New Here....need advice

[alysa]

Hi,

So, here is my story. I was diagnosed with UC - only in my rectum 3 years ago and only had mild symps. About a month ago- out of nowhere- I started having massive diar all day long (15 bms a daY!) and lost a ton of weight. Colonoscopy revealed that the diasese had spread to my entire colon (even though i had been on meds- at the time just taking colazal). Anyway, after not responding to entocort and then predisone (60 a day), I was hospitilazed for 5 days and put on IV steriods. Was doing much better in the hospital (just 1 bm a day). 2-3 days after I got home, urgency and pain started again. For the last week been going 3-4 times in the morning- need to spend over an hour in the bathroom. It is torture.But limited to the morning. I'm still on 60 mg of pred, 6 mp (just been a few weeks- so dont think that's working yet) and colazal. Does this mean that the pred is not working for me??? My dr thinks I should go back to the hospital. This has all been very diffucult- as I'm sure you all know. I have a 1 year and half year old and am own business and my life feels like it is being destroyed right now. I can hardly take care of my daughter bc my energy is so low and can't sleep at night. Does anyone have advice on what my next step should be. Should I go back to the hospital? Are there other options? What's to say I go back & come home again and still regress? please help....
thanks!

 

[Swirl]

You should try a Enema. I had a drug similar to predisone that was a enema and it seems to work but the side effects was too bad. So i take mesalamine enema and its working good. I have left sided colitis. Where do you go for treatment?
probiotic has worked for me. You should ask your doctor about it and try it.

 

[Lisa]

Hi Alysa..you should not let things get too bad before seeking treatment - or you will just end up sick longer - with possibly a longer hospital stay. I agree on the enema idea - that might target the problem better, if that is where the majority of hte problem is. 60mg of pred should be having an effect too....

What part of NY are you in? There are quite a few of us spread about here.....

 

[alysa]

Thanks for your replies. I'm near the city and have been to mt sinai.
Pred def not working. Feel even worse today. Looks like I'm going back to the hospital

 

[Cmk]

Ive been on up to 70mg of pred....just down to 40 now....i have bad UC as well...try the other stuff too, probiotics, enemas etc....so far REMICADE is the only relief ive had...ask your doctor. I am steroid resistant etc...Remicade so far, and im new to it has been a life saver and relief...I have 3 little boys, run a business and coach soccer etc....I can atleast go do things now without always being paranoid and worried about going before i leave and wondering if i am going to have to go while out!

 

[DAVI]

You need to go and see a Doctor I FOUGHT IT the dreaded CD and i was worse for not going to hospital straight away.Good luck....

 

[vonfunk]

I agree with everyone else. The enemas work pretty well for me. And talk to your doctor, I'm kind of like where I have a really hard time transitioning from IV steroids to pills.

 

[Swirl]

And I found out today how important water is, not having enough in you will cause you to feel tired. It helps your blood flow. I do need to drink more during the day. I had problems giving blood it seems because of this issue. Drinking enough might help you out.
I've been going about three/four times and only in the morning and my ulcers are limited to rectum area.