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Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 8/24/2009 7:11 PM (GMT -7)   
You asked in another post about my no meds period of time and then my coming out of 'remission'. What happened was that I was not diagnosed at the time. I was 13. My Mom had CD all my life and I knew what I was looking at, but when I went to the doctor I was basically treated like an over reacting child. I was told to avoid the foods that bothered me. In the beginning that was lactose and fresh fruits, but the list grew and grew. I kept to a pretty strict low residue diet for the next 10 years. When things really started to get bad, they got bad really fast. I had a 10 month old and every doctor I saw thought I had hemmies, and I never mentioned the family history because I had already been told I didn't have CD. After months of suffering, my Mom came with me to one appointment and mentioned that she had CD and you could see the light bulb go off over the doctors head.

But I believe that the 10 years between when I first had symptoms and when I was finally diagnosed had caused untold damage on a microscopic level. I could never get things under control and ended up with a resection 5 years after diagnosis, then again 2 years later and again 2 years later. We finally found a combination of maintenance drugs that have kept things under control for the last 12 years. I will never again go with out maintenance drugs. Diet is important and I follow a pretty strict low residue diet, but so is finding the right maintenance drug(s). It can take years for the damage to show up and you may feel great, but when the S#^T hits the fan, it isn't pretty, and it can take a long time to get things back in order.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 8/25/2009 9:41 AM (GMT -7)   
Hi Suzanne,

Thanks so much for answering my question. I realized after I wrote it, that I probably should have just asked elsewhere as to not hijack the thread. I really appreciate sharing your story, and I'm so sorry you've had to go through all that. I'm newly diagnosed, just last month, so I'm doing a lot of research and trying to see what works best, although what I'm finding is that everyone is different.

I'm sorry it took so long for the doctors to finally diagnose you, that had to be extremely frustrating. But I'm happy to hear you have things under control! :)

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 8/25/2009 11:44 AM (GMT -7)   
It can be frustrating at first. But that is one of the reasons I hang around here, because I have been able to get things under control and live a really good life. I hope that by showing the newbies that things can be managed and sharing some of the things that took me years to learn I can make things easier for others. Tha's the wonderful thing about healingwell, everyone is willing to help others. I learn something new all the time, and I feel like I am doing a bit of good too.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

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