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Advice anyone? Flaring.

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Ulcerative Colitis
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Posted 5/29/2011 10:20 PM (GMT 0)
Hi all,

Well it seems I am in a flare.  I went to my GI last week who suggested we try Remicade.   She said I really haven't gotten into remission since I was diagnosed.  I have had days, even weeks of feeling better but that's it.   She told me she would not give me anymore hydrocortisone enemas and I should not be doing them on a "as needed" basis.   I told her that they make me feel better.  She said I dont have left-sided UC so they should not help.  Long story short, I left her office wanting a new GI.    My dilemna is I am leaving on Thursday for a 15 hour car ride to my sisters in NJ.  I am concerned about the drive and the trip there.  I have to attend a wedding and I really want to be able to enjoy myself.   As of today I am going around 3 times a day, a mucosy mess.   I am nauseous, have no desire to eat and really little energy.   I am wondering if anyone has any suggestions to help me get through the next week because on my return I am finding a new GI as this is not the first time I have felt like a co-pay and nothing more to her.

Thanks for any imput.

BTW... I am really not doing any enemas at the moment just my Apriso, but I do have a couple Hyrdrocortisone ones left and some Rowasa.

 

Posted 5/30/2011 3:31 AM (GMT 0)
I feel for you with the car ride issue - just completed 18 hr one myself. All I can say is make sure you read the side effects of any new drug since you leave so soon. I started Canasa right before I left and was vomiting and dizzy the entire way. I couldn't even drive I was so dizzy. I now feel fine using them, but it took a few days.
Posted 5/30/2011 4:24 AM (GMT 0)
Do the Rowasa enemas help? They don't have the same side effect issues as the steroid enemas for most people.

I believe there are studies that have shown conclusively that rectal meds can be beneficial for people with pancolitis.
Posted 5/30/2011 6:36 AM (GMT 0)
the GI is right on hydrocortisone enemas. you will become dependant. and there are a lot of stories here of cortisone dependancy and how people try to get read of it.

try rowasa enemas, if you are reluctant for remicade. maybe they will help.

good luck.
Posted 5/30/2011 9:14 PM (GMT 0)
Thanks I have never really tried Rowasa or given it a chance. I am leaving on Thursday and the anxiety of this entire trip has my tummy gurgling, gassy and D. When I return it will be time to find myself a GI I feel comfortable with and discuss my future options.

I wonder if I should start Rowasa today through Thursday.

  Does anyone else suffer nausea and no appetite while flaring?

Posted 5/30/2011 10:18 PM (GMT 0)
I agree with the doctor that you shouldn't be using the cortisone enemas on an as needed basis but did you ever do them nightly for a few weeks and try to taper off to see if you can get off of them without the return of your symptoms? If you're worried about the car ride, you need to find something that will control your UC. Have you considered 6mp or Imuran?

I would definitely try Rowasa and see if it helps but I doubt you would see significant results before Thursday. Will your GI prescribe Rowasa?

I think you need a second opinion but I also think you need to seriously consider what the next step in your treatment is. It may come to prednisone or Remicade.
Posted 5/30/2011 10:23 PM (GMT 0)
Thanks Notsosicklygirl, yes I have Rowasa and I will start that tonight. I dont have any blood, just 3 or 4 BMs of mucos I previously did 2 weeks of the hydrocortisone enemas and when I tapered my symptoms came back, that was 6 months ago and I realized they made me feel better so I would do one a week  (bad thing I guess)  .

 I also suffer from nausea and no appetite. This is a very special day for my sister and I so want to enjoy it! UGH! This disease!

Posted 5/31/2011 4:42 AM (GMT 0)

BelleyAche said...
TI previously did 2 weeks of the hydrocortisone enemas and when I tapered my symptoms came back, that was 6 months ago and I realized they made me feel better

this is what stands for dependency....
Posted 5/31/2011 10:59 AM (GMT 0)
I did the Rowasa last night, this morning I have had 4 explosive BMs and am now seeing blood. Now I am becoming anxious and I know this must not be helping the situation.
Posted 5/31/2011 4:16 PM (GMT 0)
I don't think it's the Rowasa at this point...it took me weeks for things to show improvement during my first flare.
  If I were flaring, what you experienced would be the same as me, regardless of using a 5ASA enema
Hang tough...Are you still using 4Apriso daily?

q
Posted 5/31/2011 4:46 PM (GMT 0)
Q,

Yes I am on Apriso 4 daily. My concern is the very long car trip I have Thursday which is probably just adding flame to the fire but I am going to stick with the Rowasa. I wish I could get more of a BM and less watery mucos. Funny that I went 4 huge times this morning and nothing since. Even my stomach is a bit better right now, for now.
Posted 5/31/2011 6:10 PM (GMT 0)
Try transdermal nicotine. I had great success. Within two days of nicotine therapy my bleeding stopped (I also continue taking my meds). I know you have inquired about the ecig, but I would do the patch until you are able to pick up the e-cig. Hope this helps.
Posted 6/1/2011 4:02 AM (GMT 0)
I'd pass on the nicotine....

But I would have no qualms about taking a half imodium or even one that day.

Are you taking any fibre supplements?

q
Posted 6/1/2011 11:06 AM (GMT 0)
I am taking no fiber. As the day progressed I felt better. I did a Rowasa last night and this morning have gone 3 times explosive, mucos , water and blood. Is this normal for Rowasa I see some people say after Rowasa they have many BMS in the am and are done for the day.

I plan on an Immodium for the trip. Oh, called my GI yesterday she has YET to call me back.
Posted 6/1/2011 3:34 PM (GMT 0)
It's normal what you're experiencing with a flare. I have the same thing even if I start the enemas. Sometimes I'll have it for up to a week and my flares are minimal.

Try not to make a determination at this point or stop the enemas. Maybe after 2 weeks if you worsen...OK, it's the enemas...maybe.

q
Posted 6/1/2011 5:30 PM (GMT 0)
Thanks Q,

A really nice nurse from the Dr. office called and said the Rowasa is causing the huge evacuation in the mornings. She said to stay on it. Hopefully the blood will stop as the Rowasa starts helping the inflammation. She also told me to take an Immodium for the car ride if I feel the need to take something.

Wish me luck!! I will report from the road! lol
Posted 6/2/2011 9:23 AM (GMT 0)
Hope all goes well....looking forward to your report!

q
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