Wednesday, August 20, 2003

Third Follow Up

I went to the doc yesterday. I am very growly about the whole thing. The one that has been assigned as my regular gi doc is out of town, so I saw a different doc in the practice. Which is fine, I don't particularly like my regular doc and this is one that was decent to me when I was in the hospital.

So, he goes through, wants to put me back on prednisone, I explained that I didn't do much better on that than I am now off of it and the side effects of the pred sucked. Wants me to try colazol again, which I had serious almost going to the hospital again reaction to 2 1/2 months ago when they tried it last. Then he decides to up my 6-mp again which is what the regular doc discussed last time I was there and then doing a test in 2 weeks to see if I have therapeutic levels. No problem.

Then during the examination he says that I am running out of options for treatment and that the next step would be remicade or surgery. He didn't seem all that fond of remicade. I have my own questions there...whether insurance will cover, what it involves, etc. He says "If this is affecting your quality of life, then surgery seems like the way to go" Uh well, DUH its affecting my quality of life, I am in the bathroom all the time and in a lot of pain, exhausted much of the time and can't do nearly the things I should be able to do.

After that...we sit back down and he is prepping to write the scripts and I ask about pain meds. I explain that the Tylenol 3 isn't working anymore (which I had said at the beginning of the appt...that it worked for a couple weeks and then stopped so I stopped using it.) I got this LONGGGGGGGGGG lecture about narcotic usage and how I should avoid it. He made me feel like a junkie even though I really am loathe to take any medication esp the pain meds unless I am really miserable. I hated the whole thing. It is hard for me to go in and ask for meds, particularly pain meds in the first place and to be treated like that made it even worse.

He also wants to do another colonoscopy but wants my reg gi doc to order it and such. So I was supposed to have an appt in 4 weeks, they couldn't schedule me until September. Grrr. I don't have time in September for such things. The blood test can't be done by the lab that the insurance covers so I have to go to another lab. (lets hope insurance will cover it...)

I came home ranting about how I wasn't going back. I really don't want to. I am tired of all of this. Anyone got a good snake oil treatment that can't possibly work any worse than all that I have taken so far? Yeah, yeah I know...I just wish something would work without having to deal with the doctors.

After the Follow Up

After the Second Follow Up

I was less than excited by the idea of enemas. Every night for two weeks? Take them and stay in bed for 8 hours without using the bathroom? Is she kidding?

It took a few days for the drugstore to get the enemas in so that I could pick them up. No problem. I wasn't in a hurry.

Once I picked them up, I read the directions. I wasn't thrilled. This looked like all the side effects of prednisone combined with the "fun and excitement" of an enema. It took me about five more days to get up the nerve and figure out the logistics of doing this discreetly. At this point, my girlfriend probably doesn't care, has seen and heard more about my bowels than she ever wanted to know, but I do care.

I took a painkiller, imodium, and benadryl since the label suggested that sedation and anti diarrheal and cramping meds might help. I then followed the directions for the use of the enema. It wasn't too bad. I didn't cramp horribly and though I had less than amusing noises from my belly, it really wasn't uncomfortable. Not only that...the next day I didn't go to the bathroom AT ALL. That was a first for a good long time. I was pleased. That next night I gave up on all the prep stuff and went for night two. Still, not so bad, mild cramping. Nothing serious. Hey, if this continues to help, I am game. Ah, well, it continued to help to some degree. Then it stopped helping. Things have been worse again. I am in my second week now of the two week course. What next? I am not sure but we will see.