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Hi, I'm Mycah, and I'm 18 years old. I live in the High Desert in California. I was diagnosed with Crohn's on July 5th of 2010, while on vacation. I went to the emergency room and they told me I had appendicitis, so I went in for surgery. While removing my appendix, they found that the problem was actually Crohn's. In the past few months, I have discovered that I have had Crohn's since I was 7. I am currently undergoing Remicade treatments, since last September. I will be going to college in the fall, as a freshman, where I will major in health sciences, and hope to become a Physician's Assistant specializing in Gastroenterology. I hope to gain support from this site, and possibly help others if I can.

Good for you Mycah! I would love to have someone helping me in a doctor's office that actually knew what it was like. You'll be blessing to someone!

Thank you for the encouragement for my future! And yes, having someone that understands makes a difference. There are so many uncaring "care"givers out there, and it makes others lose hope. I hope I can change that.

Hello Mycah and welcome to the forum, am glad you have decided to join How are you doing on the Remi, are you now symptom free?

AB
xx

Hello! No, I am not symptom free. When I started the Remicade in September, I only one cm of space for things to pass through my ileocecal valve and the first part of my colon. Now, it is only a little wider. It is working, but slowly.

I take it that as the narrowing is slowly getting wider that it is inflammation causing this? Are your docs happy with how things are going and more importantly are you?

Hey there Mycah and welcome to the community! Good for you going towards getting your PA. That's a great gig!

It's great to have you here and look forward to seeing you around!

Angrybird, yes the narrowing is getting wider. The inflammation was causing it, as well as ulcerations that were in the area. I'm not really sure how Remicade is supposed to work, except that it suppresses the immune system that attacks itself and causes inflammation, I think. My doctor is happy with how this is going, I think. I haven't seen him in a couple of months, but I got a CT scan at the hospital to review, and he told me that it is shows improvement, so I believe he is satisfied with it. As for me, I am still rather new to the whole Crohn's thing, not the symptoms, but the treatments. I'm not really sure how fast it is supposed to be, so I am satisfied with the rate that Remicade is working. I knew that it wouldn't be instant, and it would take longer due to the state I was in. When I did my CT scan, I was secretly hoping I would be able to stop Remicade, but I didn't bank on it. Do you know how long it is supposed to take?

David, thank you for the warm welcome, and for the encouragement!!

It does depend on the indivual as some here will feel a big improvement after a couple of infusions and some it takes a few more. A good place to have a look is on the remi club thread so you can have a chat with others on it to see how long it took for them: http://www.crohnsforum.com/showthread.php?t=4544&page=49. What symptoms do you still experience at the moment?

Thanks! I will give it a try! My current symptoms are chronic pain, frequent nausea, chronic loose stools, headaches, weakness, and fatigue.

To be honest I personally don't feel that the Remi is doing much good at this time as you have had only a very slight improvement in inflammation in 10 months and still have symptoms. When are you next due to see your GI? I am sorry that I don't sound very encouraging but I am concerned that you are still having so many symptoms :hug:

Also have you ever had any of your vitamin levels checked and if so how long ago and what level were they? It is common for us crohnies to be deficient in these such at B12, D and Folate and a low B12 level can cause fatigue among other things.

AB
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I'm not sure, I don't have an appointment. With the Remicade treatments, I would see him when I got the treatments, because he was usually at the hospital. But when I turned 18, I switched from Loma Linda's children hospital to the Adult Infusion Center. I didn't see him last infusion, so I'm not sure.

I don't know if I've had my vitamin levels checked. I get CBC every time, but I don't know if that includes vitamin.

I agree with AngryBird 100% and no, the CBC does not include those vitamin levels. You need to specifically request that they be tested.

I would see if you try and get an appt booked so you can discuss how things are doing, I don't think you should have keep putting up with these symptoms, you also then ask about getting your levels checked.

Thank you two. I'll do that. :thumright:

Keep us updated on how you get on and when you get the results for the levels get the specific numbers and post them here - even being on the very low end of normal can sometimes still cause issues.

xx

will do!!