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Liz3
Regular Member


Date Joined Sep 2008
Total Posts : 28
   Posted 9/14/2008 10:37 PM (GMT -6)   
Hey Everyone,
 
So I'm new to UC and of course new to this forum.
 
My story in a nutshell:
After feeling horrible for about 4 weeks, not being able to eat, vomitting, using the bathroom 15+ times a day, one visit to the ER and one visit to my PCP, I finally ended up admitted to the hospital for 5 days. I had a colonoscopy done (which they didn't sedate me enough for and I remember), was told that 2/3 of my colon was severely inflammed and that I have UC. I was discharged on 8/31/08 with a prescription of 60mg Prednisone for 4 weeks, and 400mg Asacal 2pills 3xday.
 
The steroids helped me feel better fairly quickly, but it seems that I'm on a very high does for quite some time. The GI doctor was also very confident that the Asacal would not work with me. He thinks I will probably have to end up on Imuran.
 
So, I guess at this point, I'm just dealing with all the uncertainty around this. I was discharged from the hospital on 8/31, so it's only been a few weeks. I just don't know what to think. I worry that once they start tapering the prednisone my symptoms will return, I worry that the Asacal won't work and I'll have to end up on Imuran. Imuran would not be good for me, my family already has a history of low white blood cell counts. I still dont' really know what foods will or won't sit well with me. I'm sure as you all know, the information you find online, and from different doctors, and different people all have a different story about what you can and can't eat.
 
I guess that's about it. All the uncertainty around having a new illness is stressing me more than anything. AND I don't care much for the side effects of the Prednisone. I haven't had a good night's sleep in weeks.
 
Does my case sound like a severe one? I feel like based on the dosage of the steroids and that 2/3 of my colon was inflammed it is....but then again I don't really know what to think.
 
What are your thoughts? Or suggestions on how to deal when first diagnosed?
 
Thank you for your input!
 
 
 

quincy
Elite Member


Date Joined May 2003
Total Posts : 30998
   Posted 9/15/2008 12:40 AM (GMT -6)   
Hi..welcome to the forum!

Some UCers have only one severe flare...the first one...having the rest of them more moderate and treatable.

How many biopsies did they take in the hospital? I would suggest you get a copy of the report, however.....that could give you some insight regarding the severity of your colon.

I would suggest you get referred to a GI....hopefully he/she will be able to help get you off the pred and onto a dosage of 5-ASA meds, both oral and rectal (consider where the UC starts..it cannot be treated with the oral meds alone).

You might never have to be on anything more than the 5ASA meds...you can refuse to be on pred in the future plus the big gun meds unless you cannot take the 5ASA....I would suggest giving them a chance at least. The do require patience, however. From there you could to the topical steroid meds or use them in combo with the 5ASA.

It's good you're startig to feel better,
quincy

Good you're starting to feel better,
quincy
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  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 !!!
 


Gigi1227
Regular Member


Date Joined Aug 2008
Total Posts : 469
   Posted 9/15/2008 6:47 AM (GMT -6)   
Welcome to the board, but I am sorry you are having a hard time. I was just diagnosised 8/25/08 and with all they told me I was in shock. Have been eating a bland diet once I was diagnosised. Did eat my first bit of red meat this weekend. I think this disease is a trial thing - one med might work the other may not - one food may be fine to eat another may not. It's crazy. I have learned alot from this forum and I think you will too.

Wishing you the best!

Gigi1227
Diagnosised 8/25/08 GRRR
Currently Flaring GRRR
 
Canasa
Asacol
Multi Enzyme
Mega Probiotic
Psyllium
Fiber Wafer
Nictotine Patch
 
 


TraciZ
Regular Member


Date Joined Aug 2007
Total Posts : 255
   Posted 9/15/2008 11:57 AM (GMT -6)   

Welcome to HW! You've found an excellent resource here.

Here's what I can add to the post; I hope that it's helpful to you. 

~It's important to get the right dose of asacol. I'm on 4 pills, 3 times/day (12 pills/day- the highest dose). It took some time to work. My GI said to give it at least 3 months. For the most part, it's working pretty well. I still get minor flares (with bleeding) when I'm about to get my period, but I'm a lot better. (I flared for 3 years before finding something that worked!)

~quincy's right- treat from both ends! Get on a rectal med. & also get a GI! They'll know better how to treat UC than a primary doc.

~My last GI (I got a new one in June) put me on pred. It worked for a little while, but when I went to go off it, I went back into a flare. That's a good way to get prednisone dependent. If you have a positive ppd, don't take prednisone or any other type of immunosuppressant unless you've been treated for it!

~My new GI told me that different 5-ASA's work in different locations of the intestine. For instance, Colozal works best for left-sided UC. It may take trying different meds and having them not work until you find one that does.

Good luck!


Tressa 35 (F) in WNY
unknown dx (UC or Crohn's), skip lesions & stomach ulcers
Canasa nightly, Asacol 12/day, prilosec twice/day for ulcers in antrum


sushik
Regular Member


Date Joined Aug 2008
Total Posts : 35
   Posted 9/15/2008 4:06 PM (GMT -6)   
Hi Liz,
Your case does seem severe, but alot of us here have gone through what you have at that level or even worse, so you're in the right place =)
And I think we've all struggled (or are still struggling) with the uncertainty involved with this disease we're stuck with for the rest of our lives. Most likely after your Pred taper is done you'll be fine...you might not be back to "normal" but you probably won't revert back into a flare right away. So don't worry too much.

As for foods to eat and not eat...sigh...good luck with that! I don't think there's a single thing that is edible that someone on this board will claim that they eat all the time and it's fine for them! And on the flip side, there's no single diet that works for everybody. For me, I have to stay away from too much raw veggies (I can't eat a big salad as a meal) -- it causes serious discomfort. Same with pasta. There's nothing that I eat that 4 hours later I'm bleeding or flaring, but I'm learning what's making me feel crappy. So far, when I've flared, I notice no pattern in my eating that could have consistantly let to the flare...bummer.

Anyways, why doesn't your doc think the Asacol will work? Also, I agree with TraciZ and quincy, you should be getting treated on both ends:
probably Asacol or Lialda orally, or Mesalamine enema or suppository in the other end. I switched from Asacol to Lialda, and enema to suppository a couple weeks ago, and life is better.
31 yr old male
Diagnosed: 7/07 - UC - Pancolitis
Current Everyday Meds : 1 Canasa before bed; 2 Lialdas
"Emergency Meds": Cortenema when I feel a flare coming on


marty1976
Veteran Member


Date Joined Nov 2005
Total Posts : 2045
   Posted 9/15/2008 4:25 PM (GMT -6)   
Hoi Liz there nothing more that i could add,i just want to welcome you to HW.
mARTY
                                     keep the faith 

         asacol/proctifoam/
Zoton (lansoprazole)/pred/colofac


       
                   http://www.myspace.com/martylogue


Liz3
Regular Member


Date Joined Sep 2008
Total Posts : 28
   Posted 9/15/2008 5:01 PM (GMT -6)   
Thank you everyone for your quick responses.

I am going to be seeing the GI doc that treated me while in the hospital--no way would I leave this matter to a PCP. My next appointment is on 9/26. He said based on his experience, he didn't think the Asacol would work because the level of severity and because it hit me pretty hard, pretty quick, as oppossed to small flares here and there and then the big one. That being said, I was discharged by a different GI doc (it was over the weekend and mine was off), who put me on the Asacal anyways. I've been taking it along with the Prednisone, and so far I've been ok. Now whether I'm okay because I'm still on the Prednisone or b/c the Asacal will work for me--I don't know. The bleeding has stopped, the urgency to use the bathroom stopped. I still will feel bloated and my stomach grumbles most the day, which is a mild discomfort, but completely tolerable.

I had delt with pretty horrible symptoms for weeks without any treatments. By the the time I was admitted to the hospital I was barely eating/drinking and vomiting. My blood work reflected low sodium, dangerously low potassium, anemia, low proteins, and high SED rate--all of which I was dealing with. So my point is, I feel like if the Asacol doesn't work, then I would recognize the symptoms right away and would be able to get it treated before I ever get to the level that I was at with my original flare. And then it would be time to look into alternative meds, as oppossed to just jumping into the Imuran. I just don't see the harm in trying the drugs with the less side effects first. If the symptoms were returning, couldn't I get it treated before I ever had to be readmitted to the hospital? Does that seem to make sense to you all based on your experience?

I'm not sure how many biopsies were taken. I will see if I can get a copy of the report at my next appointment. If I were told 2/3 of my colon was inflammed would that just be considered left-sided or more than that? (Clearly I'm not big on anatomy!)

Thanks for everyone's help!

Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 9/15/2008 9:24 PM (GMT -6)   
Liz,

Just wanted to let u know that when I was being diagnosed in 2007, my UC was so bad I was hospitalized for 25 days. Before I was in the hospital, I was on Asacol. The doctors took me off it in the hospital and started me on Remicade immediately. So, I know how severe u might be. Constantly ask questions, and keep setting up plan b, plan c, just in case the first plan doesn't take completely. I was released from the hospital still taking Remicade, but my third dose of it I became allergic to it. So, my next plan was Humira, been on that since May 2007. I'm in total Remission. I hope that gives u some hope.
Diagnosed with UC since March 2007
Taking Humira and Imuran since May 2007


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 9/15/2008 9:58 PM (GMT -6)   
Just to weigh in, I don't think your prednisone dose is too large if you are really sick but I don't get the four weeks thing it doesn't work that way. I think your asacol does is too small. because I also have taken 12/day when really sick, no side effects, and it worked (that what I took during the drug study). But I'm not a doctor, so I don't know why you got what you got. Make notes of your questions so you are prepared when you see your doc, and ask ask ask.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. 
Currently tapering OFF prednisone from lingering flare;
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free, soy-free, etc. diet which resolved flare. Also Replete probiotic, DGL (licorice root, slippery elm), Permeability Factors. Slow-release iron and B-12 shots for severe anemia.
Sept: Mild case of thrush in throat, prescribed antifungal mouthwash.

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