Reluctant to start

[AgB621]

Well, technically my doctor has modified my diagnosis from Crohn's to more likely ulcerative colitis (though we have not confirmed either way), but it isn't a big deal since the treatments are roughly the same.

Anyway, I was scoped back in February, partly because I really was feeling awful, partly because I was due. I was flaring regularly, and having lots of pain when I wasn't flaring. My doctor said things looked pretty bad in there and she wanted me start Remicade. At first, I was totally agreeable because I had been feeling so awful, but after the scope (and the flare induced by all the laxatives) I felt much better. I had one mild flare while fighting off one of the worst colds I'd ever had, but other than that, I felt the best I had in quite some time. I was even dealing with some hugely stressful situations (namely, studying for the MCAT and working on medical school applications, in addition to classes/exams, etc.) and was barely symptomatic. As the MCAT approached, I was even pretty remiss about taking my meds (I'm on Lialda) for quite some time. I'm flaring now, but it took actually taking the MCAT (which I did last Thursday) and huge amounts of Advil (I had extended time and the test took 7 hours, I had a splitting headache to contend with) before I started to flare. And I'm already feeling my energy return and having fewer bouts of D. I wasn't able to start Remicade through all of this because of a number of factors with insurance and needing to get additional testing that proved far more complicated than it should have been. I ultimately decided to put it off until after the MCAT, in case of any weird reactions that may affect my performance.

Long story short, even with the flare I'm having now, I don't feel anything like I did before the scope, and am really not sure I should be starting Remicade when things feel so stable. Am I wrong to not want to start the treatment if my doctor thinks I should? I haven't seen her since the scope, but I've conversed with her nurse practitioner, and I've told her that I'm really feeling okay. She says the doc still wants me start on Remicade, but I haven't talked with my doctor about this directly. Should I start the treatment, or is it kind of like sand-blasting a soup cracker to do such an extreme treatment when my symptoms are (right now) so mild?

 

[Manzyb]

I don't think you are wrong for having those feelings at all. However, if your colonoscopy shows that things are bad in there, you might want to reconsider. Even though you are feeling fine, that doesn't mean that what was in there has healed. I would just hate for it to get even worse and then put you in a really bad and potential serious situation.

 

[ThatsWhatSheSaid]

That is a really hard one. I would tend to agree with Manzy a bit though. The thing is, even if you are not having a ton of D or other obvious issues, it doesn't mean that there is no damage being done to your body by the inflammation. I guess that probably doesn't help much, but it is something that you should definitely consider. Inflammation is extremely hard and damaging on your entire body system, even parts that may be under direct 'attack' and it can cause long term issues that would require more meds and potential surgeries etc. How much do you trust your doctor? You could take your results and get a second opinion.

 

[AgB621]

Thank you both, you bring up some really good points. Yeah, just because I feel okay doesn't mean I am. I do trust my doctor, she is definitely a top physician and she specializes in IBD. She showed me the pictures she took during my scope and I gotta say...ick? And even though I haven't had a lot of flares since, I'm not without pain/cramping on a pretty regular basis, and I still have some blood and mucus. Plus, I know things couldn't just heal up overnight! So I'll get to work on the Remicade thing.

Thanks for your input!

 

[Manzyb]

I really do think you are making the right decision. Good luck with the Remicade! I felt great while on it

 

[Pipergirl]

I agree that you should listen to your doctor, but maybe ask about other treatments? I went through everything from prednisone, budesinide, 6mp, etc. before my doctor went to remicade. I feel absolutely fantastic from the treatments, but i was glad my doctor went through some of the other choices before jumping to the big guns. Im sure whatever choice you make will work out for you. Good luck!