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Crohn's Disease Forum » Support Forum » Gay, Lesbian, Bisexual & Transgender » Fistula male testicles / am so Lost & in PAIN


04-01-2014, 01:39 AM   #1
Kurt
 
Join Date: Apr 2014
Fistula male testicles / am so Lost & in PAIN

I am a 47yr gay male with a diagnosis of AIDS for well over 20yrs. (Undetectable) For the past year one of my testicles would swell up be in massive pain, than begin to drain clear mostly fluid. My Dr. prescribed Doxycycline 100mg 2X a day. Sometimes works sometimes not. Dr. 100% tells me no surgery. Does this ring a bell with anyone. I am seeking direction. Any direction. Thank you!
04-01-2014, 01:42 AM   #2
Kurt
 
Join Date: Apr 2014
I am looking for suggestions. In massive pain! 47yr old male with a testicle fistula. Treating with antibiotics sometimes help but not now.
04-01-2014, 01:48 AM   #3
theOcean
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It takes awhile. Unfortunately there's no really... effective way of treating them, but going on biologics like Remicade or Humira can help. Mention that to your GI.
__________________
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
04-01-2014, 01:54 AM   #4
Kurt
 
Join Date: Apr 2014
Cant do most treatments.... 25+ years as a person with AIDS. Currently undetectable.
04-01-2014, 03:11 AM   #5
theOcean
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Oh, shoot, you're right. I'm so sorry. I hope you can find something.
04-01-2014, 07:45 AM   #6
lisakuney
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I'm not familiar with scrotal fistulae. It sounds a lot like a hydrocele, which take a really long time to go away.
04-01-2014, 08:26 AM   #7
ScaredAndConfused
 
Join Date: Dec 2013
Location: Florida
My thought would be to maybe get a second opinion? It sounds like you're rather desperate and it really can't hurt to get someone else's feedback.

As you'll note from my username, I was rather scared when I first started here myself. And I was in a lot of pain, had been for about a year - which is actually where the fear came from. Pain is scary, not being able to control it scarier still. Things turned out well for me in the end (at least in this chapter of my story) and I hope it will for you, too. I just wanted to let you know that you're not alone, we've all been in similarly frightening situations, and we've all made it out the other end. When you find the doctor that works for you, the treatments that work for you, and the support that you need, things get a lot better. It's just a matter of time. Hang in there, and, like I said, check into a second opinion.
04-01-2014, 08:37 AM   #8
nogutsnoglory
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Location: New York

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Welcome! I'm sorry that sounds awful. If your HIV levels are undetectable is it possible you can be on a biologic? I never realized that someone with HIV and crohn's can't take an immunosuppressant but it makes sense.

What sort of options do they give you med wise?
I'm sure this is a real challenge physically and emotionally. I will try to see if I can't find info but AIDS & crohn's and testicular fistulas are both unique problems I haven't seen discussed here before.
05-11-2015, 04:37 PM   #9
nogutsnoglory
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Kurt I'm feeling your pain on this. I know this is a year late but I have a hydrocele now. They have no idea why this is happening and I'm also on doxy but I'm almost done with my course and it's no different. I don't want to have another surgery especially not there! My doxy course is not for this though but hope it helps.
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