Scared to death

I am a 17 year old female who was just diagnosed with crohns disease.(BID) Its not a fun disease and at the age of 17 I have rhumetoid arthrits and this disease effects my life greatly. I was, however, relieved when they told me it was crohns because doctors were so positive that it was either lupus, lymes disease, or luekemia. I was hospitalzed in January because of a pericardial effusion and a white blood cell count that was higher than any doctor had seen(these are doctors at childrens hospital of Wisconsin which is the 3rd best hospital in the country). This was when doctors were still not sure what was wrong with me. They finally decided to do a colonoscopy after they figured out I was losing all my blood in my bowels. I had also had extreme diahrrea, extreme weight loss, joint pain(arthritis), I  almost needed a blood transfusion, I was having trouble breathing, and I lost a lot of hair. The effusion was cured with 40mg of presnisone and then I tapered the prednisone and the effusion came back. Pericarditis is common in 20% of patients with crohns and I just so happen to be one of them. After my effusion came back the second time they put me back on 40mg of prednisone. Here I am today down to 5mg and I can feel things getting bad. I'm having trouble breathing, my heart and neck pain is increasing, and tomorrow is suppossed to be the last day I take a prednisone pill. I can't take prednisone for the rest of my life because the medication is pretty bad for you with the numerous side effects. Will I have to get heart surgery to cure this reucurrent pericardial effusion?


This discussion is related to 7 x Recurrent Pericarditis.

[Lutheran122]

Hopefully someone here can help you with your question , I just wanted to pop in and say to hang in there and make sure you keep working for a solution to this problem. If the Prednisone helps you breathe then you will probably need to go back on it if your still having the same issue. My sister in law was on 40mg for 4 years due to a bone disease and now she has been off of it for 3 years and she has been feeling fantastic and she looks great. I feel bad for you at your age to be going through all of these issues. I am 44 and abused myself pretty badly for a long time but I am trying to keep going and get as healthy as possible.

I assume with Crohns disease you will really need to watch your diet and well that is also the case with any heart issue so maybe you should get hooked up with a good nutritionist. Either way contact your doctor tomorrow and tell him your still having breathing issues and are about to finish your medicine. I will be thinking of you and wishing you well and please let us know what is going on with you.

[Lutheran122]

http://www.mayoclinic.com/health/pericardial-effusion/DS01124

This website above has a wealth of info on this issue , check it out. My neighbor had pericarditis and she just had to have it drained a few times , no heart surgery. Also antibiotics as well. Only if you are bleeding into the pericardium do they do something more invasive..well go to the link above. You seem pretty smart so I am sure you already have done plenty of internet homework on these issues your dealing with. Hope you feel better soon.