Concerned about all the medicine

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linjussco
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Date Joined Jan 2009
Total Posts : 4
   Posted 1/13/2009 12:34 PM (GMT -7)   
My son has indeterminant colitis although they treat it like crohn's.  He is currently on Remicade every 8 weeks, 15mg methotrexate weekly, 2000mg pentasa daily, 500mg flagyl three times a day and Cipro twice a day.  Are there others out there on this much medication.  I don't want to argue with his doctors but I am worried about long term risks.  He already has osteoporosis.  They start him on two medicines at a time so who knows which one is working. I am very concerned.  Any advice would be helpful.

MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 1/13/2009 12:42 PM (GMT -7)   
oh yes there are others on those kind of meds. How old is your son? How long has he had colitis? (diagonsised) Is he having some infections? Is he taking anything for the osteoporosis?
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BeeSting
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Date Joined Nov 2008
Total Posts : 392
   Posted 1/13/2009 1:50 PM (GMT -7)   

I so understand that you are concerned about all the meds. Have you heard that there is a possibility to calm down IBD by reducing all sugar use, all carbo (wheat and so), and even change the diet totally. there are several good books at amazon.com writing about how to do this. Jini Palteson with her Listen to Your Gut, Elaine Gottschall with her Breaking the Vicious Cycle, and a third diet known as the Makers diet which you can google. I think the inventor is Jordan Rubin. We also have the mild medicine which many parents give their kids in combination with one of this diets, this medicine is called Low Dose Naltrexone, short: LDN, and is compounded from Naltrexone, or Revia, you can find more about it on ldninfo.org.

Those parents actually stops giving their kids the meds and gives them LDN instead, with great results. But I think it's necessary to combine LDN with a good diet.

I use this medicine and have combined it by avoiding sugar and wheat and increasing vegetables, fish, poultry and meat. I have never been using as much medicine as your son. Now my Crohns are behaving, and I can eat whatever I want, without getting sick. I have used LDN for more than a year, and all my symptoms gradually got away within 3 months.

Post Edited (BeeSting) : 1/13/2009 1:58:14 PM (GMT-7)


dangdonkey
Regular Member


Date Joined Jan 2009
Total Posts : 22
   Posted 1/13/2009 2:02 PM (GMT -7)   
A big concern to me as well.
Just had a doc visit yesterday. Back on the Antibiotics again, Flagyl and Cipro.
Just dropped them while in Hospital having a colostomy.
According to my doc I have tried every medication known to man kind and nothing seems to work.
Was on Remicade while in it's clinical trial stages, worked for about a year.
Also was on the Humira clinical trial, same result.
6MP, methotrexate, prednisone, entocort, lomotil, codeine, buscupan, flagyl, cipro, dilauded and the list goes on.
Honestly all these drugs cannot be good for us.
Some meds like Lomotil and codeine Ive been on for years. A major concern.
I don't suppose we will ever know what it does to us.

Brian

Ides
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Date Joined Nov 2003
Total Posts : 7077
   Posted 1/13/2009 5:15 PM (GMT -7)   
It would seem that once the remicade and MTX has had time to "work", that the docs could/would start eliminating the antibiotics and/or the Pentasa. The thing is that it is important to get the inflammation under control. Once his symptoms begin to abate, it seems that is when a reduction in medication can begin.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


linjussco
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Date Joined Jan 2009
Total Posts : 4
   Posted 1/13/2009 6:49 PM (GMT -7)   
Thanks for the replies.
He was diagnosed in 2005. He was 11y.o. He has never needed surgery, never had a fistula or an abcess. His doctors say they are going to eliminate meds when he is 6 months flare free. It seems that every six months he shows signs of a flare. Compared to other people he doesn't seem bad enough to warrent all those meds.
Beesting-- I would love to change his diet but he is unwilling. He is such a picky eater that he barely eats anything. The doctors even told him to drink a milkshake every day anything to boost up his calories. When he was on Peptamen AF (enteral feeds) I was so happy because he was finally getting nutrition. Unfortunately, specialized formulas are not covered by insurance and they are VERY expensive and since he can eat the doctors stopped it. I will definitely look up those books. Thanks

He takes Cacium and Vit. D for his osteoporosis. He is supposed to do weight bearing exercises but you try telling a 15 y.o. what to do! He is currently involved in a research study at CHOP called Healthy Vibrations. Hopefully the results turn out to help others.

Ides
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Date Joined Nov 2003
Total Posts : 7077
   Posted 1/13/2009 7:06 PM (GMT -7)   
If you believe that a reduction in the number of meds is warranted, then I would definitely make an appointment for a serious discussion with the doctor about the issue. You didn;t say how long he was on all these meds, but it sounds like more than a year. If it were ME taking all that, I would have had the discussion after the 6 month mark. What are his current symtpoms?
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


linjussco
New Member


Date Joined Jan 2009
Total Posts : 4
   Posted 1/14/2009 12:16 PM (GMT -7)   
He is symptom free.  He was having  some issues with stomachaches and diarrhea mid-November to mid-December that is when they started the antibiotics.  The other meds he has been on for a long time
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