Nerve Pain After Colostomy: Seeking Relief Tips

Hi there, ostomates. I was just wondering if any of you are dealing with nerve pain four years post-op. I was diagnosed with stage 3 colon cancer in 2021 and had to get a permanent colostomy and a total proctectomy (aka Barbie butt). I'm in excruciating pain and was hoping to get any tips or ideas for relief. Doctors aren't being very helpful, and I feel so alone.

I'm sorry, Mamabee. Chronic pain is awful. I'm assuming you mean the pain is in your butt. The disease that brought me to my permanent ileostomy/Barbie butt is different from yours. I'm sure others with your experience will chime in.

I take Gabapentin for nerve pain (not in my butt but somewhere else). Has your doctor suggested these?

I have chronic pain for the last 4.5 years. They first put me on Tramadol, and it didn't do much, plus it made me feel like a space cadet the next day. I fought to see Pain Management, and they couldn't figure out how to treat it since I have multiple issues, but my pain is more in my abdomen from what they think is from so much scar tissue from 14 JP drain scars and a huge midline scar, plus the fact that I have chronic pancreatitis. So it was either Lidocaine patches or trying gabapentin, which my kidney doctor said would be the best out of the three pain management recommended. But I have yet to try it due to other health issues going on right now. But I found that if it's not nerve pain in a specific area, like the back, they're clueless. I told them abdomen, back, and hips, and since it mostly was in my hip and abdomen, they couldn't pinpoint it because of too many different nerves in the area. The crap thing is the hip pain I was getting after the third JP drain was taken out in July wasn't nerve pain. Turns out I had another abscess...

I'd say keep fighting until you find something that works, and if you have multiple doctors like I do, keep them in the loop. My kidney doctor is on top of his game; I've asked him his opinion. Too bad I can't say the best for my GP, but when you're a complicated patient, they're clueless. Hope you find some kind of relief because I know how bad it sucks 🫂

Pain where you had surgery? And is it pain or discomfort? If it's actually pain, you should be seen.

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

My mom was put on Gabapentin about a year ago, but I was distressed to know that it's not something that you can just stop taking like Tylenol. A neurologist told me that the dose has to be gradually reduced over time because otherwise, it can cause seizures. Nothing is ever simple. Even Tylenol can cause severe liver damage.

Ask your doctor about seeing a pain specialist. It may be possible to inject a nerve block, but they need to figure out what is causing the pain. I had spinal stenosis and was sloughed off for years until I finally saw a neurosurgeon and had a laminectomy in 1995. Pain can be caused in one area and felt somewhere else, so it's hard to fix. You have to be persistent.