Crohn's Disease Forum » Support Forum » Gay, Lesbian, Bisexual & Transgender » New here: Needing some fistula support. Just had my 5th fistula repair and 2nd fistula plug placement.


11-22-2013, 06:37 PM   #1
amaiello
 
Join Date: Nov 2013
New here: Needing some fistula support. Just had my 5th fistula repair and 2nd fistula plug placement.

I've been looking for an LGBT Crohns forum FOREVER. Finally somewhere I can talk to other gays about issues…yesss. So a little background about myself. I was diagnosed with UC in 2004/rediagnosed with Crohns last summer. I had my colon removed in 2005 and eventually Jpouch surgery and after that multiple surgeries for recurrent fistulas (flap repair, graciloplasty, plugs, setons, etc) Anyway…I have been on Humira for a little over a year which closed the fistula I've had for about 3 years considerably but I decided to do something less "invasive" and wanted to get it closed up for good with another plug. I feel like my progress from the medicine has been completely erased as I am having more drainage (Which I'm told is normal for right now) than I can handle. I won't know if the plug is still in until my follow up with my surgeon tuesday but I haven't seen anything come out. Anyone have experience with the plug working/not working?
11-22-2013, 08:42 PM   #2
lgpcarter
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Sorry to hear about your fistula troubles. I have them too and they are miserable. Soaking in a sitz bath right now, actually!

Just wanted to say that I know there aren't many people in the forums who have had experience with the plugs, so you might get more responses if you also post in the fistula sub forum.
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Diagnosed in with Crohn's in large and small bowel in 2000.

Seton placement (2) and fistulotomy December 2013. Setons removed July 2014.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Entyvio every 4 weeks, Flagyl and Cipro 500 mg twice a day

Previously: Remicade, Humira, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone, Imuran
11-22-2013, 09:01 PM   #3
nogutsnoglory
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So glad you can join us. I felt the same way, when I searched online for anything related to gay people and crohn's I'd find irrelevant sites that just happened to mention crohn's or gay in separate news articles but nothing in the way of community or support. It's a tad better in the ostomy world because there is an LGBT ostomy organization and a forum but it's not too active. I am really happy crohn's forum gives us a space to discuss our concerns which can be the same as straights but in many cases is unique to an LGBT identity.

I would recommend you check out Gay Digest, it's a blog from a gay guy who has a J-pouch and he talks about how he has coped with UC and his surgeries and it's impact on dating http://gaydigest.wordpress.com he doesn't seem to blog anymore but he does email because I did reach out to him once.

I currently have multiple fistulas that are a result of multiple surgeries and abscesses and have an ileostomy that is hopefully temporary.

I don't know anything about the plugs but someone on the fistula forum may, you can also do a forum specific search for that. Where are you from? Perhaps there is a CCFA support group in your area where you can reach out for more info?

Btw I copied your post to the fistula forum as well so hope you get more support.
11-22-2013, 09:07 PM   #4
amaiello
 
Join Date: Nov 2013
Thanks for your responses! I will also post in the general fistula area as well. I posted in the LGBT section purposely to inquire about issues with sex and fistulas. I have never spoken to another lesbian with a fistula and I have been seeing a girl for the past 6 months now. My fistula WAS controlled by the Humira so it was never something I had to bring up/didn't cause any issues sexually…but now with the constant drainage…I don't want anything to do with sex. Or how to explain it in a way that won't seem so disgusting to her.

I also wanted to let you guys know that I am the Director of Multimedia for Girls With Guts! A non-profit for ladies with IBD or Ostomies.
11-22-2013, 09:16 PM   #5
nogutsnoglory
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Are you suffering from a rectovaginal, anal or vaginal to elsewhere fistula? We have quite a few lesbian and bi women on the forum and they may have experience handling sexuality re: fistula issues.

I can understand not wanting to be intimate when you have abnormal secretions and pains. I am thinking from the perspective of someone with an ostomy and mind you haven't been intimate since ostomy surgery. What I would do is cover the spot of contention so to speak so in your case maybe keep an underwear on and explore other areas of intimacy? Touch can be amazing as can other things and while I know most of us want the full range of sex, it's not always accessible unfortunately. Hopefully you will fully heal and it won't be an issue.

Let us know what exactly you have so we can be more direct and I can tag some queer women who may have good advice.
11-22-2013, 09:30 PM   #6
amaiello
 
Join Date: Nov 2013
I have a low rectovaginal fistula and would love it if you could tag those ladies! I was going through the forum trying to find relevant posts myself but was getting lost going through pages. My surgeon said it should slow down and i am taking immodium right now to preserve my sanity but it isn't helping that much. I am a week out of the plug surgery.
11-22-2013, 10:01 PM   #7
nogutsnoglory
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Tagging hetzbaby, luscious andrea who I believe both had perianal fistulas and are queer women and may be able to give you advice. Can't recall any mentioning vaginal fistulas.

I would say that you can just explain you have an open wound there and so the area is off limits for the time being. If someone likes you for you, they should work around it and support you nonetheless.

There are a number of lesbian or bi women on the forum but I don't recall who specifically referenced fistulas but it doesn't mean they didn't have them. Maybe they can give their advice on how you should approach discussing it with your girlfriend whether they faced your situation or not.

If you want just regular lesbian crohn's users who may not have had crohn's I'll happily tag those who may be able to pitch in with advice.
11-24-2013, 03:01 AM   #8
jlm
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Hi there and welcome to the forum. Sorry but I don't have a lot of insight on the matter. I had fistulas when I was young so didn't have to deal with dating and when I met my current gf I was in full remission. The conversation about me having crohns came and went fairly quickly when she saw my scars on my abdomen. I was healthy for a good two years before I started not feeling well. She's stuck with me now

But seriously, during our relationship I had a fistula that formed at my incision site that took about 6 months to close. It didn't really hinder us in any way. She even cleaned it for me sine it grossed me out for the first little while.

I would have to agree with noguts and just explain you have an open wound if its not painful and you can still be intimate you can sort of direct her to "safe" areas. You don't have to explain in detail exactly what's going on.
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Crohn's Disease Forum » Support Forum » Gay, Lesbian, Bisexual & Transgender » New here: Needing some fistula support. Just had my 5th fistula repair and 2nd fistula plug placement.
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