I had my end ileo (permanent) done on 1/14/2011. I had gigantic output from the getgo passing 3 litres per day. My surgeon, gastro, and hematolgist put me on Sandostatin to slow the gut right away and now I get shots every 3 weeks. Sandosatin was designed for is a people with growth problems and people with cancer taking chemo causing massive diarrhea. I’m using it off label since I have such massive diarrhea and no longer any colin to absorb. Medicare has paid for 6 shots but my other hematologist/oncologist says that medicare will start denying my claims and he will get stuck with the bill @ $4,800 per shot, maybe even accumulatively So he refuses to give me anymore shots unless I agree to pay the $4,800 per shot if medicare does not. Remember, they come every 3 weeks so do the math. It makes me sick to even try. The drug company has an assistance plan but I have a good income but not so good as to afford this. We would probably have to sell our house to do it.
Finally, here is my question: Is my output likely to go down after my ileo ages a bit…….after a year or so or am I just plain screwed? I’m 73 and probably good for 10 more years so not much time to recover financially.
Anyone?
Dave D

My suspicion is that the denial would be based on the reality that there are a number of other, and far cheaper, drugs for controlling diarrhea. Since you say they put you on the Sandostain right off the bat, the coverage providers are probably justified in requiring you to have tried and failed all the other options before agreeing to this treatment long term.

Since some months have passed, it makes sense to start trying the other options, because, yes, it is typical for high output ileostomies to settle down over time. But, if you have short bowel syndrome, it may not. Still, it is possible that the other drugs will work. Narcotics may be a better solution for you.

Here is a link to an interesting case studyand report. Perhaps some of the options you have not tried?

Ileostomy diarrhea
Jan

This message has been edited. Last edited by: Jan Dollar,