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Crohn's Disease Forum » Treatment » My Stem Cell Journey


 
10-01-2012, 01:30 PM   #421
effdee
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Join Date: Oct 2010
Definitely leave the relevant medical parts of it up! I still give your blog to people who are interested in learning more.
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Stem Cell Transplant Blog
10-01-2012, 04:23 PM   #422
Ckt
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Join Date: Aug 2012
Location: Lexington, Kentucky
Thanks auntie me and mr soggy!i actually ended up being admitted to northwestern in a flare up so I'm waiting to hear about we're i go from here. They may want me to try combo therapy with humira and imuran/methotrexate/azothiprine first before consideration of the stem cell program.i have yet to meet dr Bennett but I probably will be meeting him tomorrow. I cannot say enough positive things about northwestern hospital,the gi team,and everyone here!it has been the best experience coming here and I am so grateful to be having this chance to be evaluated And seen by some of the best doctors!thsnks again mr ziggy and I'm happy to see you will be discerning about editing your posts/blog!
10-01-2012, 09:33 PM   #423
Ckt
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Join Date: Aug 2012
Location: Lexington, Kentucky
Haha!i meant mr ziggy!!autocorrect sucks!!(:
10-01-2012, 10:09 PM   #424
Guest9283
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Join Date: May 2010
Lol too funny

They probably want you to try that combo meds so that you will have a better chance at insurance approval once sumbitted. If they do want you to try the humira combo, be sure to ask them - what is the minimum time frame you have to give it in order to rule it out as none effective? Hopefully just a couple months. I hate having to jump through insurance hoops. But who knows maybe that combo will give you relief!?
10-02-2012, 11:38 AM   #425
Ckt
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Join Date: Aug 2012
Location: Lexington, Kentucky
That's a good idea!i am sure they will have me doing the combo treatment first although dr Barrett understood my reluctance as other treatments may work for a brief time then a big fizzle! I am beyond impressed at how quickly they got me into the initial evaluation..I am having an mre today(10/2)and a scope tomorrow.thsnks beyond words to you mr ziggy as it all started by reading this blog of your experiences!!
10-02-2012, 12:10 PM   #426
AuntieEm
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Join Date: Sep 2012
Location: Lebo, Kansas

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I can't wait to follow your progress ckt!
Shall we say... Batter UP!
10-28-2012, 11:01 PM   #427
tichard
 
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Join Date: Oct 2012
Location: Chapin, South Carolina
[
Results?
=Mr. Ziggy;191623]To introduce myself, I am a 25yr old male who has had crohn's disease since the age of 12. I am doing an autogulous stem cell transplant, and will be blogging about it.[/QUOTE]
10-29-2012, 12:28 PM   #428
Guest9283
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Join Date: May 2010
[
Results?
=Mr. Ziggy;191623]To introduce myself, I am a 25yr old male who has had crohn's disease since the age of 12. I am doing an autogulous stem cell transplant, and will be blogging about it.
[/QUOTE]

Lol. If you read more than the first post, it would be helpful. I don't really have time to read and find it for you. But it's there! Start from the back (the end).......
12-22-2012, 06:05 AM   #429
brunotheannoying
 
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Join Date: Dec 2012
Mr.ziggy It's great to here the success you have had with the treament! Having read the whole posts you made from start to finish, was just wondering how have you been to date? love to here from you on your current condition! Good luck!
03-11-2013, 01:45 PM   #430
daliac51
 
Join Date: Nov 2012
Guest9283,

Are you getting or got the Mesenchymal Stem Cell ??

Sure pray you are doing well.
Mig
03-12-2013, 04:50 AM   #431
Avw
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Join Date: Jun 2012
Location: Lafayette, Louisiana

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Where are you having the autologous transplant done? Dr. Burt isn't doing those anymore. Asking out of curiosity.... Still fighting insure and none of my siblings were a match. Been looking in the cord blood registry but I have a feeling I won't have two full HLA matches.
__________________
Diagnosed with CD in 2004 at age 18.

Previous Medications:
Every oral medication,
Remicade,
Humira,
Cimzia, etc..

Currently Taking:
LDN 3 mg
VSL #3
Prednisone 10 mg
Flagyl 1000 mg
Entocort
Protonix
Xanax as needed

Insurance still rejecting appeals for Stem Cell Transplant. Tested positive for JCV Antibody so Tysabri is not an option. Searching for matches in Cord Blood Registry and working with an attorney to fight insurance company. Fingers and toes crossed!
02-13-2014, 05:17 PM   #432
Farrah
 
Join Date: Feb 2014
You don't need two HLA matches to participate in Dr. Burt's allogeneic bone marrow transplant anymore. Only one is sufficient.
07-17-2014, 05:08 PM   #433
Maggieham
 
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Join Date: Sep 2013
Location: Aylmer, Quebec
Hi

I'm still reading your blog and thank you so much. I've been through so much in the past 6 months with Crohn's (pancreatitis, kidney stones, cryptogenic organizing pneumonia, entocort, imuran, remicade, prednisone, and the list goes on). I am home tonight, with a list from the Gastroenterologist of other possibilities. Stem cell treatment isn't on there .... Thank you again for your blog, sharing your story, your positive attitude and being open to questions. I don't where I go from here but at least I have another idea and another hopeful road to look down. For now, lung issues trump gut issues, so I guess its just research time until its time for action.

Maggie

Last edited by Maggieham; 07-17-2014 at 05:09 PM. Reason: spelling
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