A question for you long time ostamates

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Dave D
Regular Member


Date Joined Aug 2005
Total Posts : 404
   Posted 7/8/2011 4:00 PM (GMT -6)   

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


Alibee
Regular Member


Date Joined Oct 2010
Total Posts : 286
   Posted 7/8/2011 9:54 PM (GMT -6)   
Hi Dave - I do not currently have an ostomy but I have been coming to this site for a while now getting informed about everything because a colectomy may be in my future. From what I have read from everyone on here, output almost always slows down. It may take longer for you because you had such high output from the getgo...I am sure you will get a lot of answers about that on here because there are so many great people with great experience...

However, I do have some tips for your medicare situation - the same thing happened to my neighbor, he was denied coverage for a very expensive medical treatment, but he had some luck appealing it.
Here is a website with a lot of helpful information as far as what your options are if you are denied claims, and it helps you figure out what you should do if that ever happens.
http://www.medicareinteractive.org/page2.php?topic=counselor&page=script&slide_id=1262#top

Ali

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 7/9/2011 7:41 AM (GMT -6)   
Hi Dave,
I'm not an expert in this dept but I have had an ileostomy now for just over 2 years and yes it does slow down substantially, however it also depends a lot on what you eat as to how fast it goes through you. For example I ate a small bag of grapes the other day while at work and my bag kept filling up so fast that I had to dash off to the toilet almost every ten minutes so I have learned that if I want some grapes not to have too many as it did cause problems for me. To thicken up you output and slow it down I take some imodium tablets, those you should be able to buy over the counter, but check with your doc that they will be ok for you too, as I am no doctor. Things like pasta, potatoes, bananas will thicken it up and take a bit longer to go through, well for me it does. I have found its been a lot of trial and error and still have a lot to learn myself, but I hope this helps some what. The medical system here in Australia is pretty good as those drugs you mentioned would be given through our public health system for very little money. I am on humira and methotrexate injections each week and the cost of the humira alone is 1,775 dollars for the 2 injections I get in the pack and I only have to pay 5.40 for them. If you have any other questions feel free to ask away and I'm sure someone else will be along soon to give you some more advice. Good Luck and take care
Doreen

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 7/9/2011 12:30 PM (GMT -6)   
I have a high output stoma as not much bowel left and colon removed long ago. I take immodium, 2 capsules 3 times a day and also codeine for pain but this also slows bowel down and GI told me to up the codeine to 3 times a day to help slow things when I only used to take it twice a day.

So you could try those as they are cheap and with the immodium I found it takes couple of days to be effective on me so this is why I take it regularly now every day.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

Dave D
Regular Member


Date Joined Aug 2005
Total Posts : 404
   Posted 7/9/2011 3:26 PM (GMT -6)   
Thanks Stripey.We have talked before. Last Sunday after emptying 10 bags. I saved myself with 2 Vicadins, my last resort after the Sandostatin, Questran, Immodium(8), and Lomotil (8). Vicadin is an Opiate with Acetaphedamine, That is probably my best bet for now. In the past I have taken Tinctures of Opium but it is terible tasteing and sometimes makes me vomit which would be my undoing now.
Again, how old is yourileostomy?
Dave

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/9/2011 9:27 PM (GMT -6)   
i've had mine for four years now, and my output isn't really high, unless i eat certain things. Like if i eat applesauce i will have like 2 filled bags in no time.
i do think it will slow down, i remember mine slowed down for over a year.
What do you eat? that could be a big thing, and especially what do you drink?
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 7/10/2011 7:56 AM (GMT -6)   
I have had my ileo for nearly 20 years but have had various surgeries since it was first done, 2 abbcesses which resulted in it being resited twice and also strictures so am now in situation of not having much small bowel left anymore which doesn't help with absorbtion and nutrition, hence why I need to eat 4000 calories a day to maintain my body weight and why I take immodium and codeine to slow things down otherwise I would be emptying it 15 times a day on a good day and when I had CD flare recently was emptying over 30 times a day. Not good for sleep, hydration or nutrition and am currently battling low potassium from it.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.
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