Anyone on/been on injectable med Octreotide for heavy output

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Calico

I've been having nothing but water in my ileostomy bag for 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 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 20 times during the day, and 5-6 at night.

So last week, my Dr. put me 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 meantime, I was wondering 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 malnourished, no more hospital stays. I've already been admitted 3 times in the last 2 months.

Calico

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domingo

Hello Calico, I had the same problem back in 2007. I started on tincture of Opium. It slows the bowel movements down. I have not had any problems since. I took Opium for 1 year with minor side effects.

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vollovr

Hi,
How long have you had an ileostomy and do you know how much bowel was removed? I have had my colon and a lot of small bowel removed, so because of short bowel, I have a high and frequent output. I take codeine 20-30 minutes before each meal, and that slows me down to a more normal output. I have taken this for 20 years or so. I HATE taking it, but it is the only thing that works. RC

Calico

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. 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) within 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 through 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 hour for Social Security to see if I'm "sick enough" to get my benefits reinstated, and I just got out of ICU from cardiac arrest 2 days ago (oh yeah, 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 advice. 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 (as 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 pus coming out of it!



Ok, off to the Dr.

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