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


 
10-25-2010, 02:48 PM   #301
DustyKat
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This Wednesday!..............Have a safe trip Zig!!!

I will be thinking about you Zig and sending truck loads of positive thoughts your way............................



All the very best,
Dusty
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10-25-2010, 03:19 PM   #302
Zoodles
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Your thread is actually how I found this forum. Thanks so much for sharing your journey.
10-26-2010, 04:40 AM   #303
Dexky
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Hey Zig, thanks for the continued updates!! I'm looking forward to good news from your upcoming check-up!! Have a safe trip!!
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EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
10-27-2010, 03:09 PM   #304
Stacyface
 
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Hello Mr. Ziggy:
I have been quietly following your journey for two months now. Dan.. a.k.a. acg101..referred us to the forum and enlightened us on your journey. I can only add that, like most people here, I am in awe of your courage and fortitude. I am equally amazed at your maturity but I am getting the feeling this disease tends to do that to those who suffer from the time they are young. Your positivity is amazing and I applaud you for all your efforts. Truly, from the bottom of my heart, you are so greatly appreciated and loved for all you do. Also, I first wanted to wish you all good things as your embark upon the final stages of your journey. If I am correct, you are leaving for Chicago today. I am confident the news after your procedure with be all positive. Secondly, I wanted to let you know I phoned Dr. Burt's office on Monday after reading your last post. I had printed out your blog some time ago which listed his phone number and directions to speak with Paula (unfortunately she is out of the office until November 5th). They are sending their information packet. My son, RJ, is 16 and you have been the only posts I was able to get him to read on this entire forum! I am hoping that maybe in the future he can contact you or PM you in the hopes of some encouragement. We have been through an ordeal in the last year and a very long list of meds. As I write he is home from school (his 12th day missed since September 9th) and he is nowhere close to being able to return. He missed nearly all his sophomore year of high school last year, and was hospitalized 5 times with his first time lasting 7 weeks! This Friday we have an appointment with a surgeon to discuss a possible temporary illeostomoy in the hopes of buying time and finding a new plan. I first have to clarify wether this would eliminate him from HSCT.

Please continue to keep us in the loop. I don't think I speak for myself when I say we anxiously await your GOOD news.

God's speed.
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-Best,
Stacy (RJ's Mom)


RJ: Age 16
Dx Dec 2009: Indeterminate Colitis/UC?
Dx June 2010: CD after surgery for abccess
Current Meds: Cimzia ; Methotrexate 25mg; Prednisone 15 mg tapering; Flagyl; Cortifoam
Previous Meds: Remicade, Humira, Cipro; Unisyn, Vancomycin, Pentasa, Canasa Suppositories
Starting: LDN; Entocort
Supplements: Vit D, Fish Oil, Flaxseed Oil, Multi Vit, Liquid Cal, Mag, Zinc,Iron, VSL#3; Folic Acid; B12; Calcium Gummies
10-27-2010, 03:33 PM   #305
Dras
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Dink aan jou Zig!!! Lol, hope you get that.
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Currently taking:
6mg Entocort
16mg Methylprednisolone
50mg Azapress
10-28-2010, 04:12 AM   #306
winemaker
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Man, I just read about your inspiring journey Ziggy.
You've earned hero status amongst us mate!
Hope all is going well and hopefully you've beaten this hideous disease!

Ziggy, the pioneer of a new frontier!
10-28-2010, 05:50 AM   #307
mollysmom
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Hope the scope proved it worked and no inflammation - cannot wait to hear the good news!!! praying it's all good!
11-03-2010, 11:02 AM   #308
Guest9283
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.....

Last edited by Guest9283; 09-24-2012 at 02:15 PM.
11-03-2010, 11:07 AM   #309
Guest9283
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....

Last edited by Guest9283; 09-24-2012 at 02:16 PM.
11-03-2010, 11:12 AM   #310
Guest9283
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....

Last edited by Guest9283; 09-24-2012 at 02:16 PM.
11-03-2010, 11:15 AM   #311
Dexky
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So glad you let us take this journey with you Zig!! My heartrate became elevated just reading your last two posts!! Thanks you, thank you, thank you!!! What a fantastic outcome!!!
11-03-2010, 11:23 AM   #312
mollysmom
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I am in tears...happy tears...you did it! You also gave us all so much hope I know that the cure is out there and my daughter will EAT again and enjoy her life without Crohn's someday soon.

Thank you so much for sharing all of this with us. You are such a blessing and may God continue to bless you with a healthy body and life forever and ever!!!

~Thank you... CONGRATULATIONS!!!! YOU WON!
11-03-2010, 12:57 PM   #313
Stacyface
 
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WOW! Way to go Mr. Ziggy! Thanks for all you have done in providing us with the knowledge (and tools) to consider SCT as an alternative treatment. Hopefully someday soon it won't be a case of "if all else fails". You have helped to pave the way for others. You are a HERO! Thank you!

Last edited by Stacyface; 11-03-2010 at 01:03 PM.
11-03-2010, 01:02 PM   #314
Walt
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I tip my hat to you, Zig,
Thanks for the ride,
good show!
be well,
Walt

ps don't forget about us...
we won't forget sharing this courageous adventure with you!
wow
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currently 'enjoying' Metho, Remi gave me Lupus, Humira pens now weekly - jury still out?
whew, just a little Prednisone?

I'm starting to think Crohn's isn't as much fun as they made it sound in the brochure?

Be who you are and say what you feel,
because those who mind don't matter and those who matter don't mind - Dr. Seuss

A hard road is better than no road.

getting knocked down is nothing.
bouncing back is everything.


in the end, only kindness matters...
11-03-2010, 01:35 PM   #315
Dras
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I am in tears...happy tears...you did it! ~Thank you... CONGRATULATIONS!!!! YOU WON!

Ditto! I'm so happy for you
11-03-2010, 02:57 PM   #316
ThanksP
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You give me such hope. Thank you!
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11-03-2010, 03:13 PM   #317
Dallies
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I am so so happy for you. You have given so much hope. I would love to read an article in a mainstream about your journey. When it happens let me know.

Much love to you always xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
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Meds: humira

Surgery:hemicolectomy June 2010
11-03-2010, 03:23 PM   #318
DustyKat
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:mbh::mbh:

Oh wow Zig, this is such brilliant news. To say I am happy for you would be an understatement. You have been through so much over the last year and we have had the honour of being there with you for a big part of that journey. I can never never thank you enough for the personal insight and time you given to us, it truly is invaluable and inspirational. My wish for you is that this remission lasts you a lifetime and I hope and pray that your SCT buddies have as wonderful an outcome as you have.

All the very best to you Zig, you deserve it mate.







Dusty.
11-03-2010, 05:02 PM   #319
Amenace
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Ziggy

All i know of you is what i have read on here but i sit at my desk in tears.
You write so beautifully and you have allowed us (me) to share in the ups and downs of your treatment.

I wish you a wonderful life, filled with all the love, laughter and happiness one can ever have.

Lola.
11-03-2010, 07:01 PM   #320
crohnicaly stinky
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WOOOT!!!! WTG Zig!! Congratulations and thanks for sharing!
11-03-2010, 07:13 PM   #321
acg101
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Ziggy - As the one following your jorney from the very begining, I applaud your courage and pioneering spirit my friend.
I pray that all your upcoming test will show that its all gone.
big hug !
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-Best wishes - Dan

1. Diagnosed with Crohn's UC 1995
2. Flagyl/Cipro Imuran in 80%remission 1997 2005
3. Used 5mp, asacol, 6mp, remicade, imuran, Cimzia, entocourt, Flagyl/Cipro and enemas/suppositories until 2010 with periodic relief.
4. July 9th 2010 total ProctoCollectomy surgery! Free at Last!
11-04-2010, 04:29 AM   #322
beth
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Kewl Ziggy!
11-10-2010, 08:07 AM   #323
winemaker
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You're a champion mate!
11-11-2010, 10:46 AM   #324
Sue-2009
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I am so happy for you! This is such great news! I am very happy for you...This give me some hope. I just happened to see your post, on a day I feel like crap!---BTW, how are the other people doing with their transplants?

Peace, Sue
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Last edited by Sue-2009; 11-11-2010 at 11:13 AM. Reason: added info
11-12-2010, 07:12 PM   #325
Nica
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Hi Ziggy,
I just joined this forum and was directed to your thread by Dustykat. I have been sitting here glued to my computer screen reading this entire thread. All I have to say is wow, after 10+ years of crohns 6 years with no hope at all I have hope again. Thank you for sharing your story, I cannot tell you how much I appreciate that you have told us all your experience, Thank you for being a pioneer. I am going to look into the transplant, maybe it will be my next step (considering LDN was the only one left in mainstream medicine). Honestly, from what you describe having the transplant does not seem as bad as flares can be.
Nica
11-18-2010, 08:23 PM   #326
Manzyb
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I'm so happy for you Ziggy!!! This is some amazing news! You totally got through it and are now a healthy person! I bet you are just beside yourself :0) Awesome and congratulations!!!!!!!
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Sadie turns 2, 4/5/13!
11-19-2010, 07:34 PM   #327
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Dude... you've give me hope again.
This blog/series of posts is going to forever be googled...
Please don't forget to update it from time to time.

thank you.
11-22-2010, 05:26 PM   #328
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hi mr ziggy. i only joined this forum today and came across your story. you are a pioneer. out on the frontiers!!
much respect. i can tell you are an extremely strong person. thank you.
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12-11-2010, 05:24 PM   #329
douglaset
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I am a long time lurker but first time poster. Yesterday, my insurance company in New Mexico agreed to pay for the stem cell treatment. Northwestern accepted me into the trial in September. The insurance company denied me twice but yesterday the denial was overturned. I may start on January 3rd. Is it possible for me to connect offline with Mr. Ziggy? Is there anyone else on here who has gone through it.

Crohn's since 1984. 4 surgeries.
12-12-2010, 03:15 PM   #330
Guest9283
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I am still doing great guys. Thanks for all the support.

Douglas, I sent you my contact info.

p.s the another option now in the Burt transplant trial is using donor stem cells. A sibling is first choice. This is not the standard choice, as stem cells are still being taken from the patient, but donar is an option.

Last edited by Guest9283; 12-30-2012 at 04:16 PM.
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