Our Stories: The Discovery....

Hi Everyone.

So in the hopes of getting to know some of you I thought I'd kick off a new thread for those who are interested in reading/sharing. We are all at different stages / severity of illness, but maybe it'll be a nice icebreaker? OK...

For me it's early 2007. Previously I'd had one serious relationship that didn't work out, and then a couple non serious flings amid non-committed hookups. I was in the military and quite focused on my career. I had a great peer group and circle of friends, and at the time that was good enough for me. I remember being uncomfortable (in my stomach) initially. But it wasn't really in my stomach. It was sort of like I had eaten something that was bad. It was making my guts hurt sometimes. But it was weird. It wasn't like eating spicy food, or having indigestion. It was just wrong. At that time I had no reference for the pain cramps caused. Little did I know this was the beginning.

My Crohn's officially began at the end of February, 2007. The symptoms had continued to progress throughout the two months. From just having cramps, then sore skin around my sphincter, then not feeling good at all, and finally developing an actual fistula.

Now I'll admit that when it first started with the cramps it didn't really slow me down at all, and I didn't really know much was wrong. initially it felt a bit like gut rot. (ie: have been drinking too much coffee all day or too much liquor at night). When My "hoop" started to hurt I had actually been with someone and figured I had just been too vigorous. But when the fistula surfaced it was almost a panic.

I went to the MIR to see my Doctor immediately. 1) because it was so painful, but 2) I was so scared I had caught some horrible std or worse THE horrible STD (the terrible HIV). I have always practiced safe sex but I was so scared I was that case where it broke or leaked. And after she examined me is when I heard the words that clinched my fate.

"I'd like you to go see the Gastroentrologist. I think this is in his specialty..."

And sure enough the diagnosis was in fact Crohn's Disease....

I was diagnosed with crohn's before I officially came out as gay. I knew I was different from a young age (maybe 5) but didn't realize what the difference was till age 12. I only accepted myself in college but before that I dated girls in the hopes that I could be straight.

Crohn's has definitely impacted me in terms of my sexual identity. I think the stress of accepting my identity and coming out could not have been good for an already flaring and poor health but that gradual ease with the issue over time probably made things easier to manage on the disease front.

My first boyfriend was accepting of my illness, it was mostly a non-issue with the exception of when I would have a lot of mucus and blood and that grossed him out. I was on prednisone when I was with him and went from skinny to moon face bloated acne guy. Looking back at the pictures I feel disgusting but thankfully he never brought it up as an issue.

Dating after him I was in better health and crohn's was less of an issue. It resurfaced again with my last boyfriend but he had IBS and was understanding of my bad days and I for his. I dated another guy after him who was amazingly accepting of my scars and would accept my ostomy currently but alas I didn't feel the chemistry.

My search for Mr. Right continues and all of my surgeries, ostomy, meds and fatigue complicate my ability to go out and meet guys and of course the potential for rejection over my illness scares me.

That's my story in a low fiber soft nut shell.

I only got diagnosed with Crohn's in July of this year so I'm a newbie, lol... and so far I think I'm coping okay. The most annoying thing for me is that I can't drink tea anymore, and being British this is the Worst. Possible. Thing. Tea was pretty much what kept me alive when I was having The Flare to End All Flares that led to my diagnosis. No food, just constant tea, tea, tea. And now I know that caffeine and milk set me off so argh, no tea for me!

I'm currently single but I will happily date men or women. In the past I've mostly dated men long-term because women are just waaay too emotional and everything with them seems to fall apart far too quickly, and they seem to be more weirded out by me having Crohn's than men do. Not sure why but long story short, a girl I really liked said I was 'needy' because every time we went out we had to go somewhere with food I knew I could eat (what's so bad about TGI Fridays?) and I was, and I quote 'constantly' looking for a toilet.

Totally not true, but if she or anyone else can't be arsed to deal with what I consider fairly minor issues then I'm not interested in them. Take me, and my disease, as we come. We come as a package deal. Can't have one without the other!

What else about me... Oh yes, I'm terribly vain and the steroid-induced acne was hell. I'm still trying to get rid of the last of it and thank every god you can think of for foundation. But having a few spots is a tiny price to pay for being healthy, I think.

I refuse to let this illness get the better of me. I'm stubborn when it comes to my health and Crohn's be damned. Today was a bad day but I still managed to go on two test drives and price up a potential new car for myself, so yeah. Stuff you, Crohns!

I have been diagnosed for just over four years, a terrible 24th birthday gift....

Prior to my diagnosis with Crohn's I was so focused on school, I didn't give much thought to the idea of dating and sex. To the point that I would explain that I was asexual to friends when they would ask why I wasn't seeing anyone.

After my diagnosis, I was too busy fighting for my life to even care about anything other than staying alive.

I ended up having my entire large intestine removed just under two years ago. I had to travel to a hospital four hours from home. I had one friend living in the city, my best friend. She was there when I was in surgery, was the first face I saw when I woke up and visited me every day after until I was sent home.

A few months later she was transferred to my home town and we spent a lot of time together. Eventually she made her move and I got confused. I had been happy to define myself as asexual. Now I was faced with a new definition, am I lesbian? Bi sexual ? Pan sexual?

Long story short, I am in a lesbian relationship and have finished trying to define me. I am happy and in love, and that's really all that matters to me. She knows all the difficulties that I have had in my life and the bag doesn't bother her at all.

Hello Everyone,

It is probably about time to introduce myself here. I've been on the forum for a little while, commenting and helping where I can. I was outed at 9 years old by an incident at the pool. I got out to go use the bathroom and stopped at the showers to stare at a beautiful man. My father caught me staring and asked if I liked what I was looking at. Not knowing anything about gay or straight, I answered truthfully that I liked it very much. After years of counseling, I had my first kiss boyfriend at 12. We went steady for 4 years, then he started dating girls and only recently got married. I stayed in touch with him for many years.

I was always very physically fit. I joined the military and graduated ranger training, spending 6 years on active duty. Most of that time I spent alone, not dating or coming out to anyone unless asked directly. After finishing my tour, I went to work for the government in Europe, where I fell off a 3-story building and broke my back in two places.

I was paralyzed from the waist down for about 2 years, spent a lot of time in a wheelchair. After my recovery, I went to work for a stomach and intestinal disorder clinic in Germany. I spent 9 years there as the clinic therapist. This was my first exposure to Crohn's and many other diseases, including cancers. I learned a lot, so feel free to ask me anything, if I don't know the answers, I will try to figure it out with you.

I returned to the USA in 2000, right after the big Y2K scare. So I spent almost 20 years of my life in Europe, single and staying busy with my career. I lived in Portland, Oregon, Chicago, Las Vegas, Miami, Ft. Lauderdale, and a few other places. Mainly working under a contract that put me in different places.

One of my best friends broke up with his long-term partner after 13 years, we became roommates first, then we got married after a few years of living together. Those were the best years of my life. He passed away in November of 2012 from kidney failure. I have not recovered from that, and I doubt I ever will.

I've certainly dated a lot in my life, and dread going back to it. It always seems the great ones are taken, or I'm not interested in those that want to be my boyfriend. So the world turns...

In any case, while working in Florida in 2004, I got a nasty bug that took me months to recover from. Since that time my immune system has been shot, and I get the same symptoms as Crohn's. When my immune system is boosted, I feel fine and have no problems.

Being that I'm versatile, I'm still capable of having a sex life during flare ups. I just wish I had interest in that, LOL. As most of you know, during a flare that is the last thing on my agenda. But it isn't always about us, is it? Sometimes you do things to make your partner happy because you love him/her. Not because you are in the mood.

I have fixed an abscess by bottoming, it certainly got it to budge and drain properly. Yes, it was painful, but at the same time it was an experiment to see if it would work. It did, and after that I flushed it all out. My thinking was, it can't get any worse than having the infection stuck in there. My doctor said it was fine, he doesn't see any issues with anal sex and my condition. His concern is mainly that it is safe, since there are open areas that could expose me to blood pathogens.

Since my guy passed, I have dated a little, but it is hard to do. I loved him so much and I try very hard not to compare other people to him, but you probably know how hard that is since it is barely over a year now.

I'm 53 this year, and thanks to my disease, I look great on the outside. I do watch what I eat, live a modified paleo diet, and get plenty of exercise. At 170 lbs, 5' 10", I'm considered lean and fit... yeah, would be nice to be fit, yes to lean. I don't think I've been processing much of what I eat these days, so I supplement my nutrition with Ensure.

After my partner died, I moved to Honolulu Hawaii for my health. Now that was a great idea. The sun and regular temperatures have been wonderful so far. I was working at the power plant here in Honolulu up until mid-January. I recently had to stop because the disease progression started fusing my bones together. I'm getting my immune globulin infusions this Friday, the first in a couple of years. Now that this has gone to the legs and hips, I'll be stuck in a wheelchair again, probably for a longer period, if not permanently. I'm sure that will put a dent in my dating, but I also feel that somebody will love me for who I am, not worrying about whether or not I can walk. I just don't want to burden anyone with my care. I try to stay confident and positive, and fight to the last breath. I am working on better ways to do my own care, from bath to cooking. So far it's working pretty good. It is tough, but I didn't hear anyone say that life was going to be easy.

So, I've been out and proud for a long time, over 40 years now. I can't stand bullying of any kind, so if you have any of those issues, feel free to talk to me. My days as a therapist are ended, but I still care.

Which do you folks find is worse? The physical issues that this illness brings, or the psychological ones?

I couldn't imagine losing a partner like you did Durwardian. Thanks for sharing your story
Happypanda, sometimes love is there when you aren't looking for it