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Crohn's Disease
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Posted 5/29/2008 10:16 PM (GMT 0)
Hi Everyone! I do not write in often but I am on daily reading and you have been one of my most valuable sources of information. In anycase my son now 18 was diagnosed almost two years ago. He began on Prednisone and Imuran and continued up and down on steroids for about 8 months. He then had a colonoscopy with little improvement. At that time he was put on Remicade and continued with Imuran, Pentasa etc. After 6 months of Remicade every 6 to 7 weeks he was scoped again with little improvement and his Remicade was increased to a maximum dose which he has continued until the present time. He is now needing Remicade every 4 weeks and although he has relief from the pain and fatigue which is lessened for a few weeks he is not making any progress. His GI wants to put him on Humira and has told me that only about 5% of patients fail remicade in this way. I think he needs a second opinion and I am leaning towards NIH or some other team of physicians preferably pediatric GI's to take a fresh look at his situation. We are willing to travel wherever we need to to get him help. He has been unable to complete highschool and although his class is graduating on Sunday he is not allowed to walk in the ceremony to add insult to injury. I would welcome any suggestions of where we should take him for a consultation. Thanks in advance.
Posted 5/29/2008 11:23 PM (GMT 0)
I just saw on the news last night a story about a boy who wasn't being aloud to graduate because of his Crohn's. I think that is just awful!!!
I would definitely go for second opinion! I'm having issues that my GI is not being able to help much anymore so I found a new one
and actually going next Friday to see him. It was a really hard step for me to take though as I've been with my doctor for almost 10 years.
He is a great doctor but I think he is just stumped with me right now and so maybe some new blood will help. Maybe someone new can help out your son better!!! I wish I could help you with pediatric GI doctors. Maybe check on www.ccfa.org site for one near you!!!

I hope you get some answers with someone soon!!
Posted 5/30/2008 1:09 AM (GMT 0)
That was probably the story about my son. We were on the 7:00pm news. The school has been horrible about the Crohns. They will not budge. They have no idea what he is going through and I am not sure that they care.Thanks for your support.

Posted 5/30/2008 1:37 AM (GMT 0)
I'm so sorry!! :-( I feel really bad for your son....and you too!! I'm not sure where his current doctor is out of but maybe
check with University Hospitals downtown Cleveland. There are some great GI doctors down there. I'm not sure if
any of them specialize in pediatric's but worth a shot. (((Hugs))) I wish I could help more. My current GI doctor is
at UH but I'm going for a second opinion next Friday and this new guy works out of Lake West. I'm hoping he can
help me!!
PM me if I can be of any help I will definitely try!!
Posted 5/30/2008 2:58 AM (GMT 0)
He goes to a peds GI at UH. Are you going to Dr Katz at UH. My son saw him also for a consultation. He seems to be very nice but not particularly aggresive. I hope you find somone to help you as well. Thanks again.
Posted 5/30/2008 11:06 AM (GMT 0)
Well, that's actually who I have been going to the past almost 10 years. Yes he is good but not aggresive. And that's my problem with
him right now. I'm needing him to help me and I just feel he isn't really wanting to do anything. After all these years with him and
now he isn't even sure I have Crohn's. But then he ended appointment saying he is almost 100% I do have it. Ok dude, either
I do or I don't and don't you think we should find out. ugh... He just did a blood test last week which I'm still waiting for the results
that is suppose to tell us if I have Crohn's. Ok why wasn't this test done years ago??? So yeah I'm just really dissapointed in him
right now. But he is all I have ever known and I never went outside the box. I feel horrible for going for a 2nd, but it's time.
I have a 2 year old son, husband, 2 dogs, family, I work full time, so I need to know what is wrong with me and I need to be
treated properly for whatever it is I do have. If it isn't Crohn's, then I need to know what it is!!!
Posted 5/30/2008 12:02 PM (GMT 0)
Have you thought about going to anyone at the Cleveland Clinic? Maybe your health insurance does not cover Clinic doctors.

Posted 5/30/2008 12:21 PM (GMT 0)
:(... That's awful the way the school is treating your son. *I can really feel for him... it wasn't too long ago I graduated from high school myself...*

I was getting really sick, then... almost thought I'd have to miss graduation, but I gritted my teeth and got through it... and ended up in the hospital a few days later... //@.@\\'...

Sounds like your son probably has a worse case of Crohn's than I do... *I haven't tried any of those biologic therapies yet... and I'm hoping I won't have to...* How has he been handling this emotionally? Are there any other teens with Crohn's that he knows?

*I know I get to feeling very lonely, sometimes*
Posted 5/30/2008 9:54 PM (GMT 0)

bowlies said...
Have you thought about going to anyone at the Cleveland Clinic? Maybe your health insurance does not cover Clinic doctors.


Our Insurance will go anywhere!!!  :-)     I have thought about it.  I want to wait and see how this 2nd opinion goes next Friday. I'm on the east side and so I thought how great would it be to actually find someone closer to home.  So I'm really hoping good things come out of this.  He works out of Willoughby and Mentor and we live in between.

Posted 5/30/2008 10:26 PM (GMT 0)
The team at Univerisity of Chicago under Dr. Hanauer is supposed to be top notch. Good luck to you and your son
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