yeah well, I too feel much better on Remicade,
but I've been taking it now for 12 months, and my GI doesn't want me on it no more, because of the fear of getting Cancer.
even though it is working well for me
I understand he doesn't want me to get Cancer, and its impossible to come up with $12,000 every 2 months as it is, so I completely understand both those points
so I haven't decided what to do yet. the GI wants to push for additional surgery,
which personally I can't imagine what else they could do that they haven't tried already. although I haven't had anything removed or sliced off yet, so maybe thats what he was thinking I have no idea.
Its not exactally something I want to go thru by any means, but I think about it like this, "do I have a choice"?
RIght now, I'm just trying to figure out what to do about the pain.
I would be able to live with Crohns just doing what I have been doing, with a diet change and everything, but the Fistulas hurt so darn much, that I haven't figured out what to do about that part yet.
GI wants me to have more surgery, surgeon wants me on Remicade, and its just been a real headache for me trying to figure out what these doctors want me to do then.
In the meantime, I cannot sleep due to the pain.. I was up for 5 days in a row last week. and its been like that off and on for about 6 months now, The pain is just so strong, that it affects my sleep. I don't get any REM sleep for a week at a time, usually until I just pass out in exhaustion, not to mention the fact that I'm probably addicted to Darvocet now.
Now my family doctor, he'll give me as much Darvocet as I ask him for, because he does understand the pain is real bad, and he was there when they stuck a tube down my nose 6 years ago without any pain medicine or anything, without saying a word, so he knows that if I complain about pain, that it must be real extreme or I wouldn't be complaining at all.. He's know me long enough to know that.
Darvocet is the most wonderful drug for this problem though, because it also has a side effect of Constipation, which is not what I need, I know, but brief periods of Constipation helps, because the problem I'm having is located thru the sphincter muscles, so whenever they move, I feel it, and BOY do I feel it.
I literally dred having BM's now.. I actually try to "hold it" until the end of the day, because having to clean up and sit in sitz baths is not practical to do while at work.. Doctors don't understand I can't exactally take a 'sitz bath' with me to work everyday, besides being made fun of by other employees, I work in manufacturing so its not exactally a field you want to take a sitz bath into.
I mean, it would be different if I had an Office job, but since I do not, I have to do what I have to do to feed my family, which right now means working in a heavy labor intensive job, I just don't have a choice. nobody is exactally knocking on my door with a Computer job offer, so I gotta do what I gotta do until then.
so really I don't see what these doctors expect me to do that's practical. Do they want me to quit my job? because if I do, I won't be able to pay them for their services, I won't have income at all, or insurance at all if i quit my job, I won't even get unemployment if I quit, so I don't really understand what they expect me to do.
The most frustrating part, I have lost count of all the times I've brought all this up to my doctors directly, but they don't understand, I don't have an office job, I work in manufacturing, I am on my feet all day, usually standing in one place..
At home, yeah I can sit in a bathtub most of the day, usually sitting in a bathtub is the only thing that takes the pain away, then because I live with 2 other people with 1 bathroom, I can't sit in there all day long, so I gotta run out and sit on a heating pad to settle the pain down, otherwise if I don't do those 2 things all day, the pain is so bad I can't move hardly. and its not practical to go visit the ER every day either, so I mean, what do they expect me to do?
I have a friend here in my area, Mark, who is having similar troubles with doctors and pain. For a different problem, but still same difficulties talking to doctors. They don't want to give you too much Darvocet, so they tell him to take Tylenol.. hehe, it was funny, my friend Mark was saying to me the other day, just as a joke of course "here doc, let me stab you in the back with a chefs knife, and let me know if over the counter Tylenol does the trick for you, ok?" LOL it was rather funny, but still there is some truth to that, its like he was saying, the pain really IS that bad, but they just don't want to listen no matter how many times u tell them..
its frustrating to say the least..
About the only peace I have found in my life lately, is prayer. God and I have become so close over the last few years, and he is the one who has given me the courage and strength to deal with extreme amounts of pain like this, otherwise just sitting in this chair right now I'd be screaming at the top of my lungs in pain, even after it was drained a couple of weeks ago.
a lady at work was telling me I should have a stoma, er whatever that thing is called, a "poop bag?". She was saying her sister with Crohn's had that done, and her rectal pain went completely away with one of those.. I mean, its not exactally the treatment I look forward to, lord knows the cathetor treatment was bad enough I'll never go thru that again if I can possibly help it, but they don't give you a cathetor with a stoma, do they?
I know these are things I should be discussing with my doctor, but, when they don't tell you nothing, what u supposed to do? ya know?
read and ask questions on the computer is all I know how to do otherwise. Closest thing I have to a Crohns support group around here.
