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Jen O
Regular Member


Date Joined May 2009
Total Posts : 136
   Posted 5/13/2009 11:21 AM (GMT -6)   
Here I am waiting for an apt with a new GI doc that specializes in IBD, I am scheduled on Friday. (My usual guy has NO experience with UC patients, his latest quote to me is "there's a cure for your disease, a total colectomy with a J-pouch")

My flare is BAD. I have had about 5 or 6 bloody Ds today (luckily my day off work this week) and 5 Ds overnight that weren't bloody.

I last had my Remicaide a little over 2 weeks ago. Obviously it's not working anymore. I am sick and frustrated.

And by the way, my back and neck and left hip hurt like HE@***.

I already called off work for tomorrow. I guess I'll have to rest and I'm not getting admitted to the darned hospital again. Been there, done that.

This site is good for letting me vent, thanks a lot everyone!

Jen
Age 34
Diagnosed with UC September 2008
Current Meds:
Remicaide
Just started taking Asacol 1200 mgs 3 x per day 5/7/2009
Biotin 5 mg
Vitamin D 2,000 IU per day
Calcium 1500 mg per day
Multivitamin


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/13/2009 11:34 AM (GMT -6)   
I'm sorry you're feeling so badly and I hope you like your new GI.

However, your old GI was right, that the only true, permanent cure for UC is surgery. I honestly take comfort in that knowledge...if all of the meds quit working, I know I can have my darned colon removed and be rid of UC for life.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16447
   Posted 5/13/2009 11:39 AM (GMT -6)   
I am sorry you're not feeling better. I was having 10+ bloody movements a day and multiple throughout the night a few months ago and I am now nearly in remission. I just want you to know that it is possible to heal with the right treatment. I know Remicade is usually one of the last medications they try before surgery but you could try Humira or maybe some dietary changes? It's awful to feel like you have no options... I hope you have luck with the new GI. My back and neck hurt me too. shakehead
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day)
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 5/13/2009 1:36 PM (GMT -6)   
that sucks- why have you just started Asacol? Usually they keep you on it a while, prior to Remicade, at least. 2 weeks isn't very long for the infusion to last. I'm sure the new GI will give you tons more options than surgery, don't fear! And honestly, 5-6 episodes of D a day isn't too bad, unbelievable as that may feel. Hang in there 'til Friday- I think you'll be surprised with your new doc. Why no prednisone? Definitely give steroids a chance, they'll do wonders if you've never taken them before.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


mamaluke
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 5/13/2009 1:58 PM (GMT -6)   

the truth is, your doc is right - the only way to cure UC is to remove your colon. My son got run over by the UC train 10 months ago and finally this week, had his colon removed and we are on track for the J-pouch. we tried everything and he got little relief and had terrible sick effects from everything. it was a big step but at least he will be free of this cursed disease and free of all the terrible meds that sometimes make you sicker. good luck - i really hope you feel better. you must see docs with knowledge of UC and make sure that whatever hospital you choose for any treatment is knowledgeable about this disease. Trust me - it makes a difference. Most ER nurses and docs DO NOT have specialized info on the diseasr - take it from one who knows. We were in and out of hospitals for 10 months and finally, at MT SINAI in NYC, we got the expert, compassionate care.

 

Good luck to you


Jen O
Regular Member


Date Joined May 2009
Total Posts : 136
   Posted 5/13/2009 3:28 PM (GMT -6)   
As an aside why I am not on any steriods and why I just started Asacol:

When I was originally diagnosed with UC, I was hospitalized. I was given IV solumedrol. My blood sugar went out of control, ended up needing insulin injections. They discharged me (when I was really no better, thanks to the lovely insurance company but this isn't the place to get into that) on 80 mgs of prednisone, Asacol 2 pills (800 mgs) 3 times per day, and I was checking my blood sugar and giving myself insulin injections 2-3 times per day depending on my numbers. I continued to bleed and go to the bathroom upwards of 30 times per day. I finally went back to the ER and was admitted again. IV solumedrol again, lots of enemas and supositories. Really no better on that protocol after 7 days in there. Finally (since I had been on the 'net while I was there and researching) I asked about Remicade. They reluctantly agreed to let me try, reluctantly because I'm a physical therapist and have to work with a lot of people every day and they didn't want me to get an infection as a result. I told them it was worth it to me to keep my colon. So I got my first dose in the hospital, DRASTIC improvements by the next day. Discharged home on only Prednisone as I had to taper off of it. It took months and when I was finally down to 15 mgs a day I wasn't needing insulin anymore, thankfully! Dealt with all the side effects, I couldn't sleep, I was irratable, gained a lot of weight (I needed to anyway as I was down to 105# from 135), lost 80% of my hair, etc...

Basically I was told that my UC is "steriod refractory" meaning that it doesn't respond at all to that kind of medication. I was fine from that first infusion (The first week of October 2008) until my last 8 week session. I started getting some blood on my formed BMs in the 6th week. It went away on its own, even before the next infusion.

Now this "flare" has been about 4 weeks long so far. Last night and This am was the worst day by far. The bleeding started again in my 6th week after the last Remicade infusion. I waited a week to call the Dr because last time it went away on its own. It gradually progressed to bloody D and finally I called him. As the place where I go for my infusions is a busy "Cancer Center" it was hard to get my appointment moved up. He managed to do it by only 2 days. I didn't get better right away as I had before. It took a few days, but then I was left with some urgency and really soft BMs a few times per day. I could live with that but it wasn't as good as it had been before so I called him. That's when he told me to go back on the Asacol and re-contemplate the surgery.

I just know from being on here and reading a lot of other stuff that there are other treatment options that we haven't tried. My current GI doc is just a community based general gastroenterologist. I asked him how many UC patients on Remicade he has and he said 2. That's when I decided that I was going to get another opinion. I made an appointment (and supprisingly it was only 4 days away) with an IBD specialist at the Cleveland Clinic. He sees only Crohn's and Colitis patients. I am sure that he will know a lot more and have other treatment options!

I called my Primary Care doc today and she wrote me a script for Ultram (a pain med that you can take that won't make you bleed). Oh, how much better I feel this pm after taking just one of those buggers!

Anyway that's the long story!

Jen
Age 34
Diagnosed with UC September 2008
Current Meds:
Remicaide
Just started taking Asacol 1200 mgs 3 x per day 5/7/2009
Biotin 5 mg
Vitamin D 2,000 IU per day
Calcium 1500 mg per day
Multivitamin


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/13/2009 3:41 PM (GMT -6)   
Sounds like you've really been put through the wringer.

I found some good articles from the IBD Journal a while back, all of which discuss how to manage steroid-refractory UC. They were published in the January 2009 issue, and they are all available on-line for free
http://www3.interscience.wiley.com/journal/121549458/issue

They start on page 141 and run through page 153.

I thought you might like to read them before your appointment at the Cleveland Clinic!


Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


Malkavian
Veteran Member


Date Joined Mar 2009
Total Posts : 1439
   Posted 5/13/2009 3:43 PM (GMT -6)   
That sucks, I hope you feel better. Get some rest for now, and make sure to drink lots of fluids and try to get some calories in you.
21, female, diagnosed 3/6/2009
Mild ulcerative colitis from rectum to mid transverse colon
Currently in remission
Currently taking Asacol (3x/day) and Calcium/D supplements


Jen O
Regular Member


Date Joined May 2009
Total Posts : 136
   Posted 5/13/2009 4:01 PM (GMT -6)   
fruitgirl,

Thanks for the link. According to those articles, it doesn't look good for me! :(

Jen
Age 34
Diagnosed with UC September 2008
Current Meds:
Remicaide
Just started taking Asacol 1200 mgs 3 x per day 5/7/2009
Biotin 5 mg
Vitamin D 2,000 IU per day
Calcium 1500 mg per day
Multivitamin


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 5/13/2009 5:47 PM (GMT -6)   

jeez, what a mess.... I didn't read any of the linked articles, but from what you describe, no it doesn't sound to good for you! Although I'd imagine surgical intervention would probably be some measure of relief, at this point. Well you answered my questions- I was thinking you may have had some totally clueless old-school GI, but apparently not. Cleveland Clinic is the place to go- I hope they can give you what you're looking for! I think I'm probably steroid refractive by now, & last time I took pred I also got the pred induced diabetes. lovely. Thankfully the Remicade is still giving me 4-6 weeks of relief, so I'm sticking with it 'til the bitter end. I assume you're on the higher dose, 10mgs/kg? well Good Luck!!!! definitely keep us posted as to how things go. and read the ostomy forum here- it's a GREAT forum, very reassuring.


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


Jen O
Regular Member


Date Joined May 2009
Total Posts : 136
   Posted 5/13/2009 6:23 PM (GMT -6)   
I am NOT on the 10 mg/kg dose. My current GI won't do it. Maybe that'll be what I need. That would be much better than the alternatives!
Age 34
Diagnosed with UC September 2008
Current Meds:
Remicaide
Just started taking Asacol 1200 mgs 3 x per day 5/7/2009
Biotin 5 mg
Vitamin D 2,000 IU per day
Calcium 1500 mg per day
Multivitamin


carmen
Regular Member


Date Joined Feb 2003
Total Posts : 499
   Posted 5/18/2009 9:05 AM (GMT -6)   

Hi, I noticed you just started asacol, ....When I have taken asacol....OH MY BACK Too!.....Asacol makes my back hurt so bad.

And my whole body aches. Pentasa makes it even worse for me...]

 

Thanks

Carmen

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