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Crohn's Disease Forum » Your Story » New Here - My Story - Advice Needed


05-02-2017, 11:46 PM   #1
skiman384
 
Join Date: May 2017
Location: Seattle, Washington
New Here - My Story - Advice Needed

Hi Everyone,

I am 33-year-old male from the Seattle area who was diagnosed with Crohn’s Colitis (Large intestine only) when I was 17 years old. Since being diagnosed my disease has been mostly in remission, but as of the last month, things have been changing so I am looking for some advice, and a group to share my story with.

I’ll give you a timeline of events from diagnosis until now, as I think it will be easier to follow.

Age 17 – Diagnosed by GI Dr. Number 1 after Barium Enema, and Colonoscopy. Placed on 9 Pills of Asacol per day, remained in remission.

Age 20 – First major flare after pre-diagnosis flair. Asacol was no longer working, so I was placed on Prednisone to resolve the flair, and then placed on 6-MP for Maintenance.

Age 20-32 - Remained in remission using 6-MP. At about age 23, I stopped taking 6-MP daily, and took it just a couple times per week, sometimes more, sometimes less. I didn’t feel sick, so I figured, why should I take this drug all the time? 6-MP Blood levels were checked yearly, liver was always in good shape.

Age 32 – GI Dr. Number 1 tells me I should have a colonoscopy (first one since my diagnosis). After Colonoscopy, Dr. tells me he found something that looked cancerous, and there is active disease present. Labs come back from Pathology, and they are clean. Still taking 6-MP on no fixed schedule.

Age 33 – I decide I should get a second opinion for the first time. I see highly regarded research doctor (Lets call him GI Dr. Number 2) at UW Medical Center, and he tells me by not taking 6-MP regularly, I am not getting a therapeutic dose, and it is doing more harm than good. I start taking 100mg daily as prescribed. He also tells me he doesn’t like 6-MP due to its side effects, and would like to see me on a biologic. He wants me to take 6-MP for 6 months, and then come in for a Colonoscopy.
I come in for Colonoscopy February of this year, and my Colon and Large Intestine are mostly clear, disease is not active, colon looks good.

I go see my PCP in April for a Physical and my Liver ALT is 305 and my AST is 86. Test is ran twice, results are the same. He runs a Thiopurine test, and my 6-TGN is at 242, and my 6-MMPN is at 10459.
My PCP asks me to follow up with my GI.

I can see GI Doc #2 right away, and he wants me to stop taking 6-MP, get labs in two months, and if no inflammation or symptoms arise, stay off drugs altogether. Remain off drugs until inflammation returns, or symptoms return. If they return, he will most likely put me on Humira and Methotrexate or 6-MP as a combo if my liver can take it. He does not prescribe 6-MP for longer than 2 years due to its Lymphoma side effects. Sounds like a waiting game for a flair up.

I go see GI Doc #1 later that week, and he has two options. He doesn’t think a biologic is necessary as my disease isn’t that bad, and the side effects can be quite bad. He either wants to put me on a lower dose of 6-MP, and see if I respond, or put me on Lialda, 4 pills per day. Last I heard from him, he was leaning towards Lialda. GI Doc 1 says that if I had disease present in my small intestine, he would be me on a biologic, but since it isn’t, he doesn’t want to if he doesn’t need to…
Help. I have no idea what to do… Do I get another opinion? Both are opposites. Any feedback would be greatly appreciated!!

***Something to note… GI Doc #2 has received over 100k in consulting fees and entertainment from the companies who make Humira, Remicade, and Entyvio. GI Doc #1 has received one free lunch.***
05-03-2017, 04:42 AM   #2
ronroush7
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I dont know for sure but i wonderonder if GI doctor 2 is trying to push a bkologic hecause he has received consulting fees from these companies. You might want another opinion.
05-03-2017, 02:22 PM   #3
JessPeper
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I have been on Lialda since diagnosis last April. It does work well as a maintenance medication. There aren't many side effects with it either.
05-03-2017, 11:22 PM   #4
skiman384
 
Join Date: May 2017
Location: Seattle, Washington
I have been on Lialda since diagnosis last April. It does work well as a maintenance medication. There aren't many side effects with it either.
Do you think I should go on it until I get another opinion? Can't hurt right?
05-04-2017, 05:01 AM   #5
JessPeper
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[QUOTE=skiman384;975921]Do you think I should go on it until I get another opinion? Can't hurt

I definitely don't think so. If it keeps you out of a flare that's huge in my opinion!
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