New plan from doctor

[chrisnsteph1022]

I saw my GI today for my 3-month check. I've slowly gone downhill for the past 5 months or so and am currently having diarrhea 10 times/day, lots of mucus, pain every day, nausea every day. No blood, though. So we're doing an upper and lower scope next Friday. If no Crohn's is found, I'll stay on the Cimzia and add welchol, assuming the symptoms are from having my gallbladder out 3 months ago. If Crohn's is found, we're dropping the Cimzia and Apriso and moving on to Remicade. I think it's a good plan!

I'm having a lot of pain high up, so I'm worried something is wrong with my stomach, hence the upper scope. But he reminded me that the transverse colon is up there, too, and I had several ulcers there in January.

 

[Cat-a-Tonic]

Good luck with the scopes! I hope that whatever happens, you're able to get some relief from your symptoms. I remember awhile ago you were complaining of daily nausea so I really hope you can get some answers about that and get it under control.

 

[David]

Hi Stephanie,

I'm sorry you've been going downhill for the last 5 months or so

I assume they're going to be doing some biopsies with your colonoscopy. If you're covered by good insurance and it wouldn't cost you anymore, might I suggest you request staining for mast cells? Most GI's don't but I think it's a test we should all be requesting.

 

[xJillx]

It sounds like a good plan to me, too. I am glad your GI is so proactive; I know you have been struggling lately.

Good luck next Friday, and please update us on the results!

 

[chrisnsteph1022]

Well, insurance wouldn't cover the upper scope, so we only did the lower. The scope showed active Crohn's, so I'm adding Imuran to the Cimzia before jumping to Remicade.

 

[Ian]

I think that's a good idea, it's best to see if you can get some mileage out of the Cimzia before switching. Hopefully adding Imuran will work for you! Good luck .

 

[kllyeve]

And what would the presence or absence of mast cells in your biopsey prove or disprove?

 

[Slim Johnson]

Be careful with the Imuran. It almost killed me. I hope your doc took the time to run the enzyme test associated with Imuran. If not, you should ask them about it. Mine didn't because my insurance at the time wouldn't cover it. I was fine for a few months, then I began getting SUPER tired. I mean I couldn't even put in an 8 hour day at work, I was so tired. Turned out I developed pancytopenia. In layman's terms, my body stopped producing blood. My platelets dropped to 1/25th of what they should have been, leaving me to need transfusions of blood and platelets. I also was forced to stay at home for three weeks because I had no immune system.

I am not trying to scare you, as I mentioned, there is a simple blood test to determine if you are predisposed to this condition.

Best of luck in you endeavors!

 

[chrisnsteph1022]

He did mention I needed initial bloodwork to test for something that metabolizes the drug.

 

[SdN]

I was taking Remicade and Imuran but had to stop Imuran because I became anemic from bone marrow suppression and required a transfusion. If you start Imuran make sure they do lab draws at least once a month for a while, they may not order them but keep them on their toes and don't let them slack off. I would have much preferred to not go through a transfusion and all the risks associated with that but the docs monitoring me sorta dropped the ball and it became necessary. Good luck to you on your scopes! I really hope they don't find any active Crohn's.

 

[David]

And what would the presence or absence of mast cells in your biopsey prove or disprove?

Mastocytic Enterocolitis which I think is much less rare than is realized because most GIs don't test for it. Those that do are finding it routinely and the treatment regimen is somewhat different.

 

[Slim Johnson]

He did mention I needed initial bloodwork to test for something that metabolizes the drug.

I recon that is what he was referring to. Thanks to the Presidents legislation, you can now take preventative measures with your insurance to help with the payment. When I was going through that stuff, the insurance wouldn't go along because they thought the test was unnecessary. Sounds like SdN experienced the same issue.

 

[David]

He did mention I needed initial bloodwork to test for something that metabolizes the drug.

That would be the TPMT enzyme. It metabolizes Thiopurine drugs of which Imuran is. You can read about it here if you so desire. It's good that your doctor is testing for it, some don't and, well... yeah.

 

[Slim Johnson]

That would be the TPMT enzyme. It metabolizes Thiopurine drugs of which Imuran is. You can read about it here if you so desire. It's good that your doctor is testing for it, some don't and, well... yeah.

Well look at the big brain on Dave!! :cool2:

That is what I was referring to! I am glad you could throw that out there.:thumleft:

 

[David]

Well look at the big brain on Dave!! :cool2:

Hahahah, I'm just good at Googling Someone a few weeks back was having all kinds of issues with 6-MP and then Imuran so I did some googling and came across the TPMT and myelosuppression. Turns out their doctor never tested them for it. :facepalm:

 

[Slim Johnson]

Seems to be more than ~3%... It's scary to think that something as simple as a blood test could prevent people from having to deal with pancytopenia. I remember my skin turning yellow, and my lips turning blue! I was thinking I had hepatitis, or something.

That was the first time I had a nurse call me back 30 minutes after a blood test frightened. Not a good thing to have happen. When the medical staff is scared, you are in some poo!

 

[chrisnsteph1022]

That would be the TPMT enzyme. It metabolizes Thiopurine drugs of which Imuran is. You can read about it here if you so desire. It's good that your doctor is testing for it, some don't and, well... yeah.

That's exactly what it was. I saw the lab order. TPMT and CBC. He said to go ahead and start the Imuran in the meantime, but I suppose he'll call me to stop it if something comes up in the blood work.

 

[Slim Johnson]

That's exactly what it was. I saw the lab order. TPMT and CBC. He said to go ahead and start the Imuran in the meantime, but I suppose he'll call me to stop it if something comes up in the blood work.

Don't suppose!! Call them and be certain. You do not want to have to go through pancytopenia, I promise.:rosette2: