Infusion Day

Got my infusion yesterday in Maryland and all went well. It was the first time I received it in the new Digestive Center and I must admit, I love the set-up. They have the infusion suites in the same area as the doctors offices so I was able to follow-up with my GI and then get my infusion right away. It's good to be surrounded by nurses and doctors who know you, and vice-versa.

My doctor is still perplexed over my symptoms, and is convinced that I may have an enteroenteric fistula. After doing research on it and listening to my doctor, it does seem to be the most logical explanation for my symptoms and the fact that they virtually disappeared for three weeks after my last Remicade infusion (Remicade is known for being a great treatment for fistulizing Crohn's). Essentially, this means that there is an unnatural connection between my small and large bowels due to the damage caused by inflammation, whereby I'm eating food and it is bypassing a large portion of my digestive system, thus not exiting through my ostomy and rather still traveling through my colon, and also not being digested, at all.

So he really needs me to do a small bowel follow through test before my infusion next month. I'm not happy about this because my doctor in Philly tried to get me to do this and I just could not stomach the stuff you have to drink beforehand. And although he ruled out a fistula via catscan, my doctor doesn't think it is necessarily the best test to make a conclusion one way or the other. So I really need to get this done.

That's it for now. I am still feeling like crap. Today has actually been really bad. But hopefully I will feel okay tomorrow for my sisters baby shower. Now, time to go bake...


Maya said...

Good luck with getting the follow through done. I hope you bake something fantastic to counter the taste of the prep :)

I was pointed to your blog by someone on chronsforum, when I asked if anyone had ever been to the IBD center at Maryland. I have an appointment there next week.

From reading your blog a little bit, I know that my symptoms aren't as bad as yours, but I'm still nervous about going to a new doctor. Could you tell me a little bit about what to expect/how things work there?


Ellen said...

Hi Maya,

Thanks for reading my blog. I don't know how much of my story you caught but essentially I just started going back to U of Maryland recently and I could not be happier.

I absolutely love my doctor; from the receptionists to the nurses to the rest of the staff, they are the best I've ever experienced.

As far as what to expect, you will probably have to do a lot of tests if you are newly diagnosed or even switching docs. But I think that goes for every doctor; they like to have tests done to cover their butt but also they need to see things for themselves rather than simply go off of your symptoms.

The only thing at Maryland that might be different is that they are very aggressive when it comes to treatment. While some doctors see drugs like Remicade as a last resort, my doc definitely has the mentality that you should do whatever necessary, even if it is early on, to control your disease. I am pretty sure the rest of the practice there operates on the same thought process. Depending on which path of treatment they suggest, be comfortable in your decision because there's always another course of action.

There's not much else I can think of. My only complaint is that they are the only practice I've had a colonoscopy done with that doesn't knock you out. That may seem trivial but it can be quite scary and uncomfortable if you aren't prepared for it. Also, be prepared to have your picture taken. I know, another stupid thing but I have this hideous picture from when I was 19 on the front of my file and I cringe every time I look at it because I wasn't prepared. Oh, and also, if you happen to see the same doctor as me, you're going to love him. He's not bad to look at :) Haha, it helps sometimes!

Good luck to you and hope you are feeling ok. Feel free to email me if you ever have any questions or want to talk. My email is efsween@gmail.com.