Colon Issues Worsening After Ileostomy: Seeking Advice

CocoFlares

Jul 28, 2025 4:00 am

Hello,

I was curious if anyone has had the same issues as me. I have had Crohn's disease for 25 years and an ileostomy for the past 4 years. The first 3 years were great, and then I started noticing I needed to make frequent bathroom trips to expel mucus. Currently, I feel as bad as I did before surgery, with frequent bloody "bowel movements," incontinence, rectal and abdominal pain, nausea, and vomiting. My colonoscopy showed that my colon is badly inflamed and a stricture has formed. I was taking Rinvoq this year to help with my fistulae, so I wasn't med-free.

Has anyone had their colons get worse after surgery? And what were your next steps? I'm quite frustrated at how aggressive my Crohn's seems to be.

Unfortunately, I do think I probably will have to have my colon removed in the future, but since I have Crohn's, I know it can just manifest elsewhere.

I've been on Remicade, Imuran, Humira, Cimzia, Entyvio, Stelara, Rinvoq, and a constant stream of prednisone.

IGGIE

Jul 28, 2025 4:18 am

G-Day Coco,

I think you're right about having to have your colon removed, and the sooner the better. I notice you're taking Imuran; I had a very bad reaction to Imuran, so keep an eye on it.

Regards, IGGIE

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AO166

Jul 28, 2025 6:41 am

Hello

I have Crohn's for 31 years. I had my colon removed completely, but it came back in my small intestines a year after surgery, as you said (although for 16 years before surgery, only the colon was affected). Also, I started having other autoimmune diseases. I tried all medicines like you; now I'm on Skyrizi. I really don't know if you should get your colon removed or not, but if it is causing pain and affecting your quality of life, do it.

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Keesha

Aug 15, 2025 6:37 am

What does your gastroenterologist and/or surgeon recommend?

Were you going to try to reconnect to the colon at some point? Is that why it wasn't removed when they did your ileostomy?

Just curious...

For me, they removed my rectum, the rest of my colon, and several feet of small intestine when they did the permanent ileostomy. Prior to that, I had had multiple resections of my colon and a temporary ileostomy trying to save the colon and retain use of my rectum, but I wasn't responding to the medications available at that time. I ended up with Crohn's in my rectum.

looking forward

Aug 15, 2025 8:23 pm

Hi, I have a friend who had Crohn's. I had an ileostomy; he did not, but he continued on meds. He just died.

How to Adjust to Life with an Ostomy with Bruce | Hollister

IGGIE

Aug 16, 2025 8:03 am

G-Day Marecat17,

You will be a lot better with your ileostomy, and I hope it all goes well for you. Get samples of all the bags from the different companies and try them on the area that you will have the ileostomy so you can find the system that's best for you. You will test to see if any of them have a reaction to your skin. A nice flat spot is what you're looking for. Good luck, and keep us up to date.

Regards, IGGIE