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Crohn's and Multiple Sclerosis

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Crohn's Disease
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Posted 4/30/2009 5:27 PM (GMT 0)

Hi,

I am 31 and was diagnosed in 2000 with MS.  Then in 2002-2003 I was diagnosed with Crohn's.  I was doing well for a while and then had a wonderful daughter in 2007 (off all medications for everything).  I have had issues with my Crohn's since the end of last year and they can't get it under control.  Because of my MS it limits the medication I can take for Crohn's (no Remicade or others like it).  So with Immuran not working for me anymore (like it did before I had my daughter) they said Tysabri was my last form of medication they can treat me with.  I want to know if anyone else out there has both Crohn's and MS and how are you being treated.  Also, if anyone takes Tysabri for Crohn's and how it's helped? 

Right now my daughter is almost 26 months and is an absolute outdoors person.  I just feel so bad because most of the time I have to send her father and her on their way to go play because I don't feel comfortable leaving the house (need to be by a bathroom at all times).  Sometimes I even have issues making my 10-15 minute ride into work without finding somewhere to stop. 

Crohn's and MS

Posted 4/30/2009 6:29 PM (GMT 0)

Welcome to the forum. Sorry I can't help.  I do have two friends with Crohn's in which one has a husband with MS and the other's husband just started chemo for bowel cancer. I know the stress does not help with the Crohn's but they are handling it.

Good luck in finding some answers and something that works for you.

Posted 4/30/2009 8:08 PM (GMT 0)
I have to ask can you take injectable mtx?
Posted 5/1/2009 12:30 PM (GMT 0)
I am sorry I do not have anything medically to help you, however I want to send you and yours best wishes! As far as being outside with your little lady goes....is your yard fenced in or anything that you could place a sandbox by the door and hear her while you go into the bathroom? Also, there are lots of little garden sets on the market (it would be cheaper to make your own :)) to let her do planting and such indoors and set it out when she is done working for the day on it.
Posted 5/1/2009 2:32 PM (GMT 0)

She knows the difference between outdoors and not.  One of her first words was "outside".  One of her favorite things it to ride her bike (and when I say ride I mean she likes to go all over the neighborhood).  Or she likes a park at the end of our road but unfortunately it doesn't have a bathroom.  She has always been able to go because I have not had issues until this past winter when we weren't out side very much.  Now that it's warming up she wants to be out from sun up to sun set.  It's just hard to tell her no she can't go somewhere when we have been able to do it in the past - she doesn't understand why we can't now.

Katie

Posted 5/1/2009 4:23 PM (GMT 0)
Hi Crohns & MS, welcome! One thought for you for medication might be LDN (low dose naltrexone). It has been used extensively now "off label" for treatment of MS, and is also currently in phase II (maybe phase III now?) trials for Crohn's disease. Here is a general information website:

www.lowdosenaltrexone.org

If you want to "talk" with people who are using LDN for both their MS and/or Crohn's, you can go to yahoo and sign up for the LDN users' group. They are extremely knowledgeable there and can help you with any question you might have. I'm quite sure you will find others there with both diseases, as well. Best wishes!
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