How serious is a Chrons Disease diagnosis

Posted by marion49 @marion49, 8 hours ago

Landed in ER with a abdominal issues, after scans and morphine, they sent me Gastro Doc. Had a colonoscopy and upper GI endoscopy the findings were Chrons Disease. Doc flat out told me the only help would be Infusions, Self Injections, or Meds that would play havoc on my autoimmune system, which is already compromised. I told him those 3 conditions were not an option for me. He flat out said I would DIE if I didn't take something. I think his "presentation" scared me more than the diagnose. I'm trying to see another gastro, but it take months to get in. I was able to schedule appt with GI Surgeon asap, read that there were surgeries that are minimally invasive to treat Chrons. Bottom line, I feel like I was handed a death sentence, but after reading on group discussions that people have lived with this for years, maybe there is hope?? I am a 75 year old female, if I can get 10 (maybe 15, I have grandkids I want to watch grow) comfortable years, I am good!

Interested in more discussions like this? Go to the Digestive Health Support Group.

palermo1 | @palermo1 | 7 hours ago

My 24 yr old cousin has chrons and she waited a few years before doing infusions, scared of side effects but now she does infusion , and feels much better.

marion49 | @marion49 | 7 hours ago

Does you cousins' Ins help with the cost? I was told infusions were $1,400 each, and my Ins will not pay (but I am Medicare, w/supplement, that must make a difference). Was also told, once I start either of the 3 meds, I can NEVER go off them. I am sorry your cousin is going through this, she is so young!

palermo1 | @palermo1 | 7 hours ago

I think my cousin gets help thru abbvie,her private insurance co pay is way to high, yes she does have to continue the drug.

Teresa, Volunteer Mentor | @hopeful33250 | 6 hours ago

Hello @marion49 and welcome to the Digestive Health support group on Mayo Connect. I'm sorry to hear of the difficult decision you are facing regarding the recent diagnosis of Crohns Disease. I found a discussion group on Connect that might be helpful to you. Here is the link,
--Diagnosed with Crohns at an older age
https://connect.mayoclinic.org/discussion/diagnosed-with-crohns-at-age-61-from-routine-colonoscopy/?commentsorder=newest#chv4-comment-stream-header
In this discussion you will meet @catherine1290 and @lucismith. Please feel free to post to either of these members directly and ask questions about their treatment decisions and health issues.

What is the most troublesome symptom you are dealing with right now? How long will it be until you can get a second opinion from a different doctor?

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