HealingWell
Search Close Search
☰

Vent!! and request for help

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/26/2008 9:16 PM (GMT 0)
Ok, I apologise in advance but I'm getting to the end of my teather!

To cut a long story short - diagnosed over 2 years ago with Ulcerative Proctitis.... (latest scope Oct 2008)

I've never had more than 4 weeks without pred.....

I'm FLARING yet again!...........

Trying with the Predfoam and Pentasa suppository, but the flare is winning......  contacted my consultant and what was his answer - Pred Pred Pred, but I refuse to take it!

What can I do people, i'm really feeling down and low, will I ever get a break? I just don't want to take the pred yet again!

Why is nothing working for me, why? ( I really thought the Imuran would help, but alas.....no)

How can 15-20cm cause so so so much trouble??

Thanks for listening - again

Craig

Posted 12/26/2008 9:21 PM (GMT 0)
Hi...it seems for some of us, UC limited to the rectum can be more of a pain to treat than when it's higher up.

Curious...what exactly are your symptoms?

q
Posted 12/26/2008 9:27 PM (GMT 0)

Hi Quincy,

The usual with me, constipation, white knucklers, blood, mucus, tenesmus.

It also seems to be afecting me mentaly now, more than ever, despite the anti-depressants

:(

Craig

Posted 12/26/2008 9:40 PM (GMT 0)
     I also have ulcerative proctitis and yes, it sure is painful.  Right now I am in remission, but I suffered a seven month flare this year.  I can understand how you feel about prednisone.  I hate taking it too, but it is the ONLY drug which helps me into remission.   I had to take 40 mgm for one week, then down to 30 mgm for a week, 20 mgm the next week until I reached 10 mgm, then I lowered to 5 mgm for a week and finally reached remission.  Whenever the doctor started me at 30 mgm, it just didn't cut it...boom, flared within two weeks of weaning.  I suppose the prednisone along with the 6MP, cort enemas and Colazal worked finally!
Posted 12/26/2008 10:57 PM (GMT 0)
Craig...yeah, that describes mine as of late...

I would suggest you get back on a rectal med...if you can do Rowasa..try that firstly and stay on it.

Constipation is classic for UP.

Ask the doc for an antispasmodic..I use dicyclomine..

I can truly relate to the emotional side of having UC flares that aren't responding quickly.

You don't have to go on pred if you don't want to...I would strongly advise the 5ASA retention enemas firstly, and if they start to work..stay on them till you're feeling normal and then taper to a maintenance dosage...

quincy
Posted 12/27/2008 9:51 PM (GMT 0)
I understand why you don't want to be on prednisone. I've been on 40mg for over a year, and finally down to 20. However, it makes me a little better. I would much rather go with the swollen face and side effects of the prednisone over my pancolitis. I do not get better with medications either, and we're opting for surgery. I'm tired of being sick and I am definitely tired of the prednisone. It has caused more troubles for me than many would like to know.

I do wish you luck. I know prednisone is the devil's advocate. Have you attempted to alter your nutrition for a week or so? After switching to rice milk, and having no carbs, red meat or fried foods I can tell a difference in my pain and discomfort. It does take me about a week or more before I start noticing the change, but it's worth it when my UC is super bad. I was dx almost 2 years ago and have yet to be in remission, but I do understand the constant discomfort and frustration!

: ) Robin
Posted 12/27/2008 10:19 PM (GMT 0)
Proctosigmoiditis can be absolutely awful. I was in constant flare for the first four and a half years after diagnosis. I was on steroids the majority of the time, but even they didn't help much after the first six months. I was on the verge of seeing a surgeon when I finally got into remission.

I have never been able to see any changes related to supplements (other than probiotics) or diet. I wish you luck and hope you soon find a solution that helps you.
Posted 12/28/2008 5:09 PM (GMT 0)
Thanks everyone, some interesting stories, it's nice just knowing you're not alone!

Craig
✚ New Topic ✚ Reply