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The problem with crohn’s February 15, 2007

Posted by spacemom in : Fun with Crohn's Disease , trackback

To be honest, it was hard to find a title for this post.

Jay saw his specialist on Tuesday. They have decided that the anti/pro biotic thing isn’t working and it’s time for "R3micade". This is a drug that is given intravenously. The idea is to get him hooked up, starting in March, 2 hours a time, every 2 weeks for 3 infusions of this drug. They will check for side effects, they will test for liver function and things like TB.  IF this works, he would then go to weekly shots at home. The doctor was honest and said that 1/3 of the patients go into remission. 1/3 have relief, but need other treatments, 1/3 have no improvement. Well, let’s hope he is in the 67% that gets some form of relief with this medication.

I know, this isn’t about me, but I hate this disease. I hate seeing him in so much pain. I had the norovirus last week (that was my yuck). I gave it to Jay. For me, it was a horrible time. For him, painful and horrific. One of the ulcerated spots in the colon ripped open again because of the virus. He’s in pain every night when he lays down to bed. I have had people ask about surgery, but the honest answer is that it is a MAJOR surgery and so you remove one spot that is damaged. If you don’t remove the cause, another spot will become damaged.

I want my Jay back. The one who doesn’t have temper flare ups because of the damn steroids he is on. The one with the lean face (he has the steroid moon face now). The one who can rest and play with the kids in the evening. I hate this disease and what it has done to him. He feels old. And he isn’t….

Please hope that this med works. He’s been in a 4.5 year flare up. This just sucks…

Comments»

1. Mary-Mia - February 15, 2007

I’m so sorry! Thinking good thoughts that the R3micade has an effect.

2. Mariah - February 15, 2007

Oh I am so sorry you guys are dealing with this. Best of luck with the new meds!

3. lisa - February 16, 2007

I once knew someone with this diesease and it just sounds horrible. I am sorry that he (and you) have to deal with this…

4. carolyn - February 16, 2007

I’m so sorry….as you know, I have friends w/Crohns (one of whom is also infused on a regular basis) and it breaks my heart to hear about how awful it is.

5. carolyn - February 16, 2007

I’m so sorry….as you know, I have friends w/Crohns (one of whom is also infused on a regular basis) and it breaks my heart to hear about how awful it is.