Post-Impromptu Hospitalization Update

In case you remember, I went in to get some blood last Monday. Well...

-Ended up admitting me to the hospital
-Was running temperatures as high as 104.8. Still don't know why.
-Remicade officially not working anymore.
-GI was out of the country.
-New GI wanting to start me on a brand new (May '08) IV drug. (Starts with a "t" maybe?). I'm telling him no. I'm sick of this cocktail of drugs.
-Released last night from hospital. That is now three hospital "visits" in a year that have been about a week each.
-I'm going in for my follow-up with my new GI tomorrow before I head back out of town to school. I'm telling him I'm "sick of being sick", I want a j-pouch, and I want to move on with my life.

Wish me luck.

/rant

James,

Was it Tysabri maybe?
I don't blame you for making the decision you are. I haven't even tried Remicade yet and I'm seriously considering doing the same. I've made a list of questions already to ask a surgeon as well and I think it will really help. Here are some examples if you're interested:

How many j-pouch procedures have you performed? about how many were laparascopic?
Do you think I would be a candidate for laparascopic surgery?
Do you ever perform the J-pouch procedure in one step and do you think I would be a candidate for this, or is it safer and preferred to do it in two steps?
Could you show me what the scars would look like and where the stoma would likely be placed?
Is there anything that can be done to help minimize adhesions and scar tissue?
I understand that with the j-pouch, most people use the bathroom up to 10 times a day or more after surgery. This is how things are with UC and I’m wondering what difference there would be!? Will there still be pain and urgency?
What about the risk of incontinence?
How can hernias be reduced after surgery and have you found that they are a common problem?
When do you think I should be able to return to work?
What are the restrictions to follow afterwards, such as how much weight to lift and for how long?

Good luck and keep us posted, I'm really interested to hear what your GI says! I always wonder if they are very reluctant when someone "chooses" to have surgery; I'm afraid mine will give me a hard time and not give me a referral to a surgeon since I'm not deathly ill at the moment.

If my two cents if worth anything, I would opt for surgery.

 

Beth75 said...
James,

So sorry to hear that. I wonder myself if I am just buying time. Please let us know how your appt and consults go, I am very interested in hearing more.


EdieKristen - is the avg. really 10 times a day? I thought it was 4-6 and once at night???

Also, a question I have is how much control do you have when you have a j-pouch, how near to a toilet do you need to be? I would ask that.

Good luck w/everything.

Well, they say that right after surgery it can be up to 10 times a day, but after awhile when your pouch adapts it usually goes down to around 4 times a day, which I can definitely deal with.

I am really interested in the control/urgency as well. You would hope it would be manageable with no urgency since that's what we're trying to get away from!

I've read also that after the 1st step when you have the pouch but are not yet using it, they have you do water enemas and you start at a certain amount and try to hold it for awhile and then expel it, and you gradually increase to a certain amount of cc's to help expand the pouch before the 2nd step. I wonder if you were really diligent with this and Kegel exercises if you would have more luck after surgery and less frequency?

Strange, I just looked at the Tysabri website and this is what it says:

Tysabri increases your chance of getting a rare brain infection that usually causes death or severe disability. This infection is called progressive multifocal leukoencephalopathy (PML). PML usually happens in people with weakened immune systems. No one can predict who will get PML. Your chances may be higher if you are also being treated with medicines that weaken your immune system. If you use Tysabri alone, it is not known if your chance of getting PML will be lower, nor is it known if the length of time on treatment with Tysabri increases your chances. There is no known treatment, prevention, or cure for PML.

Tysabri is not recommended if you have a medical condition that can weaken your immune system, or if you are taking medications that weaken your immune system. Tysabri may increase your chance of getting an unusual or serious infection. Tysabri may cause liver damange.



OKay... so, if taking this drug with a weakened immune system could cause a fatal brain disease (which they never mention once whether or not it is rare... Every other drug says you may develop a RARE disorder, but this basically seems like it's pretty possible).. then why the heck are they giving it to people with IBD????? That confuses me, and this drug does not sound like anything I would want to risk taking.

Leukoencephalopathy is rare. It's also very ugly and slowly fatal. I'm pretty brave about drugs, but that's why I said it's a good drug to stay away from. I wouldn't take it ever.

My GI's staff said they will be using it only for rare cases of really difficult Crohn's disease, but the docs don't feel it's appropriate for UC when surgery is a viable option. The risks are low but terrible.