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08-01-2015, 02:32 AM   #1
n2calkin
 
Join Date: Aug 2015
J-pouch removal and gay sex

Normally I can find what I'm looking for online or with my doctor, but I didn't know the Google-appropriate way to search this question and I don't know that my doctor will have the information I'm looking for. I've had UC/Crohn's (they still aren't 100% sure, I don't think but probably Crohn's) for five years, diagnosed when I was 17. So not much in the way of a sex life. Between all of the surgeries, my J-pouch, strictures, fistulas and infections throughout the course of the illness, anal sex of any kind has been off the table, at least from my side.
Anyway, my most recent infection has led my doctor's to decide that the J-pouch has been compromised and if I keep it I'll just get more infections and fistulas, and they are almost certainly correct. The way my surgeon described it is that they would leave my existing ileostomy as is and literally just go in and take off the end, starting from the rectum and removing the effected area. And then they wouldn't reattach the remaining tract back to the anus, they could just close it. I think my doctor described it as a blind anus, but I don't think that's an official term.
I've been putting this off for sometime because I've been of the mindset that I'd like to reverse this if at all possible and even with the presumed advancements of future medicine, I wanted to keep as close to the finish line as I could. So this reversal makes me feel like I'm another step back, but as I left, I actually considered that there might be a silver lining to this. Though my doctor said that he wanted to close the anal opening, it seemed to only be because of potential drainage and that he would leave it open at my request. I assume that without any digestive system attached to it, the fistulas (and by association the setons) would go away, as would my existing stricture. Given that, it would just be a disease free opening that leads nowhere.
Assuming I'm not wrong (and I probably am), it might open up the possibility for me to recieve. I've never been especially inclined that way, but I've also been largely aware that that decision has not been mine to make. I don't know what the name of the surgery or resulting anatomy would be to adequately search people's experiences, but if anyone knows anyone who has had what I'm scheduled for, your insights would be appreciated. Also, if I've left out important details, just ask and I'll fill it in. I'm not shy, there's just quite a volume of medical history to summarize and I don't know what's relevant or not.
08-01-2015, 04:36 PM   #2
Caitlin84
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Location: Milwaukie, Oregon

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As awkward as it may be, I would ask you doctor. It's actually a fascinating question (I'm sure its not so fascinating to you,having to live it). If you do ask/find an answer, let us know.

Good luck!
08-05-2015, 06:44 PM   #3
nogutsnoglory
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Welcome to the forum! I'm sorry that you have been put in the position to not be able to freely enjoy your life, to suffer and wrestle with life questions like this.

I agree with Caitlin84 that you need to be open with your surgeon and let them know why it's important to attempt to preserve this for you as a gay man. They may not have the slightest clue if you don't expressly say so.

As for whether an abscess or fistula would occur if it's not connected to the digestive system. I'm not sure, I'd be interested to know the answer myself. I'm thinking it would be much less likely.

There is a blog of a gay guy who has a j-pouch with lots of info in our resources section. http://gaydigest.wordpress.com/
08-29-2015, 05:44 AM   #4
n2calkin
 
Join Date: Aug 2015
Admittedly I didn't bring it up with my surgeon. My surgery is in a few days. I guess we'll find out...
08-30-2015, 07:25 AM   #5
nogutsnoglory
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I think you gotta bring it up. It's a life altering decision and they are going to just remove it because they will think why keep it unless you explain. I know it's awkward but you don't want to regret it.
03-23-2016, 08:58 AM   #6
Tommy21bn
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Hi, how did your surgery go? Removing my j-pouch was the best thing I ever did. End ileostomies are far easier to manage.
If i were to have a choice I would have the whole lot out. Anything could happen to the rectum and I remember mine lost a lot of nasty smelling fluid which required me to wear a pad. All that for the occasional bit of anal sex and that's assuming the nerves in the area haven't been damaged. As my surgeon used to say 'Better out than in'.
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