Husband Experiencing Severe Pain and Leakage from Distal Stoma

Hi all!
My husband has had a colostomy and distal stoma his entire life. He was born with a series of midline anomalies that caused most of his bowel to be taken out, leading to the need for the colostomy. The distal was left open in case he ever wanted to pursue a reversal. We've spoken with a surgeon about this, but essentially we would be trading a normal lifestyle for “normal” anatomy if he got the reversal (I say it in quotes because the nerves in the anus are all dead, so it wouldn't be much use).

So long story short, he is VERY used to everything stoma and ostomy related.

The issue right now is something he has never experienced before. He is having severe pain coming from his distal stoma (not the colostomy) with a TON of clear liquid leakage, and the pain radiates from the stoma through his pelvic floor. He has never experienced this before and is starting to get really discouraged. We have been to his primary, the ER, the colorectal surgeon, as well as WOCN, and all of which have said basically, “I don't know, I guess we need imaging,” and no one seems interested in trying to help solve the problem.

I have tried searching online, but I can't find anything that describes his situation. I was hoping something like this might help.

Has anyone had this experience? We think maybe it might be because of weight gain in the abdominal area, and maybe it's stretching the colon from the distal stoma causing these issues, but not sure.

It seems like this does call for imaging to see what is going on. I would probably seek out another colorectal surgeon. There is no need to continue going to the surgeon if there is no interest in finding out what is going on. Since a reversal no longer makes sense, it may be time to make the ostomy permanent. By all means, find a surgeon or GI specialist that is willing to do imaging to find out what is going on in the digestive tract.

Agreed with a traveler. Keep your chin up. You will find an answer, here or there. Maybe a referral from a member too.

Good luck. Remain vigilant.

Hello there

I think you have answered your own question, new doctors and imaging pronto.

Good luck

I think the hospital would have better ideas.

How to Get Back to Activity after Ostomy Surgery with Kimberly | Hollister

Agree to a new doctor, a new hospital, and don't take no for an answer. Remember, you have to be your own advocate.

At a minimum... A CT scan... pronto.

You have to be a "pain in the ass." You must push the doctors. To them, we're just another patient. But this is us, and our life. Anything unusual needs proper medical investigation.

Thanks all! We did get a CT and it didn't show anything, but he has an MRI scheduled for next week, so hopefully that will give some answers!

Great, the CT was performed.

A CT does not show everything. I had multiple CT scans, trying to figure out why I had sepsis, peritonitis, and C. diff, that resisted 4 weeks of powerful antibiotics.

Eventually, I underwent emergency exploratory surgery. Turns out hernia repair mesh from many years ago migrated into my intestine and bladder. My colon was punctured. Fortunately, my bladder was intact. The mesh didn't show up on the CT scans. Doctors knew something didn't look right, but couldn't figure out what was wrong.

I agree with Beachboy. I had multiple CTs that didn't show anything, and I too had 2 emergency surgeries. Just make sure you push for the MRI. And while you're waiting for the MRI, it wouldn't hurt to ask if you could get an ultrasound. That's how an ER doc found something with my first emergency surgery. He did a CT and an ultrasound and sat both tests side by side, and he found something.