Experiences with Octreotide for High Output Ileostomy?

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Calico
Oct 21, 2013 6:11 pm
I've been having nothing but water in my ileostomy bag probably over 8 months now, and lately it's so bad that I'm not even sleeping at all because my bag is filling up so fast, like every 30-45 minutes, if I'm lucky I get an hour. But by an hour it's so full I can't hardly open it, it just "explodes". So just before I went to my GI Dr. I started keeping track of how many times a day I was emptying it for about 3 days/nights, and it was 20x's during the day, and 5-6 at night.

So last week my Dr. put my on Octreotide injections, I haven't been able to start them yet, it took a little while to get the authorization for the meds, now that I have the meds they are saying I have to have a separate authorization  for the needles!  

So in the mean time, I was wandering if anyone else has had this problem and has used this medicine, and if it worked or not. I can't afford to stay this malnutritioned, no more hospital stays, I've already been admitted 3xs in the last 2 months.

Calico
domingo
Oct 21, 2013 6:57 pm
hello calico , I had the same problem back in 2007 , started on tincsure of Opium , it slow the bowel movements down . Have not had any problems since , took opium for 1 year , minor side effects .
Posted by: ejbetty

Geekyjen,

Thanks for the reply.  I will be seeing my doctor on Friday and mention Entyvio.  I did not remain paralyzed for more than 2 days, but it was terrible and I was so scared.  The doctors just used alot of xanax and other drugs like that to UN paralyze my joints that were being attacked by the remicade.  Turns out I have been diagnosed with LUPUS. It is attacking my nervous system.  I had ulcerative colitis in 1996 and they had to remove my colon.  Had a J pouch for 10 years, until it started failing.  I then got a permanent iliosomy, and I suffer from severe chronic diareha, and I dehydrate frequently.  I recently had a proctectomy, and that is when the new autoimmune disorder, Lupus, appeared.  I have had two hospital stays now because of the blisters and the paralyzing incident.  I will be dealing with this forever now.  I have just been working on acceptance.

I love this website because of wonderful people like you!

 

Betty

vollovr
Oct 30, 2013 9:19 pm
Hi,
  How long have you had an ileostomy and do you know how much bowel was removed? I have had my colon and alot of small bowel removed so because of short bowel I have a high and frequent output.I take codeine 20-30 mins before each meal and that slows me down to a more normal output.I have taken this for 20 yrs or so. I HATE taking it but it is the only thing that works.RC
Calico
Nov 01, 2013 7:43 pm
Thank you both for the responses, I just wanted to give a really quick update, I had a home healthcare nurse come over like the day after I put up this post and gave me the first injection, and the next day when she came to teach me how to do it, she found me in a very bad state, and I ended up in the hospital in Hypovolemic shock, an adrenal deficiency, a very enlarged liver, hypotension, tachycardia (heart rate 168), bradycardia (heart rate 20) with in minutes of each other, CT scan showed I had gas in my mesenteric vessel (which means I have a tear somewhere in my small intestine) I have lesions and ulcerations and a small hernia in my small intestine. I just spent 8 days in Cardiac ICU. (my surgeon consulted with me every day in the ICU but he's scared to touch me, so I just have to suffer, but to be honest, I'd rather live with this right now than go thru another surgery, I still have PTSD from my total colectomy)  I had my entire large intestine removed, left my rectum, and have all of my small bowel.

I have to go to the Dr. in an hr for Social Security to see if I'm "sick enough" to get my benefits reinstated, and I just got out ICU from cardiac arrest 2 days ago (oh ya, and they had to use the paddles on me, they have ones that just stick to your chest now so they don't have to do anything but shock you now. SCARY.

Thank you both again for the advise, my Dr. did mention trying the T of O, so we'll see. I'm already completely dehydrated, BP too low and heart rate in the 100's (soon as they took me off the fluids at the hospital, so I have to call my Dr. asap. Oh and not to mention my Central line got infected, when I got home and cleaned it there's green/yellow puss coming out of it!

Ok, off to the Dr.