The Ugly Side of IBD and Relationships: When it Goes Terribly Wrong
Rewind.
It’s 3:30 in the morning and we’ve been fighting for hours.
I don’t even remember anymore what started this fight but I have no energy to try and figure it out. I try being silent. If I just don’t respond…
but it doesn’t work. Now I am being yelled at for not talking. I can’t win.
This.
This happens every night.
I’m in college and I am living on campus in my own dorm room that has somehow become “our dorm room” though I was never asked if if that was okay.
I don’t want you here.
I don’t want anyone here but I am not brave enough to ask you to go home and to stop staying with me every night because I am sick and I want to be sick by myself. I don’t know how many times I can ask you to leave and go sit in the hallway or walk around while I use the bathroom in my small dorm room
because I don’t want you to hear me. You do it for me but I know you hate it. After the 15th time in a row that I ask you to step outside I know that you’re angry.
I start picking fights in hopes that you will leave angry at me because I rather that than work out in my head how to keep running to the bathroom with someone always here. I just want my room and my bathroom to myself. We fight passionately and we make up even more so. I know our relationship is unhealthy but I am also not brave enough to be alone right now because I don’t want to do this alone and so we go on in circles fighting and making up.
Every night the same – the pain, the trips to the bathroom, the bleeding, the fevers, the medications. The fact that we don’t do anything anymore because I am too sick to go out and hang out with our friends. It wasn’t always this way. We met when I was doing well and so now I feel I was deceiving. We went to concerts (OK maybe I wasn’t doing well. I had my first accident in front of you at that concert), we took road trips and you played the “mouth trumpet” while I sang loud to the radio. We laughed and we hung out with our circle of friends all of the time. I sang and you were the saxophone. Our sexual chemistry was like nothing I had experienced before but soon that too ended. When things were good between us they were really good, but when it was bad it was really bad. These days I beg to stay inside and not even take the elevator 6 floors up to our friends dorm room because between the time it takes me to step in the elevator and arrive at her door I might shit myself. So we stay in.
We always stay in.
I start picking fights in hopes that you will leave angry at me because I rather that than work out in my head how to keep running to the bathroom with someone always here. I just want my room and my bathroom to myself.
Fast forward.
A few months later I lose my job, I stop school, and I move back in with my parents. I feel like a failure and start to hate myself. Who would want to date someone like this? I had always been such a hard worker and didn’t know how to not be in school and not be working. I start feeling like if I can’t go to school and I can’t work right now then what kind of person am I? I pick more fights because I don’t know how to express that my anger is actually because I am sick and this is my life and it has nothing to do with you. My parents don’t have a room for me so I move into my brothers old room with just a futon mattress on the floor. T comes over every day and stays with me at my parents house from time to time. I don’t care anymore that anyone is around when I make my trips to and from the bathroom. I don’t care if you lay next to me while I lay naked, underweight, sweating from my fevers, with mesalamine up my butt.
There is no relationship now because we have both become consumed with my health. We fight about my medications. We fight about how we don’t do anything anymore. We fight about everything. I am too familiar with the feeling of feeling guilty for my sickness ruining other peoples lives. My mom and my sister worry because they hear us fighting all the time. Not exactly fighting but me getting yelled at and then trying to do anything to end the fight. Mostly I cry. You are crazy.
There are other reasons we fight. You have a temper, anxiety,
and anger issues. You are controlling and awful. Crazy and abusive things keep happening…
I said I would never date someone like this. What am I doing? You don’t like what I wear, don’t like if I get any sort of attention, don’t like… much. I have no idea what I am doing in this relationship but I love it and hate it and need it and…
How do you feel sexy when you sleep naked on a towel next to someone with an enema in your butt?
This. This has to be as bad as it gets.
I was wrong.
Fast forward.
I keep a thermometer by the mattress we sleep on and every night it reads between 102-104 degrees. The pain and the blood frighten me and I know this just isn’t right and the medications are not working but what can I do without health insurance? My parents pay for my medications and I know they can’t afford them and I just have to keep crossing my fingers that they work. I make my trips to and from the bathroom until I think that I am safe to sleep and that is when I insert the mesalamine enema. I hate them. They make me feel so unattractive and so gross. I can’t come to terms with not being in school, not working, losing my health insurance, and not being able to do anything and so I am angry all the time. I sit on the mattress, take my temperature, and shiver violently from the fever. You look at me worried.
I sleep naked now not because I’m falling asleep with someone I love and want that closeness with, but because my fevers cause me to sweat so much when I sleep that I wake up drenched and I am tired of waking up with blood and shit in my clothes and having to clean them. My hair wet like I just showered, my clothes soaked, the sheets completely wet. Every night I sleep that way and shiver going between too hot and freezing and hope that I don’t have an accident because I’m using this stupid medicated enema that isn’t working anyway. There is no more sex. There is no more chemistry. I am gross and we have to be gross together and sleep in my sweaty bed while I have this enema in and I run to the bathroom all of the time. And this is our life.
I sleep naked now not because I’m falling asleep with someone I love and want that closeness with, but because my fevers cause me to sweat so much when I sleep that I wake up drenched and I am tired of waking up with blood and shit in my clothes and having to clean them.
This. This has to be as bad as it gets.
I was wrong.
Fast Forward
It is month two in the hospital and I have an ostomy. I am trying to recover from surgery and trying to move forward. I experience complication after complication but I do get out of the hospital for a handful of days. You weren’t even there for my surgery because we fought the night before and I forbid it. Instead I go through it alone. You show up anyway a few hours after my surgery uninvited and I am too drugged and in too much pain to say anything that matters anyway.
You stand by my bed and cry and tell me how worried you were. Again we make up because I am desperate for someone to be by my side through this. I hate that, but you stay with me in the hospital and take care of me and I like having someone there even if they are terrible to me most times. The doctors make me measure the output from my ostomy and so I have to empty it’s contents into this container. I stay at your house and we have sex for the first time with my ostomy bag. I don’t quite know what to do with it. My weight hovers at around 90 pounds and I feel so unattractive but with a lot of reassurance it happens. At least
I can be thankful for the reassurance.
You set up a “bathroom” for me in the basement of your sisters house where your room is. My bathroom was the container I had to measure my output in and a trash bag. I’d walk a few feet from your bed to empty the contents of my ostomy, right there in plain sight. I would measure it and clean up my bag all there in that room and then walk back to your bed. And that was my life. Disgusting, but I was too sick to care.
This. This has to be as bad as it gets.
I was wrong.
Fast forward
A month later I am throwing up non-stop large amounts of green liquid. I am given emergency surgery where they discover I had adhesions strangling my small bowel and caused that to happen. They hook up my J-pouch and I hope things get better. They don’t. I have accident after accident once my J-pouch is hooked up and I become even more depressed. I now sleep on those blue hospital pads wearing a hospital gown and no underwear. It’s easier to get up in the middle of the night and throw away the blue pad on the bed and fall back asleep but I can’t take care of myself alone so you have to help. I am so underweight now and have been in the hospital for months surviving on blood transfusions, TPN, and steroids. My weak body can no longer walk very far on it’s own. I am absolutely
disgusting at this point. I start wearing the adult diapers the hospital provides but they are so big I can’t keep them on my underweight body.
This. This for sure had to be as bad as it gets.
And after awhile, it was.
Rewind
After six months I got out and started getting better. My weight dropped down to 82 pounds and I struggled in the beginning but eventually I stopped having accidents and I started having pain free days. A few months later I had gained some weight and some energy but T and I… we never recovered.
I spend a couple months living in my parents living room because I am too weak to walk up the stairs. My sister welcomes me home with drawings and a big poster board that her and my mom made. T helps my family set up a room for me in the living room. I have a TV and a bed and that is
where we stay. We still fight. T starts hanging out with people without me until I eventually learn there was another girl. A healthy girl and I get it. We still don’t give up and stupidly we move into a new place and a week later I am broken up with and there is that girl and T is moving out. I cry my eyes out all night alone on the floor of our furniture-less apartment because I feel like I never loved anyone more and I know that’s the stupidest thing I ever thought because I’ve never been treated so bad in my life.
Sara
