18 years later

My son's complicated j-pouch surgery was in 2000, at age 8. (I was a regular here for many years.) His physical and psychological health have been severely compromised ever since--he is how 27, and the whole story is much too long to tell. For the past 11 years, he has had severe, intermittent, burning penile pain that seems to be due to urinary dysfunction related to his surgeries. He is scheduled for cystoscopy to rule out stricture or other structural problems. Wondering if others have experienced anything like this. He actually has PTSD from all of his surgical procedures, so  "opening the door" to more procedures is causing untold distress.

Original Post

Connie, I'm so sorry to hear about your son's pain and PTSD. I have PTSD too, although it came from another traumatic event, not my surgery. Even so, I have some nasty memories from hospital. I get very antsy when anyone like a dentist or hairdresser approaches my personal space.

I wish I could offer advice on coping with PTSD, but the only thing that helps me is avoiding triggers. I can imagine the distress of facing hospital procedures.

He has been under good psychiatric care for years. My main question is about the urinary pain and whether anyone else has had anything similar. It’s odd, because it didn’t start until 5 years after his takedown surgery and trauma from improper catheter removal, yet seem to have something to do with the pelvic muscles.

 

I had a similar issue in childhood (and after contracting UC), although it was later determined to be a genetic issue. The pain was due to my urethra being too narrow. I had a surgery to widen it. Ironically my sister had to have the same surgery done for the same reason and she never had UC. As IBD patients we hear the term “stricture” - to my understanding what the problem was is that my urtethra, genetically, was not wide enough to accommodate the urinary traffic going out. So I guess it was a stricture of some kind.

In adulthood, I ran into a similar problem with sinus infections and an ENT doctor told me the passage from my sinuses to throat was way, way narrower than normal. As a result, drainage was improper/clogged resulting in repeated sinus infections and headaches.  I also had surgery to widen the sinus passage and this issue, like the penile issue, was surgically corrected.

I don’t know if a structural issue with the urethra is the problem but a good urologist should be able to figure it out. Such an issue would cause UTIs, and pain. Could also be a kidney stone or stones, which persons with IBD surgery like your son had are at risk for. I never had one but my surgeon told me we J Pouchers are at higher risk for them.

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