My Stem Cell Journey

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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............................

:goodluck::goodluck::goodluck:

All the very best, :kiss:
Dusty
 
Hey Zig, thanks for the continued updates!! I'm looking forward to good news from your upcoming check-up!! Have a safe trip!!
 
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. :rosette1:
 
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!
 
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!!!
 
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!:):):)
 
WOW! :beerchug: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! :congratualtions::congratualtions:
:award2:
 
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bravo

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
 
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
 
: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. :hug:


:emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance:


:mademyday:

Dusty.
 
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.
 
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 !
 
Great News

:thumleft:
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!:ghug:---BTW, how are the other people doing with their transplants?

Peace, Sue
 
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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
 
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!!!!!!!
 
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.
 
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.
 
My insurance just agreed to pay for the stem cell treatment

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.
 
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.
 
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Congratulations Mr. Ziggy on completing this therapy - I'm so glad it has worked for you.
a quick question for you - you posted about using donar stem cells, is this what you are referring to?
http://www.clinicaltrials.gov/ct2/show/NCT00482092

Do you know if the people going through this still have to go through the wiping out of the immune system first - or is this a different method?
Also, if sibling stem cells are used, would that be a problem if the sib is diagnosed with Crohn's at a later date. So I guess I'm asking would that make the person who had them stem cell therapy at a genetic risk for getting it again.
I'm following the clinical trial from Osiris quite closely - it looks like it could be a great therapy in the future.
Again, thanks for going through this - and especially for posting your experience.
 
DMS said:
Congratulations Mr. Ziggy on completing this therapy - I'm so glad it has worked for you.
a quick question for you - you posted about using donar stem cells, is this what you are referring to?
http://www.clinicaltrials.gov/ct2/show/NCT00482092

Do you know if the people going through this still have to go through the wiping out of the immune system first - or is this a different method?
Also, if sibling stem cells are used, would that be a problem if the sib is diagnosed with Crohn's at a later date. So I guess I'm asking would that make the person who had them stem cell therapy at a genetic risk for getting it again.
I'm following the clinical trial from Osiris quite closely - it looks like it could be a great therapy in the future.
Again, thanks for going through this - and especially for posting your experience.
Click to expand...

That is another seperate trial I believe. Dr Burt has not started a whole new trial for this. Yes immune abblation is still needed. I do not know the answer to your sibling question, and I do not think they know at this stage either. That is most likely why they are trying it this way, to compare the differences in remission length. So far 9 years and counting is the longest remission for the original trial. I think oneday you will be given 2 options upon diagnosis. 1 will be what we know now as coventional medication/treatment. The other will be stem cell transplant.
 
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DMS said:
Congratulations Mr. Ziggy on completing this therapy - I'm so glad it has worked for you.
a quick question for you - you posted about using donar stem cells, is this what you are referring to?
http://www.clinicaltrials.gov/ct2/show/NCT00482092

Do you know if the people going through this still have to go through the wiping out of the immune system first - or is this a different method?
Also, if sibling stem cells are used, would that be a problem if the sib is diagnosed with Crohn's at a later date. So I guess I'm asking would that make the person who had them stem cell therapy at a genetic risk for getting it again.
I'm following the clinical trial from Osiris quite closely - it looks like it could be a great therapy in the future.
Again, thanks for going through this - and especially for posting your experience.
Click to expand...

I'm sorry I just read that trial again. Seems as they are not doing immune abblation. They are just administering the adult stem cells in crohn's patients. That could and most likely would heal some of the damaged tissue, and calm inflamation, but that will not put the crohn's to rest. So it could be a good short term solution in my opinion. You see with immune abblation, you are wiping any evidence and memory crohn's out of your system. That is why most of the time remission will remain for many years. Still very interesting! Thanks.
 
My Ziggy - Thanks for the message and encouragement and for your info. I will contact you.

They told me about the sibling/donor option. It was something that we briefly discussed but it wouldn't work for me; one of my siblings has Crohn's and the other 2 have other gastro issues. In addition, the insurance just approved a transplant using my own stem cells; it could be problematic/time consuming to then go through another approval process to receive a sibling's stem cells.
 
Thanks for your input Mr. Ziggy.
I'll definitely continue to follow this treatment option.

Good luck Douglaset - will you be starting in January? I hope all goes smoothly for you.
 
Ziggy what you did was an amazing help to all of us and your success gives hope to everyone that this will one day be an everyday viable option for people. Congrats and thank you!
 
Mr Ziggy,
Having just read this entire thread, I must say that you are an inspiration. I admire your courage and determination, and wish you nothing but good health and best wishes for the future. Hope thing's continue to go well for you.
Andrea
 
crazycanuck said:
For ziggy one question if you dont mind what insurance company was it that covered the treatment and was it 100%?
Click to expand...

I think I mentioned it before in here, but I have Aetna insurance. 100% covered. I'll never switch. Great company.
 
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Welsh-bird said:
Mr Ziggy,
Having just read this entire thread, I must say that you are an inspiration. I admire your courage and determination, and wish you nothing but good health and best wishes for the future. Hope thing's continue to go well for you.
Andrea
Click to expand...

Thanks! I am so glad it worked out, not just for me, but for everyone. =)
 
DMS said:
Thanks for your input Mr. Ziggy.
I'll definitely continue to follow this treatment option.

Good luck Douglaset - will you be starting in January? I hope all goes smoothly for you.
Click to expand...

Thanks DMS for the question.

I go for testing the week of January 3rd.
The mobilization phase begins on January 17th
I will be admitted for the transplant on February 15th.
 
douglaset said:
Thanks DMS for the question.

I go for testing the week of January 3rd.
The mobilization phase begins on January 17th
I will be admitted for the transplant on February 15th.
Click to expand...

Good luck! Please keep in touch and let us know how you are doing from time to time. I got a call yesterday to let me know another patient in my group of 3 got her biopsy results from her colonoscopy. She is now crohn's free, with no evidence of crohns anywhere! She was facing a total prolectomy before the transplant. That make 3 out of 3 for my group. Pretty encouraging. Stay strong.
 
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Ziggy,
After the transplant, are you now back where you were before the Crohns disease was ever triggered in you? Could it ever be triggered again? If doctors don't know what causes Crohns, how can they be sure its "cured"? Is it the NOD2 gene that causes it? Also, is stem cell stuff only done for adults?
Kathy

ps. You are one tough guy!
 
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douglaset said:
Thanks DMS for the question.

I go for testing the week of January 3rd.
The mobilization phase begins on January 17th
I will be admitted for the transplant on February 15th.
Click to expand...
Hello...
My son is scheduled to see Dr. Burt on January 5th..so I guess we may cross paths at some point? We keep hoping Dr. Burt will keep him and he will begin as soon as insurance okays it. What insurance do you have?

Safe trip and good luck to you....we will be awaiting your posts too!
 
Stacyface

Thanks for the message. Perhaps our paths will cross! I live in New Mexico and have Presbyterian Health Plan. I was denied twice but on the third try they accepted it. I just returned from Chicago late last night for the week of pre-testing. It was a lot of test but went well!

Thanks
DT
 
Mr. Ziggy,
I have to tell you, I am new here and in yet another downward spiral with Crohn's. I have spent the last 3 days in bed while trying to care for my 2yr old son alone all day who has just had a mild surgery (none-the-less he still has pain and is pretty miserable=difficult :S lol). Anyhow, I just found this thread as a recommended read from another member who responded to a thread I had started re: flareups, I read the whole thing while in bed with my best friends (gingerale, gravol, percocet and the laptop), and needed 3 emotional breaks to cry, I finished it and cried and cried and cried! Here I am yelling and complaining about how bad my crohn's is and how it has ruined my children\s and my life etc. and you risked so much on a chance! You amaze me and yet took an entire load off me! You have inspired, encouraged, educated and best of all gave me hope!!! Thank you!
I have a personal question for you and do not feel obligated to answer; did you ever feel/think you were alone with this? I mean, we all "know" other people have Crohn's but your case was obviously severe disease, did you ever feel like no matter who you talked to with or without the disease nobody really understood you? And may I ask how you found support through the illness and the recovery process? (I havn't been here long so I don't know if you are single or in a relationship- so if you are single how did you find dating, and if you were/are in a relationship how did you find it affected your relationships during all stages from illness, bad days, surgery, and transplant to recovery).
Also, do you know if they are doing any trials in Canada?
Have you heard of the surgery done in Germany, subtance sprayed (i think) in abdomen after adhesions are seperated to stop future adhesions from occuring? Apparent;y (from what I heard), it had a lifetime garuntee? Someone had told me this was referred to (not legitamtely named) the "SPAM Surgery"? Do you know much about this surgery? I met one person who had it done and unfortuneatly moved and lost contact with her.

Again thank you Mr. Ziggy for taking so much of your time to allow us the opportunity to follow such a personal, life changing, and emotional experience; I promise it was truly worth the hard work and many will continue to appreciate it!

GG
 
Autologuous SCT vs. Allogeneic SCT

Hello All:
I just recently returned from Northwestern with my almost 17 year old son, RJ. He was in fact accepted to the SCT trial. I see that questions have been raised regarding donor stem cells - which is what Northwestern would like to do with my son. To answer the question regarding screening for Crohns with donor stem cells, boodwork was sent to Promethesius labs to be screened for the NOD2 gene, the gene associated with Crohns which if carried, puts someone at a 25% risk of developing CD. The results will not be back until next week. Today, both RJ and his sister are going for the HLA typing blood work. They each will be tested to see if they are a match. They prefer a sibling first, if not they will look for an umbilical cord donor. Presently, these are the only two acceptable donors for an Allogeneic Stem Cell Transplant. The umbilical cord assures Dr. Burt they are naive cells. We are still uncertain if we will go through with the Allogeneic SCT (donor stem cells) vs. the Autologuous (your own stem cells), as there have only been nine performed in the country to date, and none of them for Crohns. They do however, feel that using a donor will, of course, lessen the chances of relapsing because they are hoping to take away that predisposition. I am waiting for some information from Dr. Burt on how the Allo SCT's done to date are doing presently. Doing the Allogeneic does carry increased risks. One of those risks is developing GVHD (Graft vs. Host Disease). Dr. Burt takes measures and follows specific protocols to prevent this, but nonetheless, it is a possibility. If anyone out there has any information on the Allogeneic SCT being performed for Crohns or other autoimmunes, please share. I have scoured the internet but I am unable to find anything. I realize that bone marrow transplants have been done for a very long time, but I am looking for more specifics relative to autoimmunes and the chance of complications down the road.

Thank you all.....and especially, thank you Mr. Ziggy.....my new best friend...you are the man!:hug:
 
fix typo

Grumbly Gut...are you talking SerpaFilm? I had that when they hooked up my Jpouch. And, trying not to look to blonde...but Which SCT did Zig have?
 
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Just spent over an hour reading this whole thread...

...wow.

A really inspirational read mate, hats off to you for being that brave.

This may seem like a really stupid question but, does Dr. Burt do this procedure on Ulcerative Colitis patients? I mean, after all it is all under the same category (IBD) =/

All drugs so far have failed on me, i.e. not sending me into remission for longer than a week, and the only things that 'seemed' to work were 30-40mg of Prednisolone AND pred. foam enemas (steroids) at the same time. But that only lasted a week before I relapsed. Currently azathioprine isn't having an effect on me either alongside my usual mesalazine (asacol) which i've been on since the beginning. The last thing I want is surgery, I feel optimistic about this stem cell procedure, and I know this is going to sound corny... but I can almost envision myself walking out UC free and healthy just like you did (thanks to some inspirational reading just now ;))
 
UC isn't quite exactly under the same category. UC and Crohn's are both forms of IBD, but I think the jury is still out on whether or not UC is an autoimmune disease. That's just from my "professional" knowledge so I'd say it's still worth looking into more.
 
effdee said:
UC isn't quite exactly under the same category. UC and Crohn's are both forms of IBD, but I think the jury is still out on whether or not UC is an autoimmune disease. That's just from my "professional" knowledge so I'd say it's still worth looking into more.
Click to expand...


Damn :(
 
Sue-2009 said:
Grumbly Gut...are you talking SerpaFilm? I had that when they hooked up my Jpouch. And, trying not to look to blonde...but Which SCT did Zig have?
Click to expand...

No I do not nor ever taken SerpaFilm, what is it? If it can help I would love to know more about it.

thanks,
GG
 
pav89 said:
Just spent over an hour reading this whole thread...

...wow.

A really inspirational read mate, hats off to you for being that brave.

This may seem like a really stupid question but, does Dr. Burt do this procedure on Ulcerative Colitis patients? I mean, after all it is all under the same category (IBD) =/

All drugs so far have failed on me, i.e. not sending me into remission for longer than a week, and the only things that 'seemed' to work were 30-40mg of Prednisolone AND pred. foam enemas (steroids) at the same time. But that only lasted a week before I relapsed. Currently azathioprine isn't having an effect on me either alongside my usual mesalazine (asacol) which i've been on since the beginning. The last thing I want is surgery, I feel optimistic about this stem cell procedure, and I know this is going to sound corny... but I can almost envision myself walking out UC free and healthy just like you did (thanks to some inspirational reading just now ;))
Click to expand...



Pav - Thank you for your kind comment. I appreciate your words.

Pav, before you give up on that envision, let me ask Doctor Burt about UC for you, and see what he says.
 
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Grumbly...Serpa Film (not sure if it is the correct spelling) is something they use in surgery. The apply it somehow in your inside before they close up to avoid or minimize adhesions.
 
And...Zigman...curious thought for Dr. Burt...My crohns looks like and has the same symptoms as crohns..But, the blood work was "inconclusive". Remember I am the gal with no "colon"--no pun intended. But, I wonder if Dr Burt only does surgery on people whos blood work shows crohns...Sue
 
Sue-2009 said:
And...Zigman...curious thought for Dr. Burt...My crohns looks like and has the same symptoms as crohns..But, the blood work was "inconclusive". Remember I am the gal with no "colon"--no pun intended. But, I wonder if Dr Burt only does surgery on people whos blood work shows crohns...Sue
Click to expand...

Sue, are you saying that you have never been officially diagnosed? I would think they would need a doctor to atleast diagnose you with crohn's for liability purposes. The grants must have stipulations im sure. Although I don't think that you need blood work for a diagnosis of crohns. I'm sure Dr. Craig (the GI on board) could even diagnose you to get you in. That is if your symptoms ever get too bad crohns wise.
 
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Zig--
All my blood work is inconclusive. But, when I am flaring and I am scoped. IT shows that I have crohns and inflamation....But, the actual blood work...comes back inconclusive. All my medication, collectomy-u/c, now crohsn :( Hate it!!!
 
Sue-2009 said:
Zig--
All my blood work is inconclusive. But, when I am flaring and I am scoped. IT shows that I have crohns and inflamation....But, the actual blood work...comes back inconclusive. All my medication, collectomy-u/c, now crohsn :( Hate it!!!
Click to expand...

I know Sue. It's tough. I really think you should give Paula a call. She is the main assistant, and very knowledgable. Even if you don't want to join the transplants now, you can still call her for any closure on this. However I really think if it ever gets bad enough that they won't turn anyone down. These are great people - they always find a way to help.

312-503-1435. Just tell her you spoke to me. She will understand which trial you're talking about.
 
Sue-2009 said:
Grumbly...Serpa Film (not sure if it is the correct spelling) is something they use in surgery. The apply it somehow in your inside before they close up to avoid or minimize adhesions.
Click to expand...

I have never heard my surgeons mention it, not to say they havn't used it, but if they did they didn't tell me about it (and I wrote everything down from when I was in the hospital - as so many mistakes have been made in the past I document everything just in case). I will have to ask the next appt I have with my surgeon and remember it for the future surgeries.

Thanks for the info!

GG
 
Update on Stem Cell Transplant

Hi everyone
Mr Ziggy's example has been wonderful for so many people. My wife has encouraged me to record what is going on with my stem cell transplant. I hope that Mr Ziggy doesn't mind posting this here but it seems that quite a few people are already reading this thread; posting here (rather than creating a separate thread) seems like a good idea but if anyone has any suggestions please let me know.

I am a 38 year old male who has had Crohn's since 1984. They gave me Prednisone for years; they tried lots of other things but none really worked (e.g., Pentasa, Azulfadine, etc.). At age 26 (1999), they did the first resection. I got an abscess one week after that and had to have emergency surgery, a temporary ileostomy and then ileostomy reversal 6 months later. In 2000, I got Remicade which worked quite well for a few years. Then things started going downhill. My body built up a resistance to Remicade; Humira and Cimzia didn't really work for very long. They did another resection in 2009. The benefits lasted for about one year. I started to feel like the all of the options were ending and looked into the stem cell transplant. My insurance finally agreed to pay in December 2010. I started the actual transplant process this month (January 2011). The week of testing was okay. The colonoscopy prep and exam provoked the Crohn's a little bit so I was kind of miserable for a day or two but all in all was fine. I went home for a week and was able to spend good times with my family. I am married and we have 5 kids (one of whom we are in the process of adopting - she is currently a foster child). The main reason that I am doing this treatment is to give me the ability to be there for my family. The past year has been one of new symptoms for me - e.g., extreme fatigue - and the Crohn's spreading from the ileum to the colon. It was hard to do very much. Fortunately, my job is one that is very flexible and I have been able to continue to work through the ups and downs.

This past Monday, I received the first dose of chemotherapy. As Mr. Ziggy has indicated, the doctors and nurses are wonderful. The hospital is wonderful. I did get some nausea and vomiting from the chemo but it was mostly uneventful. This is perhaps because I also had a decent appetite. The worst side effect came from an unexpected interaction between two anti-nausea drugs which kind of caused some severe feelings of anxiety but it passed. Right now I am in Chicago waiting for the Neupogen injections to start. I am staying with some friends right now; my wife arrives tomorrow to help me which will be wonderful. Next Thursday, one week from today, I am scheduled for the extraction of the stem cells. I feel good and overall feel that I could recommend this procedure to anyone with Crohn's (or other autoimmune disease) who feels like other treatment options aren't working. I will try to post more over the next few days.
 
Zig
You bet - please call me Doug. Thank you for kindly allowing us to post here and for your kind message. The positive vibes are definitely coming through. I am looking forward to getting to that amazing place!!
Thanks again
DT
 
Seprafilm is an Adhesion Barrier used to reduce internal scarring (adhesions) after open abdominal/pelvic surgery.Serpa Film. Its been used for a while and its dissolves as the scarrings heals.

I have been following Ziggy's brave path from the very begining and I am very thankful for his kindness. I pray that his treatment will hold and keep him from harm.
 
@ Ziggy, I had a question for ya? Do you know if this stem cel therapy has worked for people who have Crohns along with another auto-immnue disease like RA or Spondylitis? Or even if they have just had the therapy for another condition besides Crohns? Ive read about MS but what about the Arthritic type diseases? By the way its undescribeably amazing what you are doing...keep up the great work!
 
Further information on stem cell transplant

Today, I was thinking of something Dr. Burt explained to my insurance company which really helped me understand what the stem cell transplant is. In fact, he indicated that the use of the word transplant is kind of a misnomer. The insurance company ended up calling it stem cell treatment. He said that really what they are doing with this novel, amazing therapy is quite similar to standard autoimmune disease treatments which is suppressing the immune system. Most of the drugs that we take suppress the immune system in one way or another. What Dr. Burt does is completely suppress (kills) the immune system with chemotherapy. He explained that the extraction and re-infusion of your own stem cells is not really necessary. Your body would re-grow its own immune system without them re-infusing the stem cells. It would just take longer. He compared extracting and then re-infusing the stem cells to extracting and re-infusing red blood cells for surgery - doing so speeds up one's recovery. His explanation sure helped me understand better what is happening to me.
 
Doug, you did a great job explaining that. That totally makes sense. I was wondering how they 'transplant' the stem cells. How do they do that? Inject them into the intestine?
I wonder if over time and more experimentation they will come up with easier ways then chemotherapy. I always think of chemo of being soooo bad. My dad was on that for cancer. They didn't want his immune system to reach 0. When my dad accidentally got to that they stopped his chemo cause it was dangerous to him. I'm so in awe at you and Ziggy's courage. This is a dumb question...but I guess this will never be an option for kids...too dangerous for their little bodies. I just hope this research leads to something better. This 'cure' means they're close.
I'll say a prayer for you Doug. Keep us posted.
 
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Shake-N-Jake said:
@ Ziggy, I had a question for ya? Do you know if this stem cel therapy has worked for people who have Crohns along with another auto-immnue disease like RA or Spondylitis? Or even if they have just had the therapy for another condition besides Crohns? Ive read about MS but what about the Arthritic type diseases? By the way its undescribeably amazing what you are doing...keep up the great work!
Click to expand...

They do SCT's (autologuos) for RA. To date, they have even done 7 allogeneic SCT's for RA. I am not sure about Spondiylitis. Here is Northwestern's Link that explains a bit:
http://www.stemcell-immunotherapy.com/index.html

Here is a link on Dr. Burt: (click on Biography tab)
http://www.nmh.org/nm/physician_burt_richard_k_1013

Mr. Ziggy has a great relationship with Northwestern. He can fill you in better.
 
Stacyface said:
They do SCT's (autologuos) for RA. To date, they have even done 7 allogeneic SCT's for RA. I am not sure about Spondiylitis. Here is Northwestern's Link that explains a bit:
http://www.stemcell-immunotherapy.com/index.html

Here is a link on Dr. Burt: (click on Biography tab)
http://www.nmh.org/nm/physician_burt_richard_k_1013

Mr. Ziggy has a great relationship with Northwestern. He can fill you in better.
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Thank you Stacy. I have been PMing him, but you answered his question better than I could have. I'm glad your here to help support this. :)
 
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Brian's mom - Burt has done a 15yr old kid. However it is a lot harder process when they are younger. Burt says the building across the road from Northwestern will be a childrens hospital, and they will most likely start children stem cell transplants there.
 
Hello everyone. I contacted Paula yesterday about getting the stem cell transplant process underway. I should be able to get everything they need by early next week, and then set up an appointment to be evaluated and go from there. I'll definitely make a proper thread about it to track everything sometime soon.
 
Mr. Ziggy said:
Brian's mom - Burt has done a 15yr old kid. However it is a lot harder process when they are younger. Burt says the building across the road from Northwestern will be a childrens hospital, and they will most likely start children stem cell transplants there.
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Your welcome!

p.s. Still haven't decided...auto or allo?..ugh...conference call with Duke University doc tomorrow am.
 
Brian's Mom

Thanks for your kind message and prayer!

The re-infusion of the stem cells is into your blood stream via a special IV rather than directly into the intestines

DT
 
Stacyface said:
Your welcome!

p.s. Still haven't decided...auto or allo?..ugh...conference call with Duke University doc tomorrow am.
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Huge decision!! ... What ever you all choose, know that everyone will be behind you guys. Just exciting to think RJ will soon be crohns free... :)
 
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effdee said:
Hello everyone. I contacted Paula yesterday about getting the stem cell transplant process underway. I should be able to get everything they need by early next week, and then set up an appointment to be evaluated and go from there. I'll definitely make a proper thread about it to track everything sometime soon.
Click to expand...

Awesome. I think you have made the right decision effdee. Also thanks for considering doing a blog also. It is now people like you and Adrian, and RJ(and stacyface), posting their blogs, that will help this therapy move forward. Hopefully it won't be too long before this is an option for everyone.
 
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Mr. Ziggy said:
So I had the colonoscopy, and now it's time for the lower GI. My final test. I'll spare you the story this time hehe. It was GOOD! Tests revealed everything was normal and healthy. Leaving the hospital, I got a call from a Dr. Jane on my phone. He was a fellow of Dr. Burts that I had seen every day during my transplant stay in hospital. He was a quite, calm, and conservative guy. He had called me with excitement in his voice, to say that he had just spoken to Dr. Craig who had told him that I was in remission. He said he then ran over to doctor Burt and he had said the same thing - no evidence of crohn's. He wanted to call and congratulate me personally which I thought was a nice touch. I wish I could of heard the word "remission" myself from Dr. Craig, instead of the "quintessent" that I had gotten upon waking after my colonoscopy. So both procedures done, both with better outcomes than I could have dreamed of. I have a new respect for life, and I will keep this posive attitude in what ever is to come in my future. Humbled I am.

This was my story, my journey, that became a journey for you all who are reading this. With the support, the prayers, and friendships that were made from this blog, I would like to thank everyone of you from the bottom of my heart. I am a free man!!!!

Ziggy
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So glad to read your story. It gives me hope!
 
Brian'sMom said:
stacyface,
Are you considering stem cell transplant for RJ? Why is it harder for the younger patients do you know?
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Paperwork. Legal issues. Stem cell transplants on a minor in a hospital for adults. As far as the procedure goes, I think it would be easier on the body of a 16yr old vs someone that is 65. That is why the cut off limit for the trial is 55 I think.
 
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If you don't mind me asking...were you part of a study? If so, how did the rest of the people respond? I'm at the end of my rope, the only medication left is Tysabri for me and I'm scared to try it! So I'm looking into all my options :)
 
Stacyface said:
Hi Brian's Mom:
I believe Dr. Burt takes 17 and older. However, Duke has a pediatric stem cell transplant trial and I found a clip some time ago on a 16 year old girl who had an SCT for Crohn's at Children's Healthcare of Atlanta. Here is the clip:

http://www.myfoxatlanta.com/dpp/news/ga.-girl-battles-painful-crohn's-disease-032410
Check it out....hope this helps.
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THANK YOU SOOOOOOO MUCH for posting that link! I live in ATL so it was even more striking to watch that video of the courageous young girl. I'm at the point where I don't have any other options so watching her gave me hope (along with reading the other stories). I'm teary-eyed yet full of hope.
 
Brian'sMom said:
stacyface,
Are you considering stem cell transplant for RJ? Why is it harder for the younger patients do you know?
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Yes. My son is sceduled to begin SCT the end of the month at Northwestern. I suppose eventually it will be offered for younger patients as well. Did you see my previous posts and the links I sent regarding Duke and Atlanta Children's Healthcare? They do pediatric SCT's.
 
WOW!!! Ziggy you are amazing!! I haven't been on this forum in WAY too long and randomly come back to be glued to the screen, reading the entire 14 pages of this thread! I'm so glad I did!
This research and new development brings great hope to so many of us and your blog I'm sure will live on to help many people understand exactly what is involved!
I actually half way through reading it ran and got my girlfriend to tell her everything. I honestly had no idea this was possible. I'm ashamed to say but I kind of wish now that my body would start to reject the remecade so I can get involved in this! Lol!

Thank you Ziggy, and the others who are now getting involved with SCT you are all pioneers that I'm sure will help to make this treatment more widely accepted!
 
Ziggy, thank-you, just plain Thank-you. I know at this time I wouldn't qualify for this treatment as I am still responding to the Remicade. But I sat here reading your journey in total awe. How did I miss this?
I, like Fog, almost wish the Remi would stop working. I'm 53 yrs old and I'm so tired of having lived this life for the last 25 yrs with no hope to be Crohns free. And now time for me may run out because of the age limit and the fact that the Remi is still working. I've missed so much because of this damn disease that I will never get back, but you took us along on a journey with so much promise that I have tears running down my face because of the hope our young people have.
Because of this journey and you sharing it with us the word will get out about this promising treatment. Even if I have to live with this the rest of my life, I know that now if one of my boys or my grandchildren are ever diagnosed.... there is true hope out there

Thank-you so much, Ziggy
 
@Mr. Ziggy

How do you feel today do you feel off the chrons at all?

How is it with food and so on can you eat well and whatever you want or are you restricted in your diet?
 
Well I just found this blog and broke into tears when I got to the part where you were diagnosed in remission. I admire your strength and ability to stay positive though such hard times.

My husband has had crohn's for 8 years and has tried it all (including hookworms). We have had only marginal success with Remicade (stopped working after 1 year). The hookworms worked for a short time, but then he mysteriously lost them. We reinfected him, but the side effects were too harsh and he ended up in the ER where he opted to end the treatment. He had some success with MMS, but it's not doing much anymore. LDN only made him sicker (they initially compounded it with lactose so by the time we found out, he was in a bad flare). He was also in the Osiris / Prochymal clinical trials, but we think he got placebo because he got very sick during the trials.

Now we are inspired by your story and would like to look into Stem Cell Transplantation. I see the Northwestern trial is not taking new patients. Have you heard of any trials in CA or at least somewhere close to the west? I don't think Duke is an option (too far). We are making an appt with our GI to discuss it. Any advise would be appreciated. By the way, how are you doing these days?
Thanks for your story!
 
Miss Cordelia:
Can you explain the type of hookworms, how they were administered and the supplier? Many are interested in this treatment but few have tried them..I have not heard of such an adverse reaction as yet. Any info you can supply would be great...There are many threads about this form of therapy but most are theory. Only a handful have tried it. Please post! Thank you!
 
Stacyface said:
Miss Cordelia:
Can you explain the type of hookworms, how they were administered and the supplier? Many are interested in this treatment but few have tried them..I have not heard of such an adverse reaction as yet. Any info you can supply would be great...There are many threads about this form of therapy but most are theory. Only a handful have tried it. Please post! Thank you!
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Stacyface:
I'll make a thread describing our experience with hookworms. I'll PM you to let you know.
 

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