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$360
Regular Member


Date Joined Dec 2007
Total Posts : 34
   Posted 4/17/2008 1:44 PM (GMT -6)   
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
EGDOL KCALB EHT NI MI


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 4/17/2008 4:38 PM (GMT -6)   
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
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30391
   Posted 4/17/2008 11:05 PM (GMT -6)   
twin peaks?
 
Anthrax song?
 
Condemned 1 or 2?
 
 
 
 


*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Post Edited (quincy) : 4/17/2008 11:08:58 PM (GMT-6)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30391
   Posted 4/17/2008 11:12 PM (GMT -6)   
$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
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


$360
Regular Member


Date Joined Dec 2007
Total Posts : 34
   Posted 4/18/2008 7:47 AM (GMT -6)   
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.
EGDOL KCALB EHT NI MI


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 4/18/2008 8:06 AM (GMT -6)   
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.
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 5mg pred, 150mg Imuran
Prontonix once daily for acid reflux, zofran twice daily for nausea, darvocet for pain
Remicade started 3/1/08...just had 3rd infusion


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 4/18/2008 8:10 AM (GMT -6)   
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.
Beth, 32 ~ Major Flare Sept/Oct 07 ~ in remission
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 20mg 1xday (taper 5mg a week from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalpril 10mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your protiens!
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.


Mellie
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 4/18/2008 4:55 PM (GMT -6)   
$360 have you tried VSL#3 probiotic?
Diagnosed with Crohns/Colitis in 2004. Currently taking Azulfidine 500 mg/3 x 3 day, Synthroid. Have had joint complications such as pyroderma gangrenosum in ankles as complication of IBD.


$360
Regular Member


Date Joined Dec 2007
Total Posts : 34
   Posted 4/18/2008 5:31 PM (GMT -6)   
Mellie said...
$360 have you tried VSL#3 probiotic?



I havent. Do tell.
EGDOL KCALB EHT NI MI


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted Today 10:11 PM (GMT -6)   
Just wanted to say Hi - my husband and I are twin peaks fans and loved that episode. It was truly amazing.
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.
 
 

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