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Newly diagnosed and frustrated

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olivetolaugh1

Hey there all we l my story begins with diverticulitis and an abscess that landed me in the ER when they did an abdominal exam they thought the abscess wrapped itself around my small intestine.....NOPE....after that lower bowel follow through diagnosed with crohns.....the put me on pentasa and I am worse than I was before! I never have had any issue other than loose bowel movements and if you poked my belly it hurt....NOW I run fir the rest room...expose myself to an even lower immune system than I had before....reading some of the literature some of this stuff can cause lymphoma??? Omg I was fine til someone poked me!!! I cannot be unique....my thought is if this disease is auto immune like my graves disease and my arthritis why are we not working on the immune system and not the symptoms???

Thoughts anyone???so frustrated
 
DJW

DJW

Forum Monitor
Hi and welcome. Has the specialist discussed long term treatment?
Many crohns sufferes go on immunosupressants such as Imuram and Humira or Remicade.

Sending you my support. Hope you find remission quickly.
 
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olivetolaugh1

No I was phoned told it was crohns and put on meds....Humira no thanks anything that has a chance of causing cancer or lymphoma is not an option as well as I am practically symptom free why such strong meds??we're you put on meds for severe symptoms? I was put on for a pain only noticeable if someone pokes me.
 
DJW

DJW

Forum Monitor
Sorry if I misunderstood your first post. I thought you were asking why they weren't targeting your immune system. azathioprine type drugs do that.

When I was diagnosed the drugs at the time didn't work for me. My crohns quickly went out of control causing MAJOR complications. I've lost count of all the surgery and compilations I've encountered. I'm now flaring again...but surgery is not an option. I only have a little over a metre left. The imuran and remicade are used to bring things under control quickly and avoid damage and complications.
 
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