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Newbie who hates Crohn's!!

moonlove14

moonlove14

Location
Wisconsin
Hi everyone,
I was diagnosed in 2006 with CD when I was 18. It's been a roller coaster ever since. My first year and a half were hell. Constant pain, prednisone (Moon face!! unrelated to my screen name!!), fatigue, and hospital stays. I even had a weird reaction to a CT scan that gave me the WORST pain I EVER experienced in my bladder area (fistula??). About 3-4 months later I was getting surgery for a fistula to my bladder.

I had about 6 1/2 good years and then the symptoms started to return. Not as bad as before but bad nonetheless. I refuse to take biologics. This is because of the side effects associated such as cancer and infections. Also, when I was in the hospital with my fistula the GI docs tried to scare me into taking them by sending in a horror story surgeon to feed me a BS story about putting stints in my kidney catheters and so on. NOT nice. So I got the surgery by a wonderful surgeon and have felt (mostly) amazing until about a year ago.

Other than stomach pain, I have been having issues with insomnia and bloating (gas). My pup (my little moon girl!) is the only one that keeps me sane sometime. I'm on Budesonide and have been for about 6 months. Seems to work great!! I'm really interested in alt treatments like homeopathic, anti-map, and medical marijuana.

Well, that is about it for now. :)
 
DJW

DJW

Forum Monitor
Hi and welcome.
I'm sorry you are feeling this way. This disease can be horrible.

When I was diagnosed many years ago treatment options were limited. I developed some serious, life threatening complications. Fistulas are a symptoms of severe Crohn's.

Left untreated or under treated, your risk for cancer increases, need for multiple surgeries increases, risks for emergency surgery and complications increases, obstructions and bowel perforations also increases.

Please keep in mind the risk for cancer on biologics is extremely low.
Ultimately the decision is yours. Just make sure you have all the facts.

I hope you start feeling better soon. Sending you my support.

P.s. I'm on imuran and Remicade and doing very well with no ER visits, surgeries, or complications since starting biologics.
 
David

David

Co-Founder
Location
Naples, Florida
Welcome to the community. If you have fistulizing Crohn's, my first thought is Remicade. However, I understand your desire to stay away even if I don't necessarily agree with it. My suggestion would be to look into the clinical trial in my signature.

I wish you all the best.
 
Madhu

Madhu

Welcome to the forum. My husband has Crohn's with fistulas too, he has just started Remicade and is feeling better within 6 days. His fistulas have started healing visibly. Fingers crossed. My first suggestion would be Remicade too and the risk for cancer is very low. Our GI said usually risk for blood cancer is 1 out of 100, and with Remicade it increases to 3 out of 100. The decision is yours though. Hope you feel better :)
 
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