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05-09-2014, 06:05 PM   #1
theOcean
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Identity and IBD

Have you found that dealing with IBD has changed the way you identify at all? I know we talked about this in another thread about changes regarding sex, but I'm more interested in identity.

I'm queer and my identifying as that didn't change, but I found that dealing with IBD sent me through a lot of body dysphoria, especially during my last hospital stay. Within the eleven days that I was there, I was on IV the whole time and they massively overcompensated and gave me way too much fluid. I ended up swelling up like crazy from it -- I went from being near-skeletal and massively underweight from flare to having so much water weight I had fat rolls on my ankles, and my belly looked like a pregnant woman's. It was terrifying, and took almost a week to get back down to how I was before once they took me off of having a constant saline drip.

I'm pretty androgynous, though I'm comfortable IDing as female. But suddenly going through such massive body changes like that were terrifying. Grappling with my weight loss was hard, too -- I was used to being relatively curvy and enjoyed it, and suddenly I was stick-thin and had to throw out my whole wardrobe because nothing fit anymore. It made me really have to reassess how I wanted to present myself.
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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!
05-09-2014, 06:17 PM   #2
DJW
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Most definitely. I was at my sickest through my teen years. Finished my teens off with an ileostomy. I don't believe I ever properly dealt with it. It's still a challenge but when I'm sick I need to remind myself I'm not 14 any more. People aren't sitting back in judgement.
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Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:
http://www.crohnsandcolitis.ca/site/...tis_Canada.htm

Living in Ontario with no drug benefits?

Trillium Drug Program:
http://www.health.gov.on.ca/en/publi..._trillium.aspx

Dave
05-09-2014, 06:24 PM   #3
nogutsnoglory
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I came out as gay prior to being diagnosed with crohns, I told my mom I'm gay at 12, felt different from as young as 5 but had a lot of internalized homophobia to deal with. It's pretty much when I came to terms with my identity that I got diagnosed so I kind of feel like the two go hand in hand in many ways.

I wouldnt say crohns changed my identity but it definitely changed my ability to pursue living my identity fully. I can never just be a gay man, I'll always have this crohns monster over my shoulder which will present various issues. I can't really date as much or go out and enjoy the process of meeting new friends and potential dates because this disease is challenging. I also will forever need to come out about crohns. The gay community can be pretty superficial at times with a heavy focus on body image and fashion and there isn't anything too sexy or fashionable about diarrhea and an ostomy or being a skeleton due to malnourishment haha.
05-09-2014, 07:57 PM   #4
theOcean
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Yeah, I dealt with something similar too when I was 13 and realized that hey, I wasn't straight. It took a long time before I finally felt comfortable with my sexuality, which was probably only a year ago, now. I went through a lot of labels: bisexual, pansexual, asexual, homoromantic, lesbian, then eventually queer.

I've actually been pretty lucky with my interactions with the gay community. When I started at my college, it turned out there was actually a huge LGBT population, which was surprising. (Especially given that I was there for video game development, which I think strikes most people as straight white dudes.) Somehow all the friends I made just happened to be gay, which was actually pretty nice. It was a huge change from my high school, which was actively homophobic.
05-10-2014, 10:26 AM   #5
nogutsnoglory
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I don't think it's uncommon to try on different labels before feeling comfortable. Not unlike how I tell people about my crohns. I used to tell some people I'm bi, like guys, now I just say gay but it used to be easier to use other labels and not be completely aligned in the gay camp.

Interestingly with crohns I tell people I'm close with that I have crohns disease but others I just say I have a sensitive stomach or stomach issues. For waiters I just say I'm allergic to everything lol.

On a side note theocean are you aware of the lgbt gamer convention http://www.gaymerx.com
05-12-2014, 06:59 PM   #6
theOcean
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Yeah, that was the idea I had when I was younger, too. It was easier to say pansexual than it was to say I was a lesbian. Queer I actually really enjoy for it being an umbrella term.

And haha, yeah, me too. I usually just say I have an illness (because I usually eat with people and have to take pills) but don't specify unless they're interested.

And no, I haven't actually heard of it before! We actually have a community where I live for gay gamers, which is lovely because gaming is really a place where we need safe spaces. There's enough misogyny in that industry as is, let alone homophobia.
05-12-2014, 09:39 PM   #7
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Well I'm glad I'm not the only one who went through that. Of course, I never dealt with being identified or labelled about my sexuality, but I did feel like I was just the girl with the tummy problems, since I had the endometriosis-Crohn's-Colitis package, or just the girl with no neck when I was on pred.
I usually say I have tummy issues. Nosey people tend to stop questionning when you mention anything relating to digestion, in these parts anyways.
But still, it creeps back when I tend to go back into a flareup, since my family all the sudden treats me like a precious thing to worry about. Any of you get really frustrated at that too??
05-12-2014, 10:00 PM   #8
theOcean
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Well I'm glad I'm not the only one who went through that. Of course, I never dealt with being identified or labelled about my sexuality, but I did feel like I was just the girl with the tummy problems, since I had the endometriosis-Crohn's-Colitis package, or just the girl with no neck when I was on pred.
I usually say I have tummy issues. Nosey people tend to stop questionning when you mention anything relating to digestion, in these parts anyways.
But still, it creeps back when I tend to go back into a flareup, since my family all the sudden treats me like a precious thing to worry about. Any of you get really frustrated at that too??
Oh gosh, yeah, I definitely ended up dealing with that. When I was hospitalized on-and-off for a long period of time I actually got so sick of anyone asking me about my health or worrying about me, even though it came from good intentions. It just gets frustrating after awhile, and I don't think people who are healthy really understand or experience that! We are more than just our illnesses.

I find that when I talk about my body, I tend to even refer to my stomach/intestines as its own separate entity. It kind of helps to be able to get that distance from it, especially since I don't want to let Crohn's define my life. It shouldn't.
05-15-2014, 04:42 PM   #9
nogutsnoglory
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I have to say that crohns really has taken away from my identity and that I don't even know who I am because I haven't been able to fully explore life and get a sense of the world because this illness holds me back. I almost feel like a sick malfunctioning robot sometimes who just takes meds and goes to procedure after procedure to try to keep the switchboard running.

I know my friends can't even relate to me and I have lost so many over an inability to maintain relationships or do anything exciting. I'm just sick of explaining why I don't eat or drink things or to explain I'm in too much pain or too weak to leave my house nevermind goto a bar or a movie or whatever.

I wish i could make friends with a bunch of other people my age who had illnesses and find a boyfriend who was either really lazy or couldn't go out much for some reason too but the support groups are always old people.
05-15-2014, 05:08 PM   #10
theOcean
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I can definitely relate -- even once I was finally out of the hospital, starting to do better again, I really struggled with how I felt about my body and how it felt like such a traitor to me, something I had no control over and something I actively had to be scared of. I felt so disconnected from my body.

I also found that if I wasn't able to keep in contact with friends online, I just... stopped keeping in contact with them. Everything else took too much energy to do. I had so many days where laying in bed and watching TV was all I could do. So I get it, I really do.

I've been fortunate enough that my SO is a TV-watching, video game-playing lazybones like me. So even though I'm not active, even though I have a lot of days where my body won't let me do much, that hasn't been problematic for me. And hopefully you can find a boyfriend you can just stay in with and laze around with, too.

That's a shame about the support groups... I know we have our forum, at least, but I know that's not always a replacement for physical, face-to-face interactions. If I was closer I'd happily hang out with you.
05-16-2014, 12:53 PM   #11
nogutsnoglory
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I'd love to hang out with you or any of the awesome people on this forum but you guys are all so far, UK, Canada, or somewhere on the opposite end of the states. It's definitely great to have the online support but of course it can't replace face to face hanging out and chatting.

I totally hear you on feeling your body is a traitor. I always joke that my body hates me, I speak of it as if it's it's own entity that doesn't care about what I think. There is me and then there is my body lol. When I first got my stoma I felt incredibly disconnected from my body, as if some alien put a chip on me that I had no control over. I still don't like the stoma but I am not as distraught over it as I was at first. Stupid crohns, stupid scars!
05-16-2014, 01:03 PM   #12
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Aww I really feel for everything we said here. Bowels suck.
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