Severe Pain After Sigmoid Colostomy: Seeking Advice and Hope

Hello. I'm new to this forum. I joined with the hope of getting some insights from ostomates with similar experience. The surgeon who did my surgery and a dozen others I have consulted since do not have any idea of what's going on with me. They tell me that they have never had a patient experience what I am experiencing. I'm a very private person, but I am desperately looking for some answers to how I can deal/cope with my condition and whether there is any hope for me. That's why I'm sharing my nightmare journey with you all.

Here's what happened. I reluctantly had an end sigmoid colostomy seven months ago in July 2022, because of what my GI doctor and my colo-rectal surgeon thought was obstructed defecation due to my pelvic floor muscles not coordinating properly. The surgeon told me that if I had a diversion colostomy, my pelvic floor muscles would get some rest and with proper pelvic therapy, most likely will start behaving and I will be able to poop through my rectum and anus again once the colostomy is reversed. What he didn't know was that after the colostomy surgery, I would get severe pain in my anus, rectum, penis, and belly which keeps getting worse, not better over time. I have tried every kind of pain medication and therapy out there including muscle relaxants, nerve pain reducers, prescription and over-the-counter pain relievers, TENS machines, suppositories, enemas, ointments, creams, homeopathic and naturopathic remedies, sitz baths, and pelvic floor exercises. Nothing has given me any relief.

Sorry about sharing this gloomy story. Does anyone have anything they can share that would shed some light on what I am going through? I respectfully ask that the answers be sensitive and not make light of my hellish journey by being humorous. Thank you for reading this.

Most of us have been through hell and back. No worry about people making fun of your pain. I hope someone can help you. Take care.

Very sorry you are going through this - you have come to the right place seeking help/answers.

Hoping someone on this site can help you to find the answers you desperately need. jb

Hi Matt,

I have to say I have not had a similar experience as you, nor have I ever heard of anyone having something similar. But I have to ask... where did you have your surgery done? Was it at one of the larger hospitals... Hopkins, Washington Hosp Center, Georgetown? Your profile says 'Maryland', so I'm guessing you had it done around here. You said your docs thought your bowel obstructions were caused by weak pelvic floor muscles... but usually, it's the other way around. Meaning constipation and the constant pushing you do when you're like that weaken the pelvic floor muscles... not them getting weak on their own and then not helping you defecate... unless you're really old and/or female... and I assume "Matt" means you're a guy. If I'm wrong, I apologize.

But going with what your docs said... what did they say caused the pelvic floor muscles to weaken in the first place? Were they able to confirm this in any way... or was it just an assumption going into the surgery? You must have had labs recently... so what is your bloodwork saying... specifically white count and CRP? Have you had any imaging done in any of those areas?

I'm pretty sure the only thing in common with all the pain locations you mention... are your pelvic floor muscles... so did you have similar, but less intense pain BEFORE your operation? When you do your pelvic floor exercises... does that trigger or make the pain worse... or does it come at completely random times? And does the pain occur at all those places at the same time... or at different times? Sorry for all the questions, just trying to bracket things a bit.

;O)

Bob