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Aggressive Crohn's?

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Crohn's Disease
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Posted 2/22/2012 3:33 AM (GMT 0)
Hi Everyone,

I have been battling crohn's for a while now- since high school. I had a bowel resection 14 months ago where 14 inches of disease was removed. I then had a colonoscopy 10 months ago and my disease had returned. I just had another colonoscopy today because I have been in a lot of pain and my stomach has been distended. I think the results were intense. I have multiple ulcers, new disease throughout my rectum as well as all throughout my small intestines. My colon though was clean. In ten months, doesn't that seem aggressive? My question to anyone out there is am I in denial? What is my life to look like in a few years if this is what happens in 10 months?

I am normally happy and positive, but I feel like maybe I need to face my new reality. I try to let Crohn's be a part of me, and not define me, but I feel like the harder I try to be "normal" and raise my kids, I get kicked down in the middle of a success. I am successful with a beautiful family and a great career. I have lost 120 lbs and have run several half marathons, so I guess my problem is I don't want to be sick. I always thought I am a person living with Crohn's, but with numerous dr visits and bills my husband and I cannot afford, I feel as though I have crohn's and I am trying to live through it. At 31, it makes me hope to live a healthy enough life for my kids. Any advice or thoughts are welcomed. I am currently on Cimzia, welchol, entocort, and lexapro. What scares me is that I am running out of options for meds. My dr just moved me to cimzia once a week. I guess I feel like maybe I need to realize my crohn's is aggressive...I'm not sure. As down as I get, I am lucky to have my family around me with an understanding husband.

Does anyone else feel like you grieve over and over again?

Thanks for listening-
Kgirlie
Posted 2/22/2012 2:40 PM (GMT 0)
Hi Kgirlie,
The problem with all chronic illnesses is learning to live with the uncertainty and grief when things go wrong, and embracing the times when we are healthy. Check out the information on mindfulness, as that may be helpful. It is A LOT easier said than done. I went through a long period of remission, and I was able to move into a space where I thought very little about Crohn's. But it's so much harder not to worry when I'm sick. I get caught up in the "what ifs" and it is never productive for me. The weird thing about Crohn's is that you can get very sick, but still move back to remission and a "normal" life with the right meds.....so you don't have to accept yourself as a "sick" person....keep working for remission. Just because your illness has been aggressive the last 10 months, doesn't mean it will continue to progress that way. I don't have advice on the meds, but try not to give up your hope and expectation for health. I struggle with the same things, so I guess I'm talking to myself as much as you!
Posted 2/22/2012 3:34 PM (GMT 0)
I'm so sorry kgirlie. There is a mourning process, to be sure. I hope that you have some good stress management approaches in your life - if not, I'd suggest you meet with a therapist to develop some methods you can use. I think exercise is great for raising your endorphins, but I know it's hard to do exercise when you're in pain.

{{{{{{HUGS}}}}}
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