01-23-2007, 09:42 PM   #1
Help!! Yeah!!

So, after over a year of pain, weight loss, and misdiagnosis with kidney infections- I was finally diagnosed with severe Crohn's via a mass of inflammation on a Cat Scan, and then by an emergency Colonoscopy and EGD. Oh yeah, I also have reflux!
I have been searching and searching online for support...I am 27 years old, in a bumpkin town in Texas, with no support groups for people with Crohn's. I have felt scared, and alone. I want to email tag and discuss with people who KNOW what I am going through, and I think I finally found the place!!
I have been on drugs for about a month, Asacol and Entocort, and lots of vitamins and calcium. The doc couldnt even get into the opening of my small intestine because the inflammation and swelling is so bad (bad enough to cause a mass on my right side) I am so mad and in denial, I get told what NOT to eat, but cannot get a straight answer on what I can eat, seems like I can't eat anything but ramen noodles and broth. I went for my one month visit at my GI doc today, and he wants another cat scan, and is worried about a bladder fistula because of air in my urine stream.....Then, instead of adjusting my meds to get the right dose, he said he just wants me to start Remicade. I am scared of Remicade from what I have read, he said my disease is very active, I have bad joint pain, swelling in my ankles, and my body has gone crazy from the steroids. My question is- should he be so quick to say Remicade? Isnt there a insurance kick back for him for the drug since it is such high dollar? I dont know if I should get another doc, his staff is less than friendly, and I feel like telling him I dont want to go down the Remicade path will make him upset...His office will not work with me on appt times so I do not miss work- but my question is, how do you pay for all of the drugs you are on if you cannot work? I just want some opinions, I want to hear it from other sufferers. Do you feel depressed? I guess I need awhile to let it sink in.....I am scared because I am so underweight, and cant seem to gain because the part of my intestine that is sick has made me stop absorbing nutrients and such from food. Any advice or thoughts would help. I feel so relieved finding a site where I can vent with others like me.
01-24-2007, 11:01 AM   #2
Hi and welcome to the forum. I sympathise with your situation, I really do, but probably won't be much help where cost of meds in concerned as I live in the UK. I can offer support though, that always comes in useful!!
I had active crohns in my small intestine too at the illium site and have recently had that part removed as over the years it has gradually got worse. My first medication was Asacol also and I found that it didn't really do much for me, it doesn't absorb properly so that might be why. Anyway, I now take Pentasa and its still a mild drug with few side effects but its a slow release drug so it doesn't start to work until it hits the point of inflammation. I find it much better than Asacol. Have you tried it yet? Also have you tried Imuran? maybe these are drugs you may want to consider trying before having the Remicade. The thing is with the Remicade is that your body can become immune to it, especially if you're not having regular transfusions over a long period of time as say a maintenance drug. In this early stage of your crohns I would be tempted to hold off on it and try something else first if I were you, you don't want to exhaust all your options too soon. Ask GNC crohns man or Kev about other meds, they're really up on them. Hope things work out for you.

01-24-2007, 12:36 PM   #3
Nancy Lee
Senior Member
Nancy Lee's Avatar
Join Date: Nov 2006
Location: Windsor, Ontario
Steph, please feel free to email me anytime you want to talk.
You do have a choice over what meds you want to try with your disease.
We have to maintain some control over our own body...
As far as paying for the drugs..in Canada where I am they have a government run plan and it helps..we're self employed so before I was diagnosed did not have any help paying for meds...but, fortunately I was rarely sick.
When diagnosed with Crohn's...I had to do something fast, and found out about the government run health plan.

As far as your weight...I can understand that completely.
I lost 30 pounds in six weeks..
Have you tried drinking Ensure where you get all the nutrients you need?

Once again welcome to the forum
and don't be shy about asking questions or emailing members.

Diagnosed Crohn's & Colitis-January 1997.

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