Experiences With Octreotide For High Output Ileostomy?

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 .

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Posted by: freedancer

In both of my cases, I had no choice. It was surgery or be put 6 feet under! I thank God that He has been with me all these times. Without Him, I never would have known what to do and might not have gone to the hospital when I did. I don't know if you have had your surgery or not yet but I hope you will hang out on this website when you are done. I have learned a great deal through the people here and it is so great having others who have had the same thing done and been through what you are about to or have gone through. The only thing I have turned down is a reversal of the ileostomy. When the doctors did the emergency rebuilding of my original ileostomy this last February, I told them I did not want to go through this again. My doctor told me at that time that I was no longer a candidate for the reversal. In a way, I was very relieved. The last three years of my life have been a nightmare for me. I do not want to go through any of it again. If you wish to be rehooked up and they say you are a good choice for that, research it carefully. Every surgery I have ever had except for Old and New Maxine and the emergency surgery on my broken foot, I have spent weeks researching. I recently had my C5 C6 disk in my neck replaced with an artificial one. I went to my pre-op with 2 pages of questions for the doctor. I knew everything that they were going to do and could talk intelligently with them. I always try to research my adversaries! Don't cancel your surgery. It is nice not to have to suffer any longer with horrible pain. We all had to change a few things around when we had our surgeries but in the long run, most of us are glad we did it. I know I am. Good luck to you!

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

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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.

Experiences with Octreotide for High Output Ileostomy?