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Male sexual problems with abscess/fistula

I'm new here so hello everyone. There doesn't seem to be very much online about Crohn's and sexual health and I'm not sure if that's because Crohns doesn't normally cause these kind of problems or because people are uncomfortable talking about it. If it's that people are uncomfortable I hope I can bring it out in the open a little bit.

I'm a 27 year old male. I don't know if I have Crohn's or Colitis. Everything has pointed to Colitis so far but now with this fistula my doctors say they think I have Crohns, but they can't tell for sure. I'm not even sure if it's an abscess or a fistula. There's an opening on my left butt cheek but i guess the surgeon can't be sure that the opening opens at another end, so it could be an abscess if there's no other opening, but guessing by my bowel movements i think it opens inside of me.

But basically what I'm worried about is my inability to get a full erection. I can't prove that the fistula is causing my urological problems, but i have pain on the left side of my genitals that seems to be 'connected' to the fistula pain. If I touch my genitals it hurts into my butt area and gives me the urge to have a bowel movement, sometimes uncontrollable (seriously!).

I get twitching from my butt to my genitals when i try to pee or have a bowel movement. Did I mention i am almost unable to pass a stool: the muscles in my rectum wont flex. My colorectal surgeon said that the rectal dysfunction has been caused by the fact that the muscles in my bowel spent so much time being soaked in 'infectious material'. Could that same effect be causing my sexual dysfunction. And if so does anyone have any idea if it will come back once this fistula is healed.

I have seen four urologists and they all guess that it must be caused by my IBD. I finally have testing coming up in a few weeks - a penile doppler and an ultrasound. It has taken way too long to get adequate urologic care!

I'm just hoping that there is someone out there that can tell me about their experiences with this. I'm 27 and I'm afraid that I'll never be able to have sex again and that I'll be lonely for the rest of my life:(
 

David

Co-Founder
Location
Naples, Florida
Hi halfstep and welcome. Wow, what a traumatic experience you're going through :( I'm so sorry, that must be so tough.

*hugs*

I know you're asking for personal experiences but I have none and your story has me curious. If you're not interested in sharing, just ignore me and hopefully others will be by to share some experiences.

With that said, my questions:

1. That they aren't able to tell whether you have Crohn's or Colitis is interesting to me. Were you diagnosed via colonoscopy and the biopsy was "indeterminate" or inconclusive? What's the story there.

2. That you have genital involvement and symptoms of IBD that can't be differentiated is interesting to me as well. I say this because there are various STDs that can actually mimic IBD AND cause fistulae. Chlamydia, Syphilis, Gonorrhea and HIV come to mind first. I'll throw tuberculosis in as well as it can manifest in the intestines and genital area, mimic IBD, and cause fistulae as well. Have you been evaluated for all of these?

We're here for you.
 
Hi David. Thanks for your quick response.

All of the things in your first question were done to me. Colonoscopy, biopsy and blood work. All showed Colitis. Indeterminate was never discussed. That was the diagnosis I was given (this was (1/12), and I guess officially that hasn't changed. But what has thrown the Colitis diagnosis into question is the fact that I have a fistula, which my doctors tell me is almost exclusively a Crohn's problem.

My surgeon always uses the term 'Crohn's disease' when he addresses me (which is nerve racking!). The two GIs that I have seen use the term 'Ulcerative Colitis'. I've asked all of them about the discrepancy and they tell me that they cannot confirm Colitis or Crohn's. Although they have decided on terms that they like to use. My stepmom (she's a nurse, and I ask her for alot of advice) said the same thing you said in your first question. She was just about screaming! She said if everything in the colonoscopy/labwork decisively shows Ulcerative Colitis, then that's what I have. Needless to say I'm very confused over all of this.

2) I have been tested for everything you mentioned many times, except for TB. I was tested for that only once and it was 15 months ago, but that was after I began having symptoms. I have a TB test coming up at work, but I doubt that I have it. I would also be low risk for all of the diseases that you mentioned. I've also tested negative once for Lyme disease. (I think that's it!).

I've wondered as well if i could have something that is causing IBD rather than the other way around. My doctors mostly haven't been too helpful. It seems that they aren't particularly good at or willing to think outside of the box, which I think I need.

Thank You again for your response!
 

David

Co-Founder
Location
Naples, Florida
I'm glad they tested for that stuff, it sounds like they're thorough which is a good sign :)

Have they done any tests to see if you have any disease in your small intestine?

Have they done a CT Scan or MRI to see if they can evaluate whether you do have a fistula and where it tracks to if so?
 
This almost sounds like a neurologic issue. I'm glad you are going to have the Doppler done and ultrasound. I'm surprised no doctor has done a pelvic CT scan.

Of the four urologists, I am assuming they have all ruled out a prostate issue?
 
yeah I get a pain but its miore ojn my right side a cramps up aswell I notice that if i eat something I shouldn't have it gets worse.

But yeah takes a while for me to get a erection some days but I think its more to do with fatigue as when I feel good and have a good day I can get an erection easy.

nut yeah it stings when i pee some times and i get the sharp pains in my oenis dunno what it is
 
Location
...
Could it by chance be low iron? I have been having the same problems recently and I am only 18. Some days I can't get an erection no matter what, sorry if TMI, but a year ago I would be able to orgasm 8 times a day no problem. Got a blood test and I have very low iron - almost transfusion low. Severe daily rectal pain has also been having its effects.
 
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