Slowing down ileostomy out

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Jan625
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Date Joined Feb 2008
Total Posts : 115
   Posted 3/5/2008 11:37 PM (GMT -7)   
Has angone ever head of a shot you take once a month that can slow down your out put for a whole month?

The GI Doctor I'm going to tomorrow told my GP there was such a shot. Will let you know what I find out.

vette guy
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Date Joined Nov 2006
Total Posts : 650
   Posted 3/6/2008 12:58 AM (GMT -7)   
I never heard of it. What's the real advantage of it? I would imagine that it would make your ileostomy less predictable, plus eventually everything's comin' out anyway.

Shaz032
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Date Joined Feb 2003
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   Posted 3/6/2008 5:05 AM (GMT -7)   
I've heard of Sandostatin - but you have to give yourself a shot of that every day. It's for people whose ileo output is really copious and watery and who dehydrate very easily though all the time though. It's not something to be taken lightly.
I have had an ileostomy for 32 years now due to UC.
 
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Jan625
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Date Joined Feb 2008
Total Posts : 115
   Posted 3/6/2008 9:56 AM (GMT -7)   
This is Bob625, her husband. She gets dehydrated quite easily and is in the hospital once a week getting rehydrated. It would appear that once her hydration starts going downhill, drinking electrolyte fluids, or anything else for that matter, neither stems or even slows the dehydration spiral. Her doctor was talking to the only GE specialist in the area yesterday, and the specialist mentioned the shot.

Indabag
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Date Joined Aug 2007
Total Posts : 254
   Posted 3/6/2008 11:42 AM (GMT -7)   
Hi Bob:

I never heard ofa once a month shot. I think Jan & I have the same problem. We have "spoke" in the past and I told her I have a PICC line in order to take an IV every day. Yeah, I feel great now but I know this is no long term solution. I think I am different, though, because I have had extensive surgery other than on my intestines. I only have 1/3 of my original pancreas and I had my gall bladder removed along with several resections. My GI doctor "blames" my fast output on these issues. Did Jan have any surgeries like mine?

I am going to call my GI doc today and see if I can get an answer about the once a month shot and Sandostatin. I will post if I get a reply from her.

I think the important thing is to get hydrated ASAP and keep it up even if it means doing an IV at home with an angiocath or PICC line. Dehydration can bring you down real quick, but, the good thing is, you feel better almost as soon as you are rehydrated.

I hope Jan feels better soon.

Richard
Indabag
 
Ileostomy since August 2005.
As result of surgery (modified whipple) for necrotising pancreatitis. Removal of gallbladder, 2/3 of pancreas, resections of large and small intestines. Massive infection. 8 months in ICU at Westchester County M.C. (I think that's a record). Second surgery for resection due to fistulas in January 2007. Been slowly recovering since then. Possible reconnection candidate.


peggy113
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Date Joined Aug 2007
Total Posts : 1998
   Posted 3/6/2008 4:41 PM (GMT -7)   
Interesting ... Richard, let us know what you find out. I'm curious, tho I don't need it now. Good info to tuck away tho.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Jan625
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Date Joined Feb 2008
Total Posts : 115
   Posted 3/6/2008 7:15 PM (GMT -7)   
This is Bob625.  Took Jan to GI doc today.  He says the shot costs $600 a pop.  Talk about heart failure.  And it ain't necessarily once a month.  You may need it once a day.  If your doc mentions the Sandostatin shot to you run for the nearest exit.  He readily agreed you could spend tens of thousands of dollars on this treatment.  Gasp, gasp!  Where's my nitro pills?

Shaz032
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Date Joined Feb 2003
Total Posts : 1250
   Posted 3/7/2008 3:36 AM (GMT -7)   
Yes, the cost is the BIG drawback to Sandostatin for people in the US. A friend of mine in the US had a real fight to get her insurance to pay for it for her but she eventually won it on a trial basis (they agreed it would probably be cheaper to pay for the daily shot rather than pay for her frequent hospital visits for dehydration). Thankfully, so far, it's working for her.


I have had an ileostomy for 32 years now due to UC.
 
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Jan625
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Date Joined Feb 2008
Total Posts : 115
   Posted 3/7/2008 9:07 PM (GMT -7)   
Shazo32

I went to the GI doctor yesterday and I'm going to have more test. He told me some about the shot Sandostation. You are right it cost alot and would have to foght your insurance to pay for it.

Do you know what it dose for ileostomy output? I really have trouble with dehyration because of high output. I have to have IVs two or three times a week.

Jan,

Shaz032
Forum Moderator


Date Joined Feb 2003
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   Posted 3/8/2008 8:33 PM (GMT -7)   
Jan

For my friend it has slowed down her output substantially and she hasn't had any hospital admissions due to dehydration since starting it. She's been on it 6 months now approx but feels that it's now not doing as good a job as it used to :( so I'm hoping it's not something that you build up a tolerance to, for her sake.
I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


Shaz032
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Date Joined Feb 2003
Total Posts : 1250
   Posted 3/13/2008 5:07 AM (GMT -7)   
Just found out there is a long lasting shot you can get as well. It is a bi weekly or Monthly shot. This is the Octreotide LA (long acting). For some, this works well. I would speak to your doc and your insurance company about it.
I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


Eva Lou
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Date Joined Sep 2006
Total Posts : 3437
   Posted 3/13/2008 7:03 AM (GMT -7)   
is this a common occurence? the dehydration? I hope not- I'm a little freaked out, to be honest! I hope Jan is doing ok.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


nenagirl
Regular Member


Date Joined Nov 2005
Total Posts : 138
   Posted 6/5/2008 8:27 PM (GMT -7)   

Hi - bumping this back up.  I had a Dr. visit w/GI today and he prescribed octreotide....the generic of Sandostatin.  The plan is for me to get the drug and go back to see RN to teach me how to properly inject it (Dr. didn't mention the cost).  In the meantime, the pharmacy called and the insurance company needs to get more info from Dr. before they'll cover it (IF they cover it, I'm thinking).  I had a proctocolectomy w/ileostomy in 2005 and in 1997 a sub-total colectomy w/anastamosis (sp?) where they also removed gall bladder.  The first surgery removed most of colon and 40% of ileum.  Second surgery took another 15 cm of ileum leaving me w/an "almost" jejunostomy (Dr.'s words).  I haven't had a hospitalization in a while but generally feel crappy because I can't maintain proper electrolyte levels on a regular basis (flutuates from day to day or as I say, hour to hour) and other issues w/absorption of nutrients.....not much quality of life.  The next thing w/be for me to go to hospital on a regular basis to get IV fluids (or do the PICC line).  I am hoping the insurance co. weighs this cost against that of trying to maintain at home w/the drug.  Pharmacist said the generic is US$1700.00 (I think this is per month/2 shots per day).  I hope this won't be like pulling teeth.....don't feel up to that.  Thanks for letting me offer my experience!

  

ng   


Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 6/6/2008 5:22 PM (GMT -7)   
Hi There,
Just wanted you to know that I checked out the shots your talking about a few months ago with my Dr. and he said there were alot of side effects that goes along with the shot that he was worried about.
I did call my insurance about the shot and told me that they would't pay for it as it was cheaper for them for me to go to the hospital. They don't care about the person or what we may need. They just don't want to pay for anything that thay don't have ,too.
My insurance isn't verry good as they don't pay the hospital what they ask. Kind of think all insurance is that way anymore.
I know the shot cost big bucks and there is no way that we could pay for them.
This isn't much help. But please let me know more about what your Dr. told you about the shots.
Let me here from you, Jan

nenagirl
Regular Member


Date Joined Nov 2005
Total Posts : 138
   Posted 6/6/2008 10:47 PM (GMT -7)   

Hi Jan - I called my insurance company today and they said Dr. needs to fill out a form that explains in more detail why he wants me to try this.  If it is approved, my co-pay would be $10.00 (actual cost $1700.00/month, I think) as it is generic and $10.00 is my co-pay for any generic drug.  When I spoke to Dr. at my appt. Thurs. (June 5, 2008) we looked up info on his laptop.  There are some concerns w/interactions w/other drugs but looks like I'm o.k. there.  We also went over the side effects....I generally tolerate meds well (except sulfas) so I want to at least try it and see.  If side effects are too much, then I won't continue.  My Dr. has 2 other patients who use octreotide (for various reasons) and it has been a godsend for them....he said he really thinks this may help me.....we have been working on this for 2 plus years!  This is something of a last resort before PICC line or "hooking" up at night to replenish electrolytes.  Will keep you posted as things move along.  Thanks for your input and interest.

 

ng


nenagirl
Regular Member


Date Joined Nov 2005
Total Posts : 138
   Posted 6/13/2008 1:15 AM (GMT -7)   

Jan - if you're still interested - I got a letter yesterday stating that my insurance company has approved my Rx for octreotide...in 30 day refill incremets only.  They (ins. co.), after receiving pre-authorization info, required the pharmacy to buy the generic drug from a supplier whose retail price was $1,437.09/30 day supply rather than the submitted $1,700.00 retail price from another manufacturer  Pharmacy said o.k.  Since they approved this generic drug, my co-pay is $10.00 (just as any other generic drug) as per my RX coverage formulary. I have picked up the Rx,  just have to call the nurse to set up appt. to learn how to do injections and get other pertinent info.  Don't know if you want this info, but as you stated previously, you wanted to hear from me, so this is the info I have so far.  Thanks for your interest.

ng 


summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 6/14/2008 8:07 AM (GMT -7)   
nenagirl-when i was still sick my iron level kept dropping, all the time, and my dr prescibed chromagen (sp?) it is an iron pill that is released a certain way so that it doesn't upset your stomach as much. however, because it is expensive and considered a vitamin, my insurance wasn't going ot pay for it. So my dr called someone at my insurance company and explained the situation to them, they still didnt' want to do it, so he said, you can either pay for this, or you can pay for blood transfusions and hospitla stays every other week! a little dramatic, but it worked!
that may be the best thing for yourdr to try, a little scare tactic, lol

nenagirl
Regular Member


Date Joined Nov 2005
Total Posts : 138
   Posted 6/14/2008 9:55 AM (GMT -7)   
Hi summerstorm - thanks for your input.  So far iron deficiency hasn't been a problem for me.  Magnesium, however, is a problem.  I had the same situation where magnesium is not a prescribed drug, it can be purchased over the counter...and because of that insurance wouldn't pay (even though Dr. wrote it out as a script).  Thank goodness it isn't an expensive med, for the dosage I take, it costs about US$18.00/month.  I will keep the "strong arm" tactic in mind, though, it may come in handy in the future!!
mj
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