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advice for a new diagnosee?

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Ulcerative Colitis
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Posted 9/6/2012 3:59 PM (GMT 0)
Let me just start off by saying that I'm so glad this board is here! I've learned so much and already feel so much better knowing that I'm not alone.
I was diagnosed with UC in Dec 2011 at age 20. Since then, my symptoms were minor until June when I started into what I can only describe as a flare. I did a 60mg prednisone taper, after that didn't work I was admitted for a four day hospital stay where I received cipro, flagyll, and prednisone through IV and was sent home with a 40mg pred taper. I was finally starting to feel better and finished the taper last week, but this weekend I began with new symptoms; extreme abdominal cramping, my fever is back, fatigue like I've never experienced, I'm so nauseous I can't eat and I've vommited once.
I called my doctor today and I'm anxiously waiting for a call back.
I'm about at my wits end, I can't work or eat or sleep or leave my house, I'm really unsure of what to do. Is all of this normal flare stuff? or is there something else going on?
Posted 9/6/2012 4:13 PM (GMT 0)
What meds are you on currently? Did they not put you on any maintenance meds like Asacol or another 5-ASA? You need to be on something to help prevent you from flaring. Your symptoms could be a flare-up or just a stomach bug.
Posted 9/6/2012 4:14 PM (GMT 0)
Welcome to the forums, I'm glad you found us. Although I don't wish it on anyone.

I think what you're going through is "normal".

I hope your doctor calls you back soon.
Posted 9/6/2012 4:41 PM (GMT 0)
I'm currently just on Lialda 4 pills daily. I was on 2 but after my stint in the hospital they raised it to 4 to help cope with the flare.
My GI just called and prescribed Bentyl for the pain in my gut... hopefully that will provide a little relief.
Posted 9/6/2012 4:55 PM (GMT 0)
Hi and welcome.

I think you should also call your GI and ask about mesalamine retention enemas. Studies show that UCers who use them in conjunction with oral meds reach remission more quickly than those who only use oral meds. This is because the oral meds aren't great at treating the distal colon and rectum, and rectal meds are.

Studies also show that those who use them twice weekly when in remission, in conjunction with oral meds, stay in remission longer than those only using oral meds.
Posted 9/6/2012 5:57 PM (GMT 0)
I hope the bentyl works for you. It didn't touch my pain, but the Asacol helped that for me. And yes, ask for the mesalamine enemas. They might help with the nausea. I've always heard rectal inflammation can cause nausea and it seems to for me.
Posted 9/9/2012 4:44 PM (GMT 0)
the bentyl seems to have little to no effect. and I can't seem to keep any type of solid food or anything other than water down now. my stomach and esophagus have started burning, with I can only assume is GERD? really starting to feel bad.
Posted 9/9/2012 4:52 PM (GMT 0)
My Advice:

TAPER THE PREDNISONE VERY SLOWLY! I tapered my Prednisone quite quickly and now I have an adrenal insufficiency. Pretty much, my body had stopped producing steroids all together and although it is reversible for me, it has been a long time and I'm still trying to get my body back on track.

I was in the hospital a few months back because I could not keep anything down and I was constantly throwing up. I was seen by an endocrinologist who told me that I had an adrenal insufficiency and that I was steroid dependent. Try your best to make sure this does not happen to you. Having UC is bad enough!
Posted 9/9/2012 5:40 PM (GMT 0)
Take a look at the 11th post under "Ulcerative Colitis Resources" which contains InSoFla's suggested protocol for getting UC under control.
Many years ago, I had a very bad reaction to Cipro and I personally think Prednisone is an invention of the devil. You might think I'm exaggerating but you should read some of the posts in this forum and the Ostomy forum that describe side effects users have experienced.
I also suggest you read "The Inside Tract", a book that I described in an earlier post.
Posted 9/10/2012 5:11 AM (GMT 0)
You'll know your really in a flare when your having constant bloody diarrhea along with abdominal issues and your running to the toilet constantly.

5-ASA meds are like a tiny bandaid that keeps falling off.

Prednisone is the enemy, it will make you feel better but if you use it to often it will mess up your body.

If you are constantly flaring and going on prednisone tapers you need to ask about stronger meds like Imuran / 6mp, because the prednisone will really mess you up eventually.
Posted 9/10/2012 7:17 AM (GMT 0)
Hi Katelynh21,

Sorry to hear your going through such a rough time - this site really is helpful.

Lots of differing views re diets and medications, hopefully you'll eventually find what works for you.

I agree with Fruitgirl regarding the enemas they were the best thing i could've introduced.

All the best.

Posted 9/30/2012 3:22 AM (GMT 0)
HI ya'll!
I figured I'd update you on how everything went down.
I was hospitalized shortly after my last post, I was underweight and malnourished from not eating for over a week, my hemoglobin had also dropped below where it was suppose to be. They gave me a PICC line and I had TPN (IV nutrition stuff? it made my mouth taste like how a multivitamin smells.. ick) for 7 days, along with IV steroids, cipro and flagyl and a clear liquid diet. I guess this is what you'd consider a "gut rest?"
Before I left I had another colonoscopy done, my UC has spread into pan-colitis but my GI said it appeared to be healing. Since I've been home I've returned to a fairly normal diet... the prednisone makes me hungry every few minutes, but I manage. I'm no longer bleeding or going 15 times a day! I do still have a little left side pain and I'm weak from being inactive for so many weeks, but I'm improving!
I'm no longer taking Lialda, we're working with my new rheumatologist to decide what I should be on (I also have Still's Disease and am currently taking Kineret so Humira, Embrel, or Remicade are not options for me). I think we might try Cyclosporine for a while, since I've been on it previously with the Still's and had no problems tolerating it. Trying to talk my GI into the retention enemas, he doesn't think they are necessary right now.

thank you so much for all your kind words and helpful ideas, they were very encouraging!
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