SBS and Gattex

In this discussion
Replies
4
Views
1150
Tickpol

Does anyone on here use Gattex?

It's most typically used by folks with SBS to slow down the gut to improve absorption. It does encourage the growth of abnormal cells and cancers. Since I have inoperable prostate cancer, it's not something I'd do lightly.

It might be worth the risk if it works well, so I figured I'd ask here to see if anyone has any experience with it.

Dave

Gray Logo for MeetAnOstoMate

Why Join MeetAnOstoMate?

First off, this is a pretty cool site with 33,104 members. Get inside and you will see.

We're not all about ostomy. Everything is being discussed in the forums.

It's a very special community, embracing all ages and backgrounds. People are honest and truly care.

Privacy is very important - the website has many features that are only visible to members.

Create an account and you will be amazed.

w30bob

Hi Dave,

I researched it while I was on TPN, just in case I needed a little bit of help getting off that crap and still maintaining my weight. For me, the risks outweighed the benefits. There's just something (I can't put my finger on it) that I don't like about having my boobs grow down to my waist and my voice change to an octave higher that doesn't sit right with me. To be honest, those hormonal drugs just scare the crap out of me. Funny how that expression takes on a new meaning on a site like this. But it was also newer when I researched it a few years ago, so I'm sure there's more data available now than back then. The other thing is I'm not impressed with "temporary" fixes, meaning once you stop, the benefits go with it.......but don't take that to mean it doesn't make sense for others. My dietician and I talked about it many times, as she has a number of patients on it. I'd point you to her for advice, but she works for one of the infusion companies and I'm just not sure what she can tell a non-patient without getting into trouble. If you have specific questions, just shoot me a message and I'll talk to her and get you some answers. She's pretty cool about still dealing with me even though I've been off TPN a few years now. So if I can help, just let me know!!

Regards,

Bob

Gray Logo for MeetAnOstoMate
Tickpol

Bob,

I haven't found a single reference to suggest those hormonal changes as a side effect. Could you send me a link?

Thanks!

Dave

w30bob

Hi Dave,

I was being sarcastic... but you want to read section 14.1 in the Full Prescribing Information file (in header at very top of the page) that talks to the actual TPN reductions experienced during the clinical trials in SBS patients. With that, your dietician at your infusion company can determine if similar reductions for you get you over the hump and off TPN. I see they made major revisions to their data this past May, so what's presented is the newest data. I don't remember the "swelling and blocking of the stoma" side effect when I last reviewed this stuff, but like I said, that was a while ago... maybe I missed it.

https://www.gattex.com/important-safety-information/

Later,

Bob

Tickpol

I'm not on TPN so that's not an issue (yet). I've started dilating my stoma so swelling and blocking may not be an issue either. I don't have my gallbladder so that's not an issue either. At this point we're just playing "what if" games and my prostate cancer or high blood pressure might eliminate me as a candidate. It's all pretty preliminary at this point but I'm one of those folks who has to look stuff up. I know you get that.

Dave

 
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
All times are GMT - 5 Hours