may lean to one side for a while. Don't use a donut cushion that can spread your cheeks apart and pull on the incision (mine was internal), use a flatter, soft one. I had several microbead cushions.

I hope you don't have to wait too long!

Thank you everyone who replied to my post, I appreciated them.

I knew if I asked here I would be given answers by the "been there, done that kids", thank you.

I have had a letter from the hospital and been told I will be hearing from them within four months, if not sooner as I have been placed on their call up list.

Sorry it took me so long to respond, been having internet issues.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hi J,

Since you got some time on your hands, I'd suggest you search this forum for other topics like yours. What you're asking has been discussed on here a lot over the years, and there's some good info on how long your butt will be sore, when you can sit down normally, what to do until then, etc. Lots of good info for the taking, if you can find it. Seems the volume of folks on here ebbs and flows with time, and many who had done what you're about to go through aren't active much, if at all. But I think you'll find the conversations they had, discussing what you're trying to find out, very informative. There's a ton of info on here, it just takes a bit of time to find it all... and you seem to have some of that time available... so do some digging! I think you'll find it very helpful.

;O)

Bob