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Sexual Side Effects...help!!!

Hello All,
This is pretty personal, but I don't know where else to turn. I was diagnosed in 2004 and been on Methotrexate, Mesalamine, Remicade, Imuran, etc. without the side effects I'm experiencing now. I'm now on 75 mg daily of Mercaptopurine (6-mp). I've been on it for about a year-and-a-half.
Without getting too graphic, I have extreme hypersensitivity of my sexual parts - so much so that I don't even want to be touched.
Of course, sites do not list this on their pages and I'm sure it's rare. Does anyone else experience this? It's not conducive to dating:sign0085:
Thanks.
-L
 

Kev

Senior Member
Hmmm, well, early in my disease I had something similar, and all efforts to find anyone else with my particular symptoms at the time, regardless of gender, was a total waste of time.

I've heard, but have never been able to confirm/ascertain, that it can be caused by excess blood in the genital area (due to the disease). I believe women can sometimes have a similar/temporary situation during or pre menses. My issue eventually went away, but it was a real nuisance at the time. Like, with everything else that was going on thanks to crohns, "I" didn't need that extra hassle in my life. Wish I could be of help.
 

Kev

Senior Member
You know, Crohns or not, women are paranoid about passing gas. I don't know who is behind all these societal rules that are imposed on women, but my advice would be to quit worrying about the 'old boys club' (fact of the matter is, if you aren't a member, regardless of your gender, you ARE excluded; and if you are a member, they don't care what gender you are) AND go after whoever imposed on these restrictions on you. But I digress...

Gas aside for the moment, I understand the 'bloating' thing. Self image is important to the interest/desire for sex. Maybe it's just a quirk of mine, but speaking as a male, what bothers me the most about intimacy (or the potential prospect thereof) is the sight of my surgical scars. I've got plenty of old war wounds (barfights, brawls, etc..) AND those I'm proud of, but the scars from my operations? That's a totally different story. And I can't, for the life of me, picture myself EVER having sex if I wind up having a colostomy due to cancer. One of lifes little 'gotchas'. I end up with crohns, find this site, thru this site I find LDN, LDN stops my crohns in it's tracks; but I still may wind up with a little bag to pack my shit in (pardon my french) because one of the drugs that I took years ago MAY make that occur. OK, gone on way too long. Just wanted you to know that you aren't alone; issues regarding sex AND crohns know no gender boundaries and there are plenty of folks on here who've contemplated or faced it all somehow, OK?
 
This is such a glamourous disease!! And alot of us have to just about beg a Dr to diagnose us!

Talk to the nurse at your Drs office. Even if its not listed as a side affects- chances are they have talked to a patient or two who have the same trouble.

I hopr it all sorts itself out for you!
 
Thank you Kev and Tots! At some point, I'll figure it out...ugh. I totally identify with your frustration Kev. I love it when MDs tell me "this drug has been around since the 50s (or insert decade) - good drug." I'm sorry? Good drug? Yeah, but what will it do to me in 30 years?
Anyway...have a good one.:ytongue:
 

Kev

Senior Member
Well, not to make too light of your valid concern about the long term effects of the drugs we take, but in battling this disease, sometimes you have to focus on the just here and now. Hey, I don't know what years of taking low dose Naltrexone will do to me, but right now it lets me live. And, at this point in time, that is vital. Let me tell you a little (okay, reality check, long winded) story. My Dad's father died at 61. Cancer. It struck my Dad hard. Real hard. He spent the rest of his life from that point on fixated on cancer, and his dying from it. He read the obits every day.. seriously. I don't know how many possible chances for fun and enjoyment of life he passed on because of this fixation. Now, my Mom, a totally different story. When I was a child, Dr's told us she only had months to live. Well, she didn't listen, and she didn't focus on it. She had a firm belief that she'd worry about it when the time came. Many times it came damned close. Dad, on the other hand, aside from his fixation, was robust, healthy, virile even.
We all knew that Dad would outlive Mom, she had too many health issues, and was very sick and weak as far back as anyone could remember (I vaguely recall her being ok when I was about 3 or so).. But, she lived it up, and always thought there would always be a tomorrow. Anyway, 40+ years AFTER he fixated on it, cancer took my Dad. Fast. Whittled him down to a corpse in 6 months. My Mom. All alone, despite everyone trying to get her to live with them, she carried on for another decade. Solo.
My point? No one is guarranteed a tomorrow. If the docs little magic pill helps through the crohns, take it. If there are side effects, deal with them if and when they arise, OK?
 
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