Colostomy problem: Rectal discharge 18 months out

After 6 weeks of chemo and radiation I find myself facing a colostomy. The radiation left me with fecal incontinence and the surgeon feels a colostomy will give me a better quality of life. I will also be getting Immunotherapy. Hopefully we can stop this cancer. I have been reading a lot about colostomies, but I know first hand experience will be better. There is so much to know and I’m feeling overwhelmed. Please give me your best tips and advice. Thanks!

@mahmudhasan @kenc @marco789 it sounds like you haven't found any solutions for rectal discharge. What helps?

Any ideas to @patriotspride with the burning sensation without discharge?

@rioa21, will be getting a new colostomy. What helpful tips would you offer to help them prepare?

I checked with my gastroenterologist and they prescribed hydrocortisone 2.5 rectal cream.

That has provided some relief for that issue and seems to also help to discharge any mucosa that builds up due to “ phantom effect” of having that part of my colon detached from the rest that’s now part of the colostomy bag
Process.

Wish I could provide specific advice, but I have beem dealing with pain, etc since the surgery with very little relief. Suggest making sure the surgeon explains all the ramifications, which may result from the surgery. Also, please find a surgeon that specializes in colorectal surgery.

My Mayo provider has prescribed budesonide rectal foam, which seems to help reduce the amount of discharge. I tolerate it very well, however it is not a "magic pill", as I believe that a magic pill doesn't exist. I still have inflammation from this long-term Crohn's flareup, so all that I can do at this point is to mitigate the risk of accidents... which includes being near a bathroom when possible, using the B-sure pads, oral prednisone and foam enemas.

I will be seeing a colorectal surgeon tomorrow at Mayo Clinic in Jacksonville. I have a list of questions for him. He is the second surgeon that I’ve seen. The first was at MUSC. I’m disturbed to hear about your pain. Is it from the stoma? The incisions? Please explain more. I want to be as prepared as possible. Thanks

The stoma is fine. The pain and pressure feeling emanates from the area up inside where the annus use to be before the surgery. Also had several abscesses right after the colon was removed. Those eventually cleared up, after the rectum was removed, but left a large scar on my abdomen from the drainage tubes. Just like most medical procedures we, along with the doctor, need to evaluate the benefit and risk factors. Hope your surgery is very successful with no after effects. Many are.

@rioa21, how did your appointment go?

My appointment went very well. The surgeon has much experience in the APR surgery. He patiently answered all my questions and took time to share his thoughts on my condition. I’m waiting to get in for a MRI. The next available appointment isn’t until October. So I’m on a wait list. I have been experiencing stomach pains and will call the doctor’s office on Monday. I hope I can a MRI very soon and then schedule the surgery.

I have this happen and my surgeon said its normal. I have even passed gas rectally one time. LOL