My Stem Cell Journey

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Ziggy, great read. Great detail. I was looking for something to lead me in the right direction for a cure and I have been researching stem cells. I'm glad I found this thread on the forum. Thank you for your inspirational pioneering.


I'd love to be the next on this list, but since I can't really work I only have medicaid for insurance. I doubt I can get insurance approval for it. Do you have any idea about what insurance providers cover the costs, or do you only know of Aetna?


Thanks again and congratulations. I'll see you on the other side.
 
Good luck Ziggy! I hope your stem cell harvest goes well. It is so exciting to hear about these cutting edge new treatments :)
 
So, first, Ziggy, thank-you for posting this! It was this topic, and this topic alone, that got me even interested in stem cell. I am now awaiting my first infusion of a human placenta derived stem cell trial on July 26th. But here's something that's different: there's no chemotherapy! It's simply two two hour infusions of stem cells through an i.v. No side effects other than a possible head ache/fever that goes away with tylenol, and all of the other people in the trial had successful results in the two years that it's been going on. Plus: insurance doesn't have to cover it because it's a trial. :] So excited! If anyone else is interested, it's done by a company called Celgene.
 
scotishcanadian said:
So, first, Ziggy, thank-you for posting this! It was this topic, and this topic alone, that got me even interested in stem cell. I am now awaiting my first infusion of a human placenta derived stem cell trial on July 26th. But here's something that's different: there's no chemotherapy! It's simply two two hour infusions of stem cells through an i.v. No side effects other than a possible head ache/fever that goes away with tylenol, and all of the other people in the trial had successful results in the two years that it's been going on. Plus: insurance doesn't have to cover it because it's a trial. :] So excited! If anyone else is interested, it's done by a company called Celgene.
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I looked into the celgene injections for me too. Apparantly it is not the same one as ziggy. Since there is no chemo, there is no driving force to stop the active crohns. What the stem cells may do, is repair damaged/inflamed tissue, but not stop the disease. Kind of like any anti inflamatory drug that we commonly take. Hopefully better though. Chemo plays a major roll in these past trials, as you can't kill the crohn's otherwise. I really hope the celgene injections has great healing properties though - please keep us posted on your results!
 
Mr. Izzy said:
I looked into the celgene injections for me too. Apparantly it is not the same one as ziggy. Since there is no chemo, there is no driving force to stop the active crohns. What the stem cells may do, is repair damaged/inflamed tissue, but not stop the disease. Kind of like any anti inflamatory drug that we commonly take. Hopefully better though. Chemo plays a major roll in these past trials, as you can't kill the crohn's otherwise. I really hope the celgene injections has great healing properties though - please keep us posted on your results!
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Yeah, but it's not nearly as risky and when they ran colonoscopies on the other subjects a year after their initial infusion, their intestines looked as though they had never had crohn's at all. If this were to not work then I would pursue the chemo option, but it's a really time consuming one and very risky. Here's to praying and hoping that this one is the magic cure for me and hopefully others! I will definitely update in the coming weeks. :]
 
I am new to this forum and was wondering if there in any updated information regarding Stem Cell Transplants and anything about Mr. Ziggy's condition and how he is doing at this point?
 
You can find some more information in the other threads in the sticky about stem cell transplants.

http://www.crohnsforum.com/showthread.php?t=22259

I'm not knowledgeable about how places aside from Northwestern are doing them, but they're still accepting patients with the intent of using sibling donated stem cells, and umbilical cord stem cells if that's not viable. Read through some of the other info and feel free to ask any questions.
 
I'm just wondering..am I even sick enough to be considered for stem cell transplant? I've had crohns formally diagnosed since 2000 by full thickness biopsy and have had 6 bowel resections and 10 abdominal surgeries all from crohns. I've failed remicade and humira stopped working. My inflammatory markers however have always been nil..even at my sickest point. I have had abscesses in the past but none in the last 3 years and only had to use tpn once for two weeks in 2001. I don't feel I'm as sick as some..but my life revolves around being close to a toilet and being obsessed about what I can eat and when. I am able to eat however..any info from anyone would be appreciated!i did call dr Burt's office and got the initial candidate form sent to me and I'll call Paula tomorrow...
 
Thanks auntie em!it seems drastic but I'm about feeling out of options right now..I'm also getting rather close to the cut off age. I'm 51 so theres no time to lose!:)
 
ckt, we are the same age and in the same boat pretty much and there is so much more life to live and I want to live it with quality and joy with those around me.
 
Ms Cordelia said:
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!
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A new stem cell transplant trial recently popped up in Seattle, I believe. I've lost the email containing the info on it, but if you look under the clinical trials website or maybe even just google stem cell transplant in Seattle you may be able to find something.
 
Ckt - I always encourage everyone who is Giving this serious thought to make an appointment with Burt. Don't rely on anyone to tell you that you do or do not qualify...unless its Burt or his staff. Criteria is strickt but not set in stone. Only 1 way to find out.
 
Mr ziggy..I talked with Paula today and am faxing my initial evaluation in the morning. They are going to set me up for a colonoscopy and an mre!that fast. I can't even believe it that they are willing to slot me in while I'm in Chicago for a week, originally only to see the doctor who diagnosed me in 2000 at university of Chicago. Here's how crazy all this is happening..I only read your blog a few days ago and just called dr Burt's office yesterday!i had no intention of seeing anyone other than the u of Chicago guy. Now I'm about set up with the gi team at northwestern for the initial tests. Whoa!those are some quick acting and amazing people!
If you ever..and I mean EVER..wonder if your blog makes a differerence,don't even!it has affected me greatly. And even if I'm not a candidate for any reason, I have at least explored the possibility!and can thank god that this is available for so many who are really feeling there's not much hope with their auto immune diseases..bravo to you mr ziggy for paving the path! Paula told me today that even though the cut off age is 50,it isn't cut in stone and they are more than willing to at least consider me!:rosette2:
 
That's great news! They really are amazing people! Good luck, hope it all goes smoothly!
 
Ckt said:
Mr ziggy..I talked with Paula today and am faxing my initial evaluation in the morning. They are going to set me up for a colonoscopy and an mre!that fast. I can't even believe it that they are willing to slot me in while I'm in Chicago for a week, originally only to see the doctor who diagnosed me in 2000 at university of Chicago. Here's how crazy all this is happening..I only read your blog a few days ago and just called dr Burt's office yesterday!i had no intention of seeing anyone other than the u of Chicago guy. Now I'm about set up with the gi team at northwestern for the initial tests. Whoa!those are some quick acting and amazing people!
If you ever..and I mean EVER..wonder if your blog makes a differerence,don't even!it has affected me greatly. And even if I'm not a candidate for any reason, I have at least explored the possibility!and can thank god that this is available for so many who are really feeling there's not much hope with their auto immune diseases..bravo to you mr ziggy for paving the path! Paula told me today that even though the cut off age is 50,it isn't cut in stone and they are more than willing to at least consider me!:rosette2:
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Wonderful news! I told ya they are flexable on criteria.

Thanks so much for the heart felt comments. I had actually gone through my blog just the other day and took a bunch of it down. I figured no one was reading it anymore so i would take down stuff that a bit personal. Ended up just pulling a lot off. Now that i know it still makes a difference i will take time to edit the posts and put them back up.

Thanks alot :)
 
Definitely leave the relevant medical parts of it up! I still give your blog to people who are interested in learning more. :)
 
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!
 
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!?
 
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!!
 
[
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]
 
tichard said:
[
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.
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[/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).......
 
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!
 
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.
 
You don't need two HLA matches to participate in Dr. Burt's allogeneic bone marrow transplant anymore. Only one is sufficient.
 
thank you

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
 
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