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Ulcerative Colitis
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Posted 4/17/2008 7:44 PM (GMT 0)
Hi All. I don't post here as much as I'd like so I'm going to be more active starting now. I'm going to start with a rant about the past few months and some of the frustrations I've been through.

I've now spent a total of 12 days in the hospital over 3 different visits since the beginning of 2008. The last one was this past weekend. All of this has been because I've been trying to find a long term UC med that works. Imuran and 6-MP both caused pancriatitis(sp?), which in turn set off another incurable disease called Cyclical Vomit Syndrome. I'm back to square one now with no game plan a 35mgs of prednosone a day.

I'm so tired of trying to navigate the medical industry (Healthcare is a false term) and being broke because of it. I've had to cancel all activities until september because I know I can't commit to anything, I might be in the hospital that week...

uuuuugggggghhhhhhhhh I want my life back. What comes after Imuran and 6-MP? is it Remicade? I dont trust my doctors as far as I can throw them, but I'm cornered and dont really have a choice. I've modified my diet over the years (I'll save that for another thread) and I know for a fact that I'd be a lot worse off if I had not started that a long time ago.

Sorry if this dosent even make sense..

For those of you who havent seen my intro thread:

m/26
UC Since 2003
35 Pred
Asacol
Rwasa

kthnksbye
Posted 4/17/2008 10:38 PM (GMT 0)
Yes, Remicade is next or even Humira (but this hasn't been approved yet for Uc I believe). What about probiotics? Have you given those a go yet? What is the extent of your Uc do you know? I'm sorry that your Uc has been giving you a heck of a time! Too bad you couldn't do 6mp or Imuran :(

Btw, what does I'm in the black lodge mean? lol
Posted 4/18/2008 5:05 AM (GMT 0)
twin peaks?

Anthrax song?

Condemned 1 or 2?

Posted 4/18/2008 5:12 AM (GMT 0)
$360....I feel for you being in such a situation. I can't relate through experience, but if I were in your situation, surgery might very well be a consideration.

I hope the last bit-gun meds will help you.

quincy
Posted 4/18/2008 1:47 PM (GMT 0)
I will do ANYTHING to avoid surgery. I'm 26, its not time for that yet. The thing is, I flared for about 6 months a just dealt with it because I knew that this was the road I would be taking once I did go to the doctors. Before, my life was livable. I went to work. I made art. I saw my family. I ate normally. Yes, I was in the bathroom pretty frequently but but was a small price to pay. Now that I did decide to go to the doctors, I've miss a month and a half of work and fear losing my job, and have spent 12 days in the hospital not counting numerous day of just being out of commission. Oh yeah, I've also been chemically dependent on 3 different pain medications in the past 2 months from these hospitalizations.

I'm not trying to negative, I'm actually a very positive person. I'm wondering if other people have have some of these same difficulties navigating the medical industry.

I'm going back to acupuncture.


ALSO:

IM IN THE BLACK LODGE is a line from Twin Peaks. Those scenes (in the black lodge)were all shot with the actors saying their lines backwards, and then the film was reversed. So amazing.
Posted 4/18/2008 2:06 PM (GMT 0)
I completely understand how you feel. I've had this DD for 10 years. I have tried every drug, diet, supplement, eastern "cures" that i could find (except accupuncture, ow!). I have been in this flare for 2 years and am tired of everything. However I do trust my doctor. I don't trust drug companies or insurance. I"m on remicade now and waiting to see if it works. If not then I am down to humira and surgery. Like you I am just not ready for surgery. I am 30. I want to have kids first! I haven't been able to work much in the past two years and feel like my life is on hold. I have an opportunity to see old friends in florida for free but don't know how I wll be in a month. Oh and I am so over being broke paying medical bills. I have to pay 10,000 out of pocket every year on top of huge premiums. Drugs not including my 10000 remi injections are about 800 a month. Do i think its a waste of money...probably. I'm not willing to stop taking any meds just in case though.

I too am usually very positive. I feel as though it can always be worse so I should be thankful. Usually that works but there are times when I seem to lose hope....for a time. It's hard. Usually its my husband that is able to help me back to a positive attitude. That and playing wii.

Has acupuncture worked for you in the past? I have always been to afraid of needles to try it.
Posted 4/18/2008 2:10 PM (GMT 0)
Hey $360,

I can empathize w/you somewhat, the sulfasalazine gave me kidney disease, so I am on pred for that and am not pre-diabetic b/c of the pred. It seems one thing is worse than the next.

Sorry you are going through all this, hope you can find a solution soon.
Posted 4/18/2008 10:55 PM (GMT 0)
$360 have you tried VSL#3 probiotic?
Posted 4/18/2008 11:31 PM (GMT 0)

Mellie said...
$360 have you tried VSL#3 probiotic?


I havent. Do tell.
Posted 4/23/2008 4:11 AM (GMT 0)
Just wanted to say Hi - my husband and I are twin peaks fans and loved that episode. It was truly amazing.
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