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Intros and frustrations

Hello everyone,

My name is Jon and I have been diagnosed with Crohn's disease for just over 4 years. It seems like not too long ago. I first found out after experiencing black-outs while going to the restroom. From there I went to the ER as I was experiencing blood while going to the restroom. After a quick battery of tests the Dr. believed Crohn's was a probability.

I was referred to a specialist, my current GI. After more blood work and a colonoscopy, I was diagnosed.

At first I could not believe it. I was in my mid-20s and very healthy most of my life. I did not know how to feel, I also did not really understand the depth of it all.

Through the years my condition has been mostly stable so far, no surgery yet. I take Humira bi-monthly, since I have been diagnosed. I have learned alot about the way my body reacts to different foods, I mostly maintain a vegetarian diet with no dairy. I take B-12, D3, and probiotic supplements.

Last month I was on vacation and had to be hospitalized with c-dif. The hardest part of all of this is feeling like a burden to the people I have relationships with. I have far more fatigue and back/joint pain now than when I was diagnosed, at times it feels like they are tired of hearing the same things.

Fortunately I have a job that allows me to work from home, it also does not require much physical work. For some reason it doesnt always feel like enough. I struggle with depression and anxiety and quite a bit of that stems from Crohn's. Its difficult for me to feel like I have options because I need to make sure I have coverage for medical needs and works well with my ups and downs, even if that means I am doing work I don't enjoy.

I'm 6'3" and currently weigh 144lbs. I cried last time I was on the scale because I had dropped 10lbs since I last checked. I have a hard time eating, or flat out forget to eat just because I dont feel hungry, in general I dont enjoy eating foods as much as I used to.

I was inspired to reach out for a support group(here I am!), i'm not sure what is out here where I live, im trying to find a local group, but this seemed like a good solution as well.

Phew, thats alot I know. I'm not one that will usually put it all out there like this. I feel like there will be many here that empathize with much of my experiences.

Thanks for listening!
 
Jon,

Hang in there! CD is pretty unpredictable in every aspect and is one of the worst parts of the disease. I too have depression and anxiety issues and it is leading me to become a hypochondriac, which helps nothing. It is a vicious circle (I'm convinced anxiety has something to do with CD). The good news is they are making a lot of progress with this disease. Tell your Dr. everything, hopefully they can tweak something. If you are not completely satisfied go get a second opinion. This is a great forum for any and all questions. I hope you feel better soon.
 
Hey Jon! Glad you found the forum.

I don't know what part of Utah you are from, but there is a support group sponsored by the CCFA that meets in Salt Lake City.

I have not attended it for a long time because of the drive and the fact that this forum does a lot to fill that need for me, but I thought you might like to be aware of that group.

Hang in there. There is support to be found.
Thanks for the response Doug (and everyone else)

Yeah, im out in Eagle Mountain but likely moving back to Salt Lake soon. I will definitely look into it. I have been with the same GI since I have been diagnosed, he seems like a great doc. Curious about your experience with a UT GI. Can discuss in PM if you are interested.
 
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