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Date Joined Oct 2008
Total Posts : 1
   Posted 10/24/2008 3:06 AM (GMT -6)   
This is my first post on this forum, so bear with me if it gets long.

My dh was dx'ed with UC in 2006.  His initial flare was horrible, but after a few days in the hospital on IV steroids he was on the mend.  He was initially on 60mg of pred and 12 Asacol/day. He was able to taper off both of those and has been happily maintaining just by taking Imuran.  He's had a couple of very minor flare ups that consisted of a bit of bleeding and pain, but was able to stay on top of it by using steroid enemas for a few days.
A couple of weeks ago, he ended up with a nasty lower respiratory infection.  He's now experiencing the worst flare he's had since his dx. It feels a bit deja vu to us because his initial flare with UC also followed a respiratory illness. It seems his body mounts too much of an immune response to fight the infection.  No fun.  He's in tremendous pain and has spent hours in the bathroom today. 
Although his initial dx was 2 years ago, I feel like we're really "new" to this whole disease. I think we both were in denial and tried to play it off as a fluke.  Dh even toyed with the idea of going off meds altogether to see what would happen.  It's clear now that it's not going to be a "one off".  We need to start learning more and trying to figure out the best way for him to manage his symptoms and develop a plan for flares.  I'm very annoyed because his dr seems slow to respond to his concerns.  I called right away this morning to ask for a prescription. The triage nurse told me to go thru the pharmacy and they'd fax a request to the dr. How are we supposed to even know what to request?  Doesn't that seem a bit backwards??  Despite this being the "easiest way" to do it, they didn't get the prescription filled by the end of the day.  (I requested Asacol).  It's very frustrating to know what he needs, but not be able to give it to him.  I plan on calling again in the AM to see if he should start pred, too. He doesn't seem to be bothered by any side effects from the steroids, although I may have to move to another state when he's coming off of them!
So, I guess my big question is how do you know what to do when you have a flare? 

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Date Joined Apr 2004
Total Posts : 23551
   Posted 10/24/2008 5:06 AM (GMT -6)   
Hi and welcome to Hw Robyn :) The first and foremost thing you can do is find a good doctor. A good doctor won't leave you in the dark and will explain things in detail to you. The second thing you can do is educate yourself as much as humanly possible by visiting www.ccfa.org or the resourse section here on the HW UC forum. And of course ask questions like you did. It can get all rather confusing and it does take a while to "get it". Do you know the extent of his Uc? One thing I may suggest for future flares - instead of jumping right to steroids, he can try using a 5-ASA rectal med such as Rowasa. This is basically Asacol in an enema. Then if he doesn't respond well enough, steroids can be used. Of course it's not as fast acting but it's alot safer. Even though he doesn't have any side effect from steroids, long term steroid usage is not ideal because it can deplete the bone.

I am so glad you are here to ask questions - it shows that you truly care for your husband :)
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**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
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