Re: Remicade vs colon removal?

[Guest guest]

Hi Debbi,

I was faced with this question late in 2007, after 15 years of living

with colitis. My colitis became unresponsive to any conventional

medical therapy (imuran, prednisolone etc....you name it I tried it).

The prednisolone in particulare was becoming troublesome - 18 months

of high dose corticosteroids (50mg +) had produced some pretty serious

side effects and I was unable to reduce the dose or the colitis would

flare pretty severely.

I decided to try the Remicade (its called Infliximab here in

Australia) as a last resort, after doing a lot of reading. From

memory, there are 2 published randomised controlled trials of remicade

in UC. Both demonstrated short-term improvement of symptoms in about

70% of people in the 'active' condition (ie, receiving remicade),

which were good odds, I thought. Unfortunately it did nothing for me,

and I ended up having the colectomy in late January, after a difficult

christmas break.

I wont pretend the surgery was fun, but I have been surprised at how

well I now feel (despite deteriorating PSC) compared to 12 months ago,

and how easy the ileostomy is to manage. In 7 weeks I am going back in

to have the restorative j-pouch surgery and then in late November

(fingers crossed) the ileostomy takedown. Life after all this wont be

'normal'. On average, people who have had this surgery visit the

toilet about 6 times a day and once at night. There is a wide

variation in these outcomes, and some unlucky people may still need to

visit the toilet 15 to 20 times a day. No promises, I suppose. But for

me the important thing is control. Prior to the surgery I had no

control and this resulted in numerous very embarassing situations,

particularly at work. I am looking forward to having that control back

later this year, and also not having an ileostomy.

There is a chance that the ileostomy may be permanent, and the risks

of the restorative operation are small but potentially significant,

especially for men of my age (33) who want to start a family (a few

percent of cases lose the ability to have an erection). Despite all of

that, I wouldnt go back. I am quite happy no longer having the organ

that was causing me to become so ill, and my quality of life has

improved markedly.

Here is a link to one of the papers I read on this that was really

useful in helping make a decision:

http://www.ncbi.nlm.nih.gov/pubmed/14501509

Anyway, hope that helps.

Regards,

.

>

> Hi everyone!

>

> Have not posted in a loong time, just lurking now and then. I have a

> decision to make and I am tossed.

>

> Just an update first; I am 3 yrs post trans. and about 1 1/2 yrs.

> after trans. my colitis started to flair. I have been on prednisone

> and sulfazalazine plus imuran to try to settle it down.

>

> Nothing seems to work and I'm having a terrible time with the

> uurgentcy issue (if ya know what I mean). Well I've had enough and

> have asked if they would be willing to try Remicade., both my Dr.'s

> have agreed.

>

> I had to see a Respiroligist 1st because all my TB test are always

> positive and he put me on INH pills to prevent the disease if it

> decided to invade my lungs while on the Remicade.

>

> The problem I'm having is I've had colitis for over 20 yrs now and

> have had 1 pre cancerous biopsy and am worried I'll go thru all the

> infusions and still end up with colon cancer or do I just protect

> myself and have the surgery now?

>

> I'm finding it hard to decide because mentally I don't think I'm

> ready for another major surgery so soon and don't know if I could

> handle not having my colon.

>

> What I'm looking for is some 1st hand knowledge from people who've

> been there done that and others who's opinion I would aprreciate.

>

> Thanks for listening

>

> Debbi B.

>