Crohn's Disease Forum » Your Story » I'm So Frustrated

10-21-2011, 07:14 PM   #1
Join Date: Oct 2011
Location: Virginia Beach, Virginia

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I'm So Frustrated

I got Crohn's 11 years ago. I got it from taking doctor prescribed Tamiflu when I didn't have the flu, (although, no doctor will ever agree to it.) I had IBS and went a doctor and he gave me Tamiflu. I took it and my colon bled. Coinsidence, I don't think so. Anyway, after going to a GI doc in Lynchburg, VA, where I lived, and taking several tests, including colonoscopy and taking several different meds, the ones I remember were flagyl, Prednisone, Ascercol, and several others, along with several different natural meds., nothings worked. It wasn't until I went to a doctor when I was visiting family in Maryland for Christmas. This GI doc did an emergency colonoscopy and diagnosed me with 6 months untreated Crohn's. He put me on Remicade and my colon finally stopped bleeding (approx. one year after onset) Remicade worked for 10 years. Then I moved to VA Beach and went to new doctor, and he did all tests again, including another colonoscopy. He kept me on Remicade, then said that it wasn't working any more and now have been on CIMZIA for 1 1/2 years. It doesn't seem like it's working anymore. The main symptoms that I have is excrutiating pain. I haven't had the bazillion trips to the bathroom since 11 years ago. Now my doctor wants me to have another Colonoscopy before he will stop CIMZIA, even though I haven't been in remission at all since I started it. I'm considering moving back to Maryland so I can have the insurance that the doc in Maryland takes and let him do the Colonoscopy, not the one in VA Beach. Is it worth moving again, when I just moved in Sept.? I don't know, but it seems like all my doc. says now is it's Crohn's with IBS. I'm so frustrated, I just want the pain to stop and now I'm really nauseous too.
10-21-2011, 09:41 PM   #2
Crohn's 35
Inactive Account
Join Date: Oct 2009
Snowchic.. It is a hard decision but I do know the moving is on of the 3 worst things to aggravate your crohns. I have been on Remicade and Humira, and they stopped working. I had a bad reaction to Remicade and Humira was ok but peter'd out.

I would go with whom you feel you trust and will give you the best treatment. Having a scope will show the intensity or spreading of your crohns.

Lots of people to give you some insight here, glad you joined us, let us know what you decide and updates.
10-21-2011, 11:43 PM   #3
Join Date: Oct 2011
Location: Virginia Beach, Virginia

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Thanks Pen! I'm so grateful for this forum. I wish I knew about it sooner, but better late than never. I realized that I may not have to move, but just temporarily stay in Maryland to get a second opinion. I have a friend there that I stay with every time I go there to visit. I pretty much have my own bedroom there, so I think that's what I will do. I know I need to get it looked at once again from the inside, and I do trust the doc. in Maryland, so that's what I'm gonna do. Thanks for welcoming me.
10-22-2011, 08:07 AM   #4
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zilla7777's Avatar
Join Date: Oct 2011

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Welcome to the forum! Moving cities with Crohn's disease does suck doesn't it? I need to go back to my GI 700km away because the one I tried to deal with at the local hospital turned out to be a little... Odd. Good idea keeping with the doc you trust. They seem to help faster and more comfortably than others, even when you do include the time it takes to actually get to them.
10-22-2011, 08:55 PM   #5
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Join Date: Jan 2011
Location: Pennsylvania

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Hi and welcome! I am sorry to hear Cimzia isn't working for you. Have you and your doctor discussed what treatment you'll try next? I sure hope that whatever you switch to gets you feeling well and puts you in remission.

Good luck with your upcoming scope and keep us posted.

Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...

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