Seeking advice for proctectomy scarring - extreme itching and tightness

I had a total colectomy with ileostomy 10 years ago and then a proctectomy 6 years ago. No issues until 6 months ago when I started having extreme itching where my bottom is sewn closed. I have no drainage, no rash... seems to be scar tissue that is stretched tightly. Any suggestions on how to address this with a doctor and even what type of doctor? The surgeon who performed this surgery has moved away to a new hospital. I'm at a loss how to get help for this and it's affecting my quality of life. Ty

Hello Ty.

Thanks for your post, although I'm sorry to say that I have no suggestions for you about this issue. However, the problems with scarring is something that I am very interested in so, I am looking forward to reading the more informed replies to this post soon.

Best wishes

Bill 

Hi Ty,

Not sure where you are in Tennessee, but there's a number of supposedly good gastro hospitals, with #1 being Vanderbilt UMC in Nashville. Others are in Memphis, Knoxville, Bristol, etc. I'd suggest you call them and talk to their gastro on call and see if they have any experience with your issue. I'm guessing you're seeing a gastro now.......does he/she have any recommendations? I wouldn't let the fact that your original surgeon moved away have any effect on your deciding to pursue a new surgeon. The old ones get set in their ways, while the new ones lack experience. Six of one, half a dozen of the other, I suppose. But they do make continued surgical advancements. So call around and when you make enough calls you'll see things start to jell in terms of recommendations and who'd be the best surgeon for you. Someone's name will come up from a variety of sources.......once that happens you can focus on getting in touch with that surgeon...or gastro. It sucks that finding the right docs takes leg work on our part, but it does.

Regards,

Bob

Hi Ty,

As Bob said, check out the doctors. Check them out online for reviews, like vitals.com.

Hey,

I had a plastic surgery to take care of closing mine up at or actually just after my gastro surgeon did the ostomy. Not sure what your surgeon was for that part but I am sure your GP can put you on the trail of a current surgeon to take care of your issue. Good place to start.

Puppyluv

Hi, I can't offer you any solution, but I know a physician who is friendly, brilliant, and though his main practice is with gastro, he is comfortable answering questions about ostomy-related issues. He was from Vanderbilt...

Dr. McDowell. 1-615-284-1400. Nashville.

I had questions about the right inches of colon that was left and sewn. Yet, I was pooping rabbit poops once in a while. He reassured me that it was quite normal because of mucus buildup. He is very personable. Make an appointment today!

Currently going through the second episode of this.

I first got it before and after a hernia operation in 2011.

This was a good ten years after I had the original proctectomy and I had been doing well until then.

It seemed to settle down apart from some daily twinges if I stretched too quickly, but I then went back to being active, fit, healthy until about three weeks ago, when it all flared up again.

I'm told it could be one of many things. A trapped nerve, a version of pudendal neuralgia, it could be levator ani syndrome or I could have simply got coccydynia from all the cycling I have done over the past eight years.

Right now it's positively very irritating and getting me down too. Mix of itching, hot and cold feeling, feeling of pressure or a lump. Standing and walking give a bit of relief as does ibuprofen gel.

Again doctors tell me it's age, scar tissue not stretching, plus the above. Seeing a couple of physios, but I guess things like coccydynia, levator ani and pudendal neuralgia are going to be just as bad in scar tissue and surgically altered muscle as usual, if not worse!!

My sympathies, because I'm going through similar (again)!!!