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Crohn's Disease Forum » Your Story » Back again to share my story as it unfolds =)


05-28-2010, 03:04 PM   #1
Guest9283
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Back again to share my story as it unfolds =)

Well I was here before, talking about how I wanted to do a stem cell transplant and share the information with you as I go on my pursuit. However an admin or moderator booted me. I am guessing this was because I had 2 handles(user names). I made another user name, as I felt I left a bit too mch information on the previous handle for my liking. I would love to share as much as I can about my history and experiances with all you fellow crohnnies, but am very private when it comes to my personal life and there for made another handle with less personal info in my posting. I wish the moderator would of just asked me about it before hand. None the less, I have enrolled in a trial in the US being done where they administer the transplants. I had to be approved by 3 doctors and and meet the criteria of such things like having tried all other drugs and options available. I was the 1st child ever to try remicade which has become a remarkable drug, and I am now willing to try this thearapy...mostly for myself but also to hopefully give people a better understanding of the treatment and maybe to help encourage other who are stuck with no more alternative options. I will be making a blog about this in another thread, explaining everything, every step, making some short videos, and i welcome any of you to join me in my journey if you are interested.
If an admin or moderator kicks me again without talking to me first I will simply go to another forum and share my story elsewhere. My goal is not to start trouble, or to tell people to take this route, not to promote anything, but simply to spread some knowledge to people in similiar situations who find themselves either facing an ostomy or worse. In all I just hope it helps at least a few of you get a better understanding. It is only the MOST effective therapy known to man for crohns to date. 80% success rate of full remission which would be of the worst cases of crohns in the US. I'll sign off for now and hopefully when I come back I wont be banned and can start my log. I fly to Chicago for the transplant on Monday BTW.
05-28-2010, 05:00 PM   #2
Nyx
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Good luck with the transplant...keep us posted on your progress, I'd be interested to see how it works for you.

Btw, living with an ostomy isn't that bad at all
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Crohn's Diagnosis: May 2006
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Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

05-28-2010, 05:33 PM   #3
Guest9283
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...

Last edited by Guest9283; 07-27-2010 at 04:32 PM.
05-28-2010, 06:47 PM   #4
GoJohnnyGo
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Hello Mr. Ziggy,

It's possible your original account was accidentally deleted. Up until recently the forum administrators were dealing with incessant spambots.
05-28-2010, 08:26 PM   #5
ameslouise
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Hi Ziggy and welcome back!

Good luck with your treatments - I look forward to reading about how it goes!

- Amy
05-29-2010, 04:21 PM   #6
Claire617
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Good luck! and please keep us updated!! I look forward to finding out how it goes for you
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05-29-2010, 05:23 PM   #7
Crohn's 35
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This is truly amazing, anything to help a person with this agonizing disease is welcomed for any new information. I maybe checking things out in your blog in the future. Take care and good luck!
05-29-2010, 06:01 PM   #8
DustyKat
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Good luck with the transplant and have a safe trip. I too am looking forward to reading about your progress and hope all goes well.
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05-29-2010, 06:16 PM   #9
kenny
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I wish you luck with this and I am glad you got approved. Is there any data on it for 10-20 year post procedure? It would be great if this turns out to be a cure for Auto Immune diseases someday.
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05-29-2010, 08:59 PM   #10
Guest9283
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First of all thanks for all the support everyone. I guess I kinda wished I had more info out there when I was making my decision, but truth be told it's kinda hard to find - Especially since the USA is moving rather slow with stem cell progress compared to other countries like Spain for example which is already offering not only on a trial basis for crohns patients, but actually as an alternative form of treatment now!


I wish you luck with this and I am glad you got approved. Is there any data on it for 10-20 year post procedure? It would be great if this turns out to be a cure for Auto Immune diseases someday.
I believe the first transplant for crohns was done in 2001 and that patient is still 100% crohn's free. Now other patients have had their crohns come back after a couple years or so. However whenever their crohn's came back it was never close to being as severe as it once was and they then responded to treatments which had stop working for them all over again like their first time. That would be the other 20%. They are now even taking extra stem cells from the patients and freezing them in case they ever decide to do the transplant again, if the crohns ever got that bad again. So far they have not had the need to use the extra cells again. I am however only talking about this trial I am enrolled in - Not sure on other trial stats. I've talked to 7 people that have had this done and they all say the worst day of the entire transplant process wasn't near as bad as one of their worst days with crohns. Most of them say the hardest part about the procedure is the mental/emotional state it can put you in. I however and very positive and call me crazy but as of yet i am not scared at all - I know with these docs, I am in great care.

Last edited by Guest9283; 05-29-2010 at 09:01 PM.
05-29-2010, 10:15 PM   #11
toolshed11
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Good luck and hope it goes well
05-30-2010, 06:08 AM   #12
Dexky
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Hi Zig, my niece sent me some info about this procedure. I was wondering when it would find its way to this forum. Glad you posted and please keep us all posted on your progress.
05-30-2010, 11:28 AM   #13
Astra
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Hi Mr Ziggy
and welcome

Besta luck, I wish you well, anything that could potentially be a cure is very welcome!
xxx
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06-03-2010, 12:35 AM   #14
Guest9283
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Ok I have not forgotten at all. i am in Chicago now and have been making my blogs each day and just need some time away from docs and tests and fatigue where I can put my mind together and decide how i am going to organize and perpare this all for you. Its a two month process so Im not sure if it would be best to blog it all for you each day, or just inform you of the neccery stuff... Maybe I'll break it up into sections where those that want each detail can read the blogs and see how i get through it all, and another section where I just cut to the chase and summerize the important stuff. Some feed back on what all you would like would be helpful. I'll start tomorrow either way! Im so excited to finally getting started =)

Last edited by Guest9283; 06-03-2010 at 01:00 AM.
06-03-2010, 12:49 AM   #15
Nyx
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Personally, I'd be interested in a day to day account.
06-03-2010, 01:00 AM   #16
MisB
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Good Luck! I'll be keeping an eye out for your progress.
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Surgery 8-2010 removed ileum, appendix, 1.5 ft of colon, 21 lymph nodes and a 5 cm tumor. All lymph nodes tested positive for cancer.

Conclusion: Crohn's is in remission, start chemo for cancer end of Sept, or beginning of Oct.

All my meds are pertaining to surgery healing and stress.

06-03-2010, 05:08 AM   #17
Dexky
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I'm with Cindy. Day to day summaries.
06-03-2010, 06:41 AM   #18
D Bergy
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Best of luck to you on the new procedure.

Keeping a journal of your experience and results is really a good idea. I did this when treating my wife's Lyme Disease for my own reference. I have a bad memory anyway, and the Journal keeps everything in perspective. It is surprising what we both have completely forgotten over time.

I hope this works out well for you, and others can use it also.

Dan
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06-03-2010, 06:53 PM   #19
Manzyb
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Hey Ziggy!

I hope all goes well. I am also looking forward to hearing how it all goes for you. Best of luck!

Amanda
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06-04-2010, 06:03 AM   #20
DustyKat
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I'm all for daily accounts as well.

Dan is right about the journal. I ended up doing this with Roo in the last few months prior to diagnosis. It is so easy to forget and muddle information when you are living it day in and day out.
06-05-2010, 12:05 AM   #21
Guest9283
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Great! It makes it worth while for me to hear that some of you are really interested in following along. Please feel free to ask any questions along the way. I am doing this for all my crohnnies along for myself as well of course.


http://www.crohnsforum.com/showthread.php?t=10838

Last edited by Guest9283; 06-05-2010 at 12:07 AM.
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