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How serious is a Chrons Disease diagnosis
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!
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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.
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1 ReactionDoes 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!
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1 ReactionI think my cousin gets help thru abbvie,her private insurance co pay is way to high, yes she does have to continue the drug.
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1 ReactionHello @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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2 ReactionsHello Marion! I was diagnosed with Crohn's at age 69. I am now 76 and have been taking Stelara for 6 years to manage it. There is no cure. Crohn's can rear it's ugly head in many different ways, all of them unpleasant! I understand your fear but with a little instruction you will be able to take charge and manage this disease. The infusion is a one time start up dose. The injections for me are every 8 weeks. This will differ depending on the medication ordered. It is true that this medication lowers your immune system by about 20%. You mentioned you already have autoimmune issues. Do you mind telling me what you mean by that? Based on what you have told us I'm not sure rushing into a surgery is the way to go. If your intestinal tract is full of ulcers you may not be a candidate for a resection and could end up with an ileostomy. I had to have one for 2 and a half years until the Crohn's medication calmed down the inflammation. .What labs have they drawn on you? C reactive protein would tell them your degree of inflammation.
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3 ReactionsCatherine thank you for all the info! This is so new to me that I am a bit overwhelmed. Every time I look something up, it negates something I had previously read. When me gastro told me the hard facts that I either take the meds or I will die, I shut down on him at that point. He never mentioned that I need to control my diet and eat smaller meal during the day. The dicyclomine pills he prescribe to settle my stomach down, has all kinds of crazy side effect. My autoimmune defects are Hashimoto's and Fibromyalgia. Thanks for the tip on the surgeon. I booked the appt on my portal, I'm surprised I was able to do that. I will call this am, and they will most likely tell me he can't see me!
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1 ReactionTeresa, my most troublesome issue is FEAR, that my gastro so graciously instilled in me. I have an appt with a new gastro Feb 5th!
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1 Reaction@marion49,
I can certainly understand your "fear" given the way your other GI specialist approached you. I hope that your experience with the new GI specialist will put your mind at ease and lessen your anxiety and help you to find a way to treat this problem.
Here is a link to a discussion about approaching a doctor's appointment. I hope that the posts on this topic will help you to look forward to the February 5 appointment with confidence and lessen any anxiety that you might have.
--Keys to a Successful Doctor's Appointment
https://connect.mayoclinic.org/discussion/keys-to-a-successful-doctors-appointment/
Will you keep in touch?
How do you feel right now? Any cramping and diarrhea? Feb is a long time to wait. What advice does your primary doctor have for you? You shouldn't have to schedule these appts on your own!
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1 ReactionStomach is uncomfortable and lower back started hurting pretty bad. Haven't looked that up to see if its a side effect. I have never had diarrhea! My doctor said she referred me to Gi docs and there isn't anything more she can do. I'm a bit disappointed in her right now.
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