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Crohn’s Behind Closed Doors: It Gets Ugly, It Can Make You Feel Ugly

Why IBD made me feel ugly and what I did about it.

Crohn’s disease made me feel ugly

It destroyed my self-esteem

It caused me to isolate myself

One day I decided I couldn’t keep letting it do this to me. I sought to take the power it had over me back into my own hands

Inflammatory bowel disease is nasty when it’s at it’s worst so it’s no big surprise that a large number of patients don’t want to talk about the things that they are going through because they can be humiliating. I struggled with feeling ashamed all throughout my childhood and early adulthood and worked relentlessly to isolate myself so I could hide what was happening to my body. 

In reality IBD (Crohn’s disease and ulcerative colitis) can be vicious. It can cause gruesome and embarrassing things to happen to a person and then that person has to work out how to cope with it. 

Some of the Worst Things Crohn's Disease Can Do to A Person

I worked relentlessly to isolate myself so I could hide what was happening to my body

Think about having a tunnel from your rectum to your vagina so that when you pee there is fecal matter being passed out of the vagina. How do you think it would feel for a woman in a relationship to be intimate with their partner when they have feces coming out of their vagina? This tunnel from the vagina to the rectum that 

Crohn’s disease caused is called a fistula and nothing about them are pleasant. They are painful and can be difficult to treat; often requiring surgical procedures to insert drains and help the fistula close. That alone is enough but the way they mess with your mental health can sometimes feel even more challenging.

Think about what it must be like for a child who has large, painful wounds that are red, swollen, and leaking pus in the perianal area. He has to go to school yet can hardly walk because the level of pain is so severe. This child has to sit out in gym class and gets teased for the way he walks. How does he explain this to his peers? He can’t;  he just makes up stories or tell jokes to shift the focus. It’s exhausting.

Imagine the quality of life for a person going to the bathroom over 20 times a day. Every time they see red water in the toilet because of blood loss. This happens day after day, time after time because they haven’t found a treatment they respond to so the inflammation in this persons digestive tract is out of control. 

Imagine having a narrowing near your rectum and having to use sex toys to dilate it open every night, or imagine being a kid who wont go to sleepovers because they’re worried about having accidents. 

These are just some of the more embarrassing and gruesome things a patient with Crohn’s disease or ulcerative colitis may experience. Inflammatory Bowel Disease can cause a person to develop a very negative opinion about themselves. It’s not uncommon for a patient’s body-image to suffer because of it. 

All this to say that Crohn’s disease has absolutely caused me to feel ugly at times. To be honest, it used to cause me to hate myself. I felt gross, defective, undesirable, and so many other negative feelings. I listed things about having Crohn’s disease which made made me feel that way below. 

Reasons Crohn's Disease Made Me Feel Ugly.

illustration of person wearing paper bag over head
  • My whole entire body breaking out in acne from steroids and having to face people day-to-day who had no idea that I was suffering the side-effects of medications because I was sick.
  • Being extremely underweight and walking around with my clothes hanging on me like a hanger. Someone told me they could use my legs as matches and start a fire. I've had girls accuse me of throwing up my food.
  • Sitting on the toilet crapping my brains out.
  • Not showering for weeks at a time in the hospital.
  • Having to have someone clean me in the hospital after having accidents because my body was so deconditioned and weak. I couldn't do it by myself.
  • When I have driven home and had an accident in my car. RIP to my Jeep Wrangler. I'm sorry for what I did to your driver's seat.
  • When I had an ostomy and it burst open and I spilled shit all over myself. More than once or twice.
  • When I have dark circles around my eyes, old make-up all over my face, and my hair is a wreck because I have been confined to my house and just can't do much.
  • Rushing into a public bathroom stall because I've had an accident while other people are in there. And they laugh. Oh college! It was the best of times, it was the worst of times.
  • When I would gain a lot of weight after being malnourished but it was fat and no muscle. I was a fat skinny person.
  • When I have had to throw up in public places. It happens more frequently than you'd expect.
  • When my hair has fallen out in clumps from prolonged malnutrition, leaving it extremely sparse.
  • When a nurse has to empty a catheter, an NG tube container, the hat in the toilet, take a sample of something, measure my vomit, or measure the output from my ostomy.
  • Trying on bikinis before a vacation when I was so underweight that the smallest size was baggy and hanging off my butt. You could see my tailbone. Then taking a bath and the pain it caused just to sit down in the tub because my bones stuck out so much.
  • When I am released from the hospital and I have to explain to people that the bruises all over my body are from IV’s, blood draws, and twice daily heparin shots I have been receiving daily for the past 2 months. No I'm not a victim of domestic violence or a drug user.
  • When I have suffered the embarrassment of having an accident while sleeping next to someone else.
  • When I have woken up with my sheets soaked and my clothes soaked and it looks like someone threw a bucket of water in my bed but really I was sweating out the 103 degree fever I have.
  • When I can’t walk because my joints hurt so bad.
  • When I lose my dignity going through tests that prod and probe parts of my body I don't want people touching or seeing.

That was just a little that I could come up with off the top of my head and I’m only just scratching the surface. 

IBD Can Be Ugly but YOU are Not!

It’s not your fault.

Everything I mentioned above has made me feel humiliated. I’ve felt ugly, undesirable, and not worthy of good things. I used to have a very negative internal dialogue about myself going on all the time. My disease made me hate myself while I was working hard to hide it from everyone. It caused me to become depressed. 

It's Not Your Fault!

It’s not your fault. 

That sentence is a good place to start. You are sick and that is really difficult to live with. No matter what anyone tells you, nothing you did caused this. 

It can be really difficult but try not to let your disease make you feel ugly because you aren’t! You are not a disease; the disease is a disease. You and it are two separate things. The thing that helped me most was talking about it with others because it eased the burden of living with all of this alone. I found it most helpful to talk to other people who have IBD because they can relate to a lot of the things I was going through. It was nice to hear that I wasn’t the only one who experienced these things or felt the way I did. It also helps to find a therapist you can talk to. There are even GI Psychologists which is great but unfortunately right now there isn’t enough of them out there so not many people have access to that kind of a specialist. 

Don’t carry all this weight by yourself. Let others help you and remember that you are not ugly, you are not gross, and you are worthy of good things. IBD can be ugly but YOU are not! 

Sara

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