In the hopital-BLAH

Hey all-my hubby just brought me my laptop. Just wanted to update that I am in the hospital. I came Monday night-the ER was INSANE. Finally got a bed last night and am settled in here. I am feeling better than I was at home, but the doc says I am still losing too much blood to go home. He stopped in this afternoon and told me I need to be having 2-3 formed BMs to go home, and I am not even close to that. Of course, until dinner tonight, they would only let me have jello and broth, so not much to move along anyway. I am not on soft foods-we'll see how it goes.

They have all the paperwork in for the Remicade, so they hope to get that cleared with insurance tomorrow. I just got my TB test today, so as soon as the paperwork is cleared and the TB is able to be read, I should be able to get scheduled for that. He said maybe we could work it out to get my first infusion while I am here-but we'll see. They felt like next week at the latest. And he said we'll see how it goes, he may add Immuran with the Remi as well.

He did the flex last week and said things looked pretty bad-he said about 70% of his patients with the severity of disease I have end up with surgery, but he doesn't want to entertain that just yet.

So, hopefully all these steroids I am being pumped full of will slow things down, and hopefully the Remicade will help once we get that started too. I would love to be home by the weekend, but I guess time will tell.

I hope everyone here is doing ok-I haven't had a chance to catch up...

I hope you start to feel better and the Remi can get going soon!

Sucks you're at the point you needed to go to the hospital, but better since you aren't improving.

Hope the Remi gets you back on track.

q

Aw, I'm sorry you are in the hospital, Supa. I too hope the Remi helps get things under control. Take care, and keep us updated.

For the time being you may want to research the surgery -- I was very much against entertaining the idea of surgery for several years. I was on Remicade for two and half years but by last summer it had stopped working as well. I was having infusions every six weeks and only had four weeks of relief from symptoms.

I started to research the surgery (two excellent sites are www.j-pouch.org and http://www.colorectalcare.org/ipaa.html The latter site has the same information that my surgeon gave me when I had my first consultation with him).

The more I educated myself the more comfortable I got with the idea. I had my first surgery, removal of the colon, construction of the j-pouch and a temporary ileostomy, on January 12 of this year. The first few weeks were no picnic, and the temp ileo is difficult to live with, but I have regained my energy and actually feel pretty good for the first time in a long time. I am scheduled to have my takedown surgery (step 2) on April 6. My surgeon won't do the two surgeries sooner than 12 weeks apart, I am in contact with a woman who had her first surgery two days after mine and is having takedown next week, so your mileage may vary, but 12 weeks with the temp ileo seems to be about the average.

If you are landing in the hospital and medications aren't working, you may want to take the leap. I wish I had done this sooner and it was already behind me.

Feel better soon!!

Meesh

Thank you all-I agree, this disease SUCKS!!!

I am still here and the wi-fi is spotty. My first remi infusion went fine and it did help, but not enough to get me out of here. I have had 3 BMs today, still loose and bloody, and my GI won't let me go until they are semi formed and not bloody. Ugh. We are going to re-evaluate tomorrow and see where things are. He is talking about doing another flex sig, which I am dreading because it is what set me over the edge this last time. And he has mentioned something else-a cephalosporic rescue or something? I am not sure, but he said if it comes to that, it will be another week here in the hospital, so I hope it doesn't come to that. Right now, we are just trying to get me well enough to get home, I guess, and see how the continued remicade infusions go. He also talked about adding immuran or something as well-we'll see.

Meesh, I am glad to hear your experience. Like I mentioned, he said about 70% of people with my level of disease do get surgery, and at this point, I am wondering if that isn't the best thing. I know it isn't to be taken lightly, and I know it isn't perfect, but I hate living in fear of these bad flares and being hospitalized and such. It just plain stinks. I think we will see how this treatment plan goes, but as far as I am concerned, the discussion should come up because I don't want to spend my life jumping from med to med and dealing with the hospital stays and everything else. I want my life back!!

I can't get over how many people have been hospitalized lately as well-it is really discouraging. I hope and pray everyone can get into remission and stay there.

Anyway, any thoughts or prayers that I see some good improvement overnight and tomorrow would be appreciated. I am ready to get home!