Just diagnosed

Hey, I have been posting on here for a few weeks about my frustrations of not getting a diagnosis. At this point, I have lost about 60 pounds. I just got out of the hospital after 5 days. It was the second ER visit in a month. I was in the ER this time and they were about ready to send me home. I asked the doctor if he would mind taking my temperature. Luckely, I had a low grade fever and he did not want to send me home because I had the colonoscopy the day before. Interesting enough, both of the ER visits I had coincided with 1. Endiscopy 2. Colonoscopy. The medicine made me feel good and I ate, which was bad because I was obstructed.

Anyway, I got admitted in the hospital and they started saying stuff like I might have a rare disorder or disease. The doctor on staff said I might need to find a specialist in Seattle if my doctor could not find out what was wrong with me. I was so sad and in so much pain. I refused to take their pain medication because I did not want to be labeled a drug seeker. I thought that they would never figure out what was wrong with me. My doctor ordered an MRI of my small bowel because that was the only test that I had not had. My endoscopy and colonoscopy did not show anything abnormal, which made me sad because the CT scan of my small bowel did show some narrowing and "cobblestoning."

My MRI was definitely abnormal and my doctor diagnosed me with Chron's. Its in my small bowel by the terminal illium. They also did some tests which showed a lot of inflammation in my blood, which was funny because I asked my doctor to look at that in a blood test a week earlier and he said it was normal. I guess that is what you get when you ask your primary instead of your gastro doctor.

I'm taking Prednisone and I'm feeling better! I just want to tell people not to give up. I have been discouraged so many times. My first gastro doctor refused to do any more tests after the Endiscopy. I was scared that I had something wrong with my mind. Doctors minimize pretty much minimized everything to the point that I thought I was crazy. If you are in pain please don't give up. If I could have walked out of the ER this last time, I would have. The only reason I stayed was because my girlfriend told me to. If I had left, I would still be waiting for a diagnosis and not on the path to hopefully a remission.

I have so much to learn. I'm just glad that I know what I'm fighting against now. Question: is it ok to take Prednisone for a month? Is there anything I should be worried about. I can't thank you guys enough for the support and kindness that I have recieved here. :ghug:

We are our own best advocates, we just have to stay the course no matter what. That's how we help ourselves when it seems like no one else will. I am glad to hear you are getting what you need. If Prednisone works for you, use it. Make sure to take a calcium supplement as well, as the pred will leech it from you.

I'm glad you finally got a diagnosis Now continue to educate the heck out of yourself regarding this disease so you can be your own best advocate as Dunbar mentioned. We're here to help you with that and support you along the way.

*hugs*

Really pleased you finally have a diagnosis even if it isn't a great one. Have you been given a follow up appt date yet to discuss an actual treatment plan once the Pred course stops?

AB
xx

I've been on prednisone for over a month and by the time I'm done with my taper it will be July. Side effects vary by the person so talk to your Dr about any concerns. It really helped me feel better and I'm hoping by the time I'm done with it that the Humira will have taken over and I'll be in remission.

Thanks everyone for your support. Dunbar - how much calcium do you normally take with Prednisone? David - I'm reading and trying to educate myself. I'm also trying to figure out how to tell my family. Its hard because I don't want to worry them. Its also scary because my older sister has similiar symptoms as me and I know there is a genetic component. Angrybird - I got out of the hospital yesterday and I'm going to make an appointment today with my GI. Honestly, I really would rather not ever see another doctor as long as I live. But I want to get into remission and stay health. I read the side effects of Prednisone and it seems like all the symptoms of Chron's can be side effects of Prednisone.

As scary as Chron's is, I'm hopeful for the future. I know what I'm up against. I also know I have the support of the ones who love me and this wonderful group of people.

I can understand your concern about telling your family. I'm the same way. Let's hope that your sister doesn't have it too!

I've been on Prednisone at varying doses since October, the original course was meant to be 9 weeks but I have trouble when it comes to tapering below 20mg - this is because the Asacol they also gave me has not done its job so when I taper the Pred all the Crohn's symptoms come back. I'm currently on a drawn-out taper down from 35mg by 5mg every two weeks, I've made it down to 25 currently.

I am on a waiting list for a hospital bed to be admitted so they can administer IV steroids and azathioprine as the Pred/Asacol combo has not had results and steroids should really only be a short-term solution - I called today and I'm now number 2 on the list so hopefully will be admitted tomorrow or the next day! Not looking forward to being in hospital (my first time with Crohn's), but at least it is planned and not an emergency.

I've had a few side effects from the Pred, when I'm at a high dose my energy and appetite levels increase like crazy - I put on 4 (much-needed) kilos in a week. I've gotten quite a bit of acne, like in high school again! And my face has gained a lot of weight, the classic "moon face" - I think it is from salt and water retention. My teeth are quite sensitive as well. I'm told all these effects will go away once I'm finally off the steroids. I take a multi-vitamin for women daily which has a lot a calcium in it, as well as an iron supplement for anemia.

Hope that you continue to feel better and you eventually figure out how to get your disease under control for you (I'm still getting there!) - this forum is just amazing for information and support.

--Liz

I take 250mg cal/mag combination and 2000iu of vitamin D. The magnesium and vit D help to absorb? the calcium. Find out where your levels are, and talk to your Dr. as your levels, age, inflammation, pred dosage will all come into play as to how much you need.