Crohn's Disease Forum » Support Forum » Gay, Lesbian, Bisexual & Transgender » My story on Crohn's and dating life

07-19-2013, 07:08 PM   #1
Siarl Bychan
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My story on Crohn's and dating life

I do have a partner of going on five years now. At the time prior to my diagnosis I used to go dancing every weekend. Music was a big favorite of mine and so was dancing. Well, when I was diagnosed and after surgery I stopped going out immediately. I began attending the dance club after a couple of years but it wasn't the same. My stomach would bloat big time and I wasn't used to that. My self image took a dive. I never was one to "hook-up" but after the Dx I felt very self conscious about my body. Sex was out of the question for me. I never felt clean no matter what. I knew that part of it was just me but I never could get past that. I've had a few dates with people now and then but it was always platonic. My stomach used to talk really really really, no...really loud! It sounded like a Congressional Session was taking place. It would happen at the most inconvenient moments. At the check-out line, in court where it's dead silent (my job involved observing court proceedings for the DA' Office), at the movie theater, etc. Lord. I would try to bend over and muffle it with my arms but was bound and determined to be heard. The work place is not the best place to be understood about Crohn's either. Supervisors at some work locales would not understand that going to the bathroom was no 2 second experience. One supervisor told me that a bathroom break should take no more that 5 minutes. I let her know exactly what goes on in the bathroom with Crohn's. She didn't like that and probably needed therapy afterwards. Needless to say, I don't work there any longer.

With my partner, he knows I have Crohn's and he knows it has something to do with the stomach and intestines. But he still, like most people, doesn't understand that it has nothing to do with what I just ate. Sex is few moments and far between. I still don't like to have sex. When there are days that I have gone to the bathroom at least six, seven, or eight times during the day, there's just no way I'm going to feel like having sex much less anything else. Right now I'm not on any meds for Crohn's for four years now. I just watch what I eat and I don't eat beef. If my system is upset or bloating then I drop back to what I guess some people refer to as the BRAT diet. White meat chicken broiled is always safe for me.

From what I understand, my Crohn's is atypical which is why I'm not on a restricted diet. The diseased portion of my intestine was directly after the stomach exit and after where the enzymes enter the intestines from I think the pancreas or liver. Not sure which one that is.

How long have you been Dx'd with Crohn's or IBD?
07-19-2013, 07:43 PM   #2
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Thanks for sharing insight into how this illness has affected your life.

Even with a partner who sees what you go through on a daily basis, its hard for someone to truly "get it" when they aren't in your shoes. Do you guys live together? I feel like living with someone with chronic illness and seeing the constant ups and downs is a better way to see how hard it can be. Is your partner at least understanding when you aren't in the mood for sex or is it taking a toll on your relationship?

I can relate to self image issues mainly because I'm so skinny and have some surgical scars and now a catheter in my rectum due to a perirectal abscess. Can you say ouch? I can't even conceive of dating, never mind being intimate. I'd love to find a boyfriend and ultimately a husband and start a family but right now id like to be able to leave my house and not be so terribly weak and in pain I have had Crohn's for about 6 years now but the last 2 years have been the worst and really miserable.

Why do you choose not to be on meds? Do you see your GI regularly and keep on top of your condition by colonoscopy or imaging?
07-19-2013, 08:23 PM   #3
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Join Date: Aug 2012
Location: Toronto, Canada
Siarl, I am having the same thoughts as nogutsnoglory. Have you seen a doctor lately? You may be able to get an improved quality of life with proper medication.
07-19-2013, 08:45 PM   #4
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When I first was diagnosed... I guess the doctor was trying to soften the blow.. I was informed that although it was an incurable condition (I didn't know the first thing about the disease... so my first question was.. how do 'we' cure it).. it was treatable and that it wasn't a death sentence. Funny how some things just stick in your head. Anyway, I know people have died from it... not trying to make light of that.. but it isn't the 'killer' the way.. oh, say.. pancreatic cancer is. (that got my Dad, and for a while they thought I had it too)... Good thing, because it took me a while to get my head on straight. I think.. initially.. I adopted a defeatist approach because the 'experts' said it was incurable. I was in a funk.. not a depression.. too busy coping with the ups/downs to be depressed... more like.. I had no spark.. no zest.. Very hard to put it into words.

Then, I got mad. I got mad at me for being like that... and I got mad at the disease. It spurred me on to fight.. which in the end was my salvation. I got my disease totally under control. But, guess what? I really didn't resume living. I considered myself just a collection of damaged goods... wonky health, medical history, all this drama and trauma.. surgical scars, complications.. side effects from the drugs I had been on.. the list of issues I had with me... low self esteem.. all I saw was the negative side of me. And, I.. I won't use the word 'lived'.. I existed that way for some time. Just recently stumbled my way out of it.. started living again.. doing 'fun' things.. meeting people, dating.. getting out of my self imposed.. exile.

I hate my surgical scars... reminds me of my disease.. of some very dark times in my life. I am infamous for the ... odors.. that emanate from my diseased, scarred, and surgically shortened GI tract. I recently had to have my teeth surgically removed because the pred I had been on for so long took an irreversible toll on them. And, hell, I closing on 60 faster than Superman can fly. What person in their right mind would try to establish a relationship with me? Well, I've never been in my right mind.. but the real insanity that I suffered from was... I 'knew' that IBD might not kill me right away like cancer did my Dad, BUT... IBD can end your life if you let it. I got my disease in check late in 2007, but it took me until 2013 to get my life back... or at least enough of what I could get to call it a life. Up until I made a resolution late last year... then acted on it.. I was just a victim to IBD. Today, I'm a survivor. And, it was a choice. Just wish I'd made it sooner.

Regardless of gender, orientation, age, race.. you name it.. folks have been plagued by self image issues... body dismorphia.. various and sundry. Relationships don't have to be sexual to be intimate (or vice versa, which proves the theory).. People can't be with you unless/until you let them in. I'm not ssecond guessing your decisions, or passing any judgement on them. We all do this.. to some extent or other... but do we stop and put it into perspective? If someone you deeply loved got ill.. would you stop loving them? If they lost a limb... would you consider them hideously disfigured? A man who has a testicle removed, or a woman a breast.. are they suddenly less of a person? I had the great good fortune to have a grandfather who lost an arm in a mining accident, and an uncle who lost a leg in the war... a cousin who lost an eye.. yet with that the basis for the way I was raised, what I was used to.. despite the fact that my body is torn up with 'war' wounds I'm proud of... my surgical scars still bothered the life out of me. So, it is easy to say (tho not so easy to adequately express/convey in writing), not so easy to do. I don't have any advice to offer, no solutions to spell out.. just more of me trying to say... you aren't alone... been there/done that.. but I found a way forward for me... AND if I can.. anyone can. Just need a ..starting point.. and a destination in mind.

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
07-20-2013, 05:58 PM   #5
Siarl Bychan
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Well. I am so sorry to hear that you all are having such pain with your IBD. I may have mentioned it before but I will say it again, I actually feel lucky. I was in my mid thirties I think when I first began having stomach problems. It began slowly with cramps a few times during the day. Then is escalated to all day, every hour and would only subside at night when I didn't have anything to eat. Then one day, I felt good enough to go for a stroll thought the city ( I lived in San Francisco). I ate a banana before I left. About several blocks away I began to suddenly feel like I was going to throw up. I couldn't understand what was happening because I didn't feel sick which is usually what I associate with throwing up. I was in a panic because there was no public restroom or anywhere to go so I finally made it home and I fought it until many hours later the urge to throw up subsided and I fell asleep from exhaustion. I went through this for a year and a half. The reason I went through that story is emphasize why I feel lucky. When I finally found a doctor that actually began to take me seriously because I had reached the stage where no food was staying down except candy bars, toast, and peanut butter and jelly sandwiches. He immediately made an appt for an upper GI.

After the procedure was over and I was barely awake from the anesthesia, I saw the doctor looking down at me and he said that they found some diseased portion of the intestine and biopsied for Crohn's. He said that he advised that the diseased portion was too far gone and could not be repaired or healed. I said okay. He said that tomorrow morning would be the only day the surgeon could perform. There was no hesitation for me. I said let's do it. I was relieved because for so very long people had no answers. Now I knew what it was. I have a background in medicine so my experience and outlook might be alittle different than those who all of a sudden had this dx thrown in their lap with no preparation. I knew what 'bags' were and was afraid of ending up with one but it was better than having to not eat for so long. By that point I had lost 40-50 lbs. I weighed 140 lbs and was 6 feet tall. I was very skinny. I had never really gained weight since I was a kid.

I had the surgery. The doctor and the surgeon were the best people that I could have had as a team. They prepared me afterwards with information, resources etc. The let me know that due to the placement of the disease in my intestines that I would not have to be on a diet but to just watch my diet, plenty of fluids etc. If something did not agree with me then don't eat it. I told him that I hated meat since I was a kid. The doc told me that it was probably my body talking to me.

I never felt like life was over or that I was ruined. My stitches from below my sternum to below my navel, for me, was a trophy, a war wound, a souvenir of a battle fought and won. Did I always feel 100 percent well? No. But that's life.

Well. I've rattle on enough for now. I just want people who have this disease to not feel that life is over. It's one footstep in front of the other. When there are moments that you are well. Be glad. This has taught me to not take life for granted. Not one moment. You all know and feel something that most people around you never even thing about. When I'm on the toilet, I literally thank God or the universe or whomever is responsible that I can take a dump! People around us don't realize how lucky they are. If a wound opens up on their leg, they don't even blink. They just take it for granted that it will go away. Well, sometimes if we get a sore, we worry that it won't scab over or begin to heal. We should be learning to take life and love it, how ever much we can. Some days will be good and some days will be just okay. When I'm having cramps, I just deal with it. When I'm in public I hide it somewhat. But when I get home, I take off the mask and lay down or what ever seems to work. One day at a time.

I've gotta go. But I want to answer the meds thing. It's not something I'm denying myself of. I'm not taking meds because I don't need them yet. I have bloating and gas sometimes but no cramps or other symptoms at this time. It's nothing that bothers me or I would be on meds. My BM's are regular for the most part. I usually have constipation rather than the normal loos stools of others with IBD. I think that has to do with I don't drink enough fluids. I've never really had a love affair with water.

Some people call me a Pollyanna. I don't care if they do. I believe the world is what we make it. I may sound like I am not in touch with reality or what other people are going through. But I do realize what others are going through. Just don't give up.

Later. Chin up folks.


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