My Stem Cell Journey

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DustyKat said:
Thanks for the update Ziggy.

I'm sorry to hear about your setback but it sounds like you have it under control.

You know Zig, you never cease to amaze and inspire me. :awe:

Always in my thoughts and prayers.
Dusty.
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Thanks Dusty, you never cease to put a smile on my face with your posts. Also as you see, everything is now under control - no big deal ;)
 
Hi Zig,

Good to hear you feeling much better, YAY. Don't worry about telling us of the setbacks you have 'cause that's just the way it is and I don't think I'd be too far off the mark in saying that most of the peeps here are more than used to that!

Hope all goes well with the picc line and I've got my fingers and toes crossed that it stays infection free this time.

All the very best and I will be thinking about you Zig. :hug:
Dusty
 
Zig,

Thanks for the updates. You're battling hard man, you have to be proud of the efforts your putting in here and I don't say that as a question, I'm telling you HAVE to be proud. lol! Keep up the great work!
 
Thanks for the updates, carry on telling us the good and the bad, it is so great to have someone blog this for us. Sounds like your so positive which is just great, keep it up and keep in touch
Jo x
 
Gooo ZIIIIG!!!!! I am sorry about the set back...THose darn pic lines are a love hate thing to for us...They help and sometimes set us back. Hows the crohns thing through out all this? You doing okay? Thanks for getting back on line..I was worried about you! Take care..and I am glad you keep posting...Sue
 
Friday July 16th

So this morning I was informed that my cultures from the bacteria infection had not grown now for 3 days! Which means they scheduled me for a picc line placement and I have just now had that put in about 30 min ago. Went great. The doctors also informed me that since I look like I am recovering so well, they have decided to go ahead and continue stage 2 treatment starting Tuesday!! As mentioned it will be 7 days of chemo, re-infuse my stem cells and then im done!! The culture has also revealed the exact strain of bacteria that caused the infection, so now I will only be treated with one antibiotic to fight that strain for the next 3 days. I feel great otherwise, and I can start to taste freedom already!! :) I do know though, those 7 days and post chemo won't be no walk in the park. But the blogs will continue through them, I'll find the strength for you guys. Just wish me luck!
 
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DustyKat said:
Hi Zig,

Good to hear you feeling much better, YAY. Don't worry about telling us of the setbacks you have 'cause that's just the way it is and I don't think I'd be too far off the mark in saying that most of the peeps here are more than used to that!

Hope all goes well with the picc line and I've got my fingers and toes crossed that it stays infection free this time.

All the very best and I will be thinking about you Zig. :hug:
Dusty
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Yeah, I just didn't want to deture, or turn anyone here off picc plane placements. I think they are one of the most bennificial tools we have...especially going through chemo.

Thanks for the crossed fingers and toes - looks like it payed off! ;)
 
crohnicaly stinky said:
Zig,

Thanks for the updates. You're battling hard man, you have to be proud of the efforts your putting in here and I don't say that as a question, I'm telling you HAVE to be proud. lol! Keep up the great work!
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Thanks sir, I try to do my best. If I try my best, I can never be dissapointed if things turn for the worst. But thanks again - There's no doubt in my mind that anyone of us could have pulled this off, you just have to have your back up against a wall to see your true colors!
 
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reidyjo81 said:
Thanks for the updates, carry on telling us the good and the bad, it is so great to have someone blog this for us. Sounds like your so positive which is just great, keep it up and keep in touch
Jo x
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Jo, I made a promise to you guys that I was going to give you all the good, the bad and the ugly news, and I keep to my promises. Last thing I would want to do is give you all a misconstrued perception from a biased blog. :)

I'll keep the posts flowing now that I am back in Chicago!
 
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Hey Zig,

Wishing you good luck as requested:;)

GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK.

I hope the next phase of your journey is trouble free!

All the best and take care,
Dusty
 
Hey Zig, so from this point you are in isolation is that correct? I was wondering about your surroundings during this time. Do you still have contact with the others going through the transplant? How are they doing? Thanks for all your hard work on keeping this blog going AND taking the time to answer curious onlookers. You're quite an inspiration. Good luck L!!!
 
DustyKat said:
Hey Zig,

Wishing you good luck as requested:;)

GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK, GOOD LUCK.

I hope the next phase of your journey is trouble free!

All the best and take care,
Dusty
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:) THANKS!! And it will be trouble free. I can't wait to get this over with so I can't bring some more encouragement to you all about this treatment! I have talked to the other 2 patients and I am sure they won't mind giving you their thoughts and experiances once they are done. They both are on their 4 day of chemo. 2 Days of a new chemo, and 2 days of cytoxin (the same chemo we had gotten in round 1). They both say they feel just fine. One is running a temperature on and off, however that has always been conclusive with her crohn's so it's to be expected. All in great spirits.
 
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Dexky said:
Hey Zig, so from this point you are in isolation is that correct? I was wondering about your surroundings during this time. Do you still have contact with the others going through the transplant? How are they doing? Thanks for all your hard work on keeping this blog going AND taking the time to answer curious onlookers. You're quite an inspiration. Good luck L!!!
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I myself am not in isolation yet. On Tuesday I am now scheduled for chemo and to go to the Pavilion building, which has the isolation floors. I went to visit 2 of the patients currently in isolation there, and it looks like a 5 star hotel once you get in there. You are allowed to have visitors and see other patients while you are there. The elevator doors open and there is a room and you have to open the gate. Once that gate opens there is another room with another gate that wont open till the last one closes. Then there is an identical room again that wont open until you wash your hands at the counter to the right. They are doing fine - no side effects whatsoever yet. The one girl is running a minor low grade fever on and off which is expected in her case because she always has them due to her crohn's. The rooms are HUGE with wooden floors and 50' LCD tv's and nurses that only attend to 3 patients 24/7. So you get extra attention. All in all they seem very comfortable.

You are welcome for the blog, and keep any questions coming - it makes my blog more insightful for those that will read it in the future. :)
 
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crampygut said:
I wish you the best of luck Ziggy! You are truely brave and I hope this ends your Crohn's Permanently.
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Thank you sir!
I hope so too. I hope this therapy to be the end of many other peoples history of crohns too! The procedures really are not half as bad as i thought them out to be either.
 
A long and tough trip...some minor pampering seems in order. Feel free to sneak out a couple of TVs and share with the group.
I am just so interested to find out how this works for you (as likely many of us are).
 
Hey Zig,

All is sounding good and you're sounding upbeat, YAY!!! I'm getting excited for you......:emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance:

:goodluck::goodluck::goodluck:

Thinking about you buddy,
Dusty
 
phillycrohns said:
Hi Ziggy:

I just read your further updates and am looking forward to hearing how things are going. I hope you are well. You are still in my thoughts and prayers. I have one question for you--not sure if you know the answer being that you are male. But here goes: if you are a woman of child-bearing age, and want to have children, how do this stem cell therapy affect ones ability to have children in the future, if at all? Just wondering if you know, though by the time this type of therapy becomes open to the rest of us crohnnies, I may be past my child-bearing years anyway.

All the best!
Chris
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Ok, so as promised, I got an answer to your question - Females can go and deposits eggs at a bank, but the doctors feel it's not necessarily a big concern, as the risk of turning infertile for a woman are just 2%. :)
 
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Wow Wow Wow and more WOW!!! lmao you know this was the story I missed the most reading when I was in hospital the last month!! Glad I caught up with your amazing journey now. Have a wonderful time back home :0)

loadsa luv and best wishes xx
 
I just read this entire thread right now...amazing! i love that you are doing this...i really really hope to see some increased awareness of the potential miracles that stem cells can provide. i wish you all of the best, and hope to see you keeping us posted about the results of the therapy!
 
Hey Zig, hope you are well!! It's been a few days. Just worried about you and curious. Keep us posted.
 
Barbie said:
Wow Wow Wow and more WOW!!! lmao you know this was the story I missed the most reading when I was in hospital the last month!! Glad I caught up with your amazing journey now. Have a wonderful time back home :0)

loadsa luv and best wishes xx
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Thanks, it puts a smile on my face knowing you enjoy reading my story - I enjoy writing you all about my experiances too.

Why were you in the hospital? Are you ok??
 
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Dexky said:
Hey Zig, hope you are well!! It's been a few days. Just worried about you and curious. Keep us posted.
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Sorry Dex - I tried to blog yesterday, as it was my first treatment of the chemo drug "Rituxan". However I could not get a good wifi signal from the hospital for some reason. I'll put the blog on today as soon as I get a chance.

Everything is 100% on track and I am doing fine. =)
 
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So how many chemo infusions in total for the whole process?

Thanks for these posts. Feel like I am right there with you. Very informative! Hope you keep doing well!!
 
Hey Zig,

So happy to hear from you! It's sounding,as Claire said, BRILLIANT. I am so hoping that the smooth sailing continues unabated, for you and your chums. Again, Zig, thank you so much for inviting us along for the ride, it's priceless.

If any of you wouldn't mind saying, a quick prayer for him too, I know that would be greatly appreacited.
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No worries mate, my pleasure and privelege. Here's a few good lucks to go along with it.

:goodluck::goodluck::goodluck::goodluck::goodluck::goodluck:

Take care Zig,
Dusty
 
CrohnsHobo said:
So how many chemo infusions in total for the whole process?

Thanks for these posts. Feel like I am right there with you. Very informative! Hope you keep doing well!!
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All together 9 (at different lengths, and different strengths. - Cytoxin in the beginning to stimulate stem cell/white cell count, before mobilization (The stem cell harvest from the body. appox 4 weeks ago). Then these 3 different chemos now (Cytoxing, Rituxan, and Rabbit ATG) each during different days (some days, 2 chemos will be combined) through the 7 days straight to destoy immune system (which I am in day 2 of). Then one more time, on this 8th day (the day to re-infuse my stem cells which had been harvested), primarily to stimulate new stem cell growth along with my stem cells and those nupigen shots again (which also help my body stimulate them. I hope this isn't to confusing, and I am more than glad to be giving back to the crohns community as you know. Let me know any other questions you might have. :)
 
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Claire617 said:
YAY! This is brilliant news :), the place doesn't actually sound too bad!
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Yes, I think so myself! I really do just feel more fatigued, but my crohn's symptoms seem to have improved. My buddy who had his re-infusion today (on day 8 for him) says that it went like that for him too - Feeling more and more fatigued as chemos went on, but continued to get better. In his words, he said his crohn's symptoms "have improved 100% since he started the trial" already. The hospital is great - The food does taste really great, and this big t.v makes me feel at home somewhat.
 
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DustyKat said:
Hey Zig,

So happy to hear from you! It's sounding,as Claire said, BRILLIANT. I am so hoping that the smooth sailing continues unabated, for you and your chums. Again, Zig, thank you so much for inviting us along for the ride, it's priceless.



No worries mate, my pleasure and privelege. Here's a few good lucks to go along with it.

:goodluck::goodluck::goodluck::goodluck::goodluck::goodluck:

Take care Zig,
Dusty
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So far so good! I am not done yet, but am more positive about this now than ever.

Thanks, my friend would appreciate those prayers foro him, and I certainly do too - He is a good guy.
 
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Awesome!! Mr Ziggy! Good to know after all this time you can see the progress heading in the right direction! Fingers crossed, for the future!

I also have to thank you for doing this, for the greater of mankind. Kudos!
 
Zig...Its sounds good so far..I have everything crossed here! :) I want this to be a great success story sooooo baddd!!! Are you at Northwestern in Chicago? Sue
 
Jettalady said:
Awesome!! Mr Ziggy! Good to know after all this time you can see the progress heading in the right direction! Fingers crossed, for the future!

I also have to thank you for doing this, for the greater of mankind. Kudos!
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Thanks so much Jetta Lady. I have much respect and gratitude, for a comment like that, coming from someone with over 35yrs of crohns symptoms. I'm glad to be of service, with the little insight I can bring of some hope to such an awful condition. :wink:
 
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Ok, so as promised, I got an answer to your question - Females can go and deposits eggs at a bank, but the doctors feel it's not necessarily a big concern, as the risk of turning infertile for a woman are just 2%.
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Thanks, Ziggy! So glad to hear that things continue to go well for you. I continue to send good thoughts and prayers in your direction. I do hope they offer this to the greater Crohn's suffering population soon, so that no one has to suffer any longer.

As always, I look forward to your future posts!

Take care,
Chris
 
Hey Zig, I was just catching up on the last few days for you. Glad you're back on track. On a personal note, EJ has primary sclerosing cholingitis (sp) and will eventually require a liver transplant. I was curious if you might ask if this would exclude him from stem cell therapy in the future? Thanks Zig for all you are going through and for taking the time to keep all of us in the loop!! You are quite an inspiration!!
 
Hey Zig,

Excellent to hear that you are still on a course to smooth sailing! YAY!

I continue to send healing (((THOUGHTS))) and (((HUGS))) your way and to your buddies as well.

:hug::ghug::hug::ghug::hug::ghug::hug::ghug::hug:

Thinkin' about you Zig,
Dusty
 
@ Zig - I have been following your post with thr utmost admiration. Before I had my total proctocolectomy two weekes ago I researched the stem cell venue but my colon was so bad that I could not wait any longrer.
I wish you the best of positive thoughts
 
Don't know if this has already been said, but what is the cost of a procedure like this? I'm guessing it would be ridiculously expensive and insurance would probably never cover it.
 
Dexky said:
Hey Zig, I was just catching up on the last few days for you. Glad you're back on track. On a personal note, EJ has primary sclerosing cholingitis (sp) and will eventually require a liver transplant. I was curious if you might ask if this would exclude him from stem cell therapy in the future? Thanks Zig for all you are going through and for taking the time to keep all of us in the loop!! You are quite an inspiration!!
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You know Dexy, I can't tell you how sorry I am to hear about your son... The main doctor (Burt) who would be the one to answer this question, is not here on the weekends. A nurse was nice enough to let me know that she has seen some patients come in after previously having a liver transplant, and had proceeded to have a successful stem cell transplant here. She had even seen one patient who had just gotten out 2 weeks post liver transplant, and then come here for a stem cell transplant. However I will PM you with what doc Burt says when I ask him on Monday. That is were I can find a definite answer to your question. I will keep your son in my prayers.... He looks like a wonderful kid.
 
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phillycrohns said:
Thanks, Ziggy! So glad to hear that things continue to go well for you. I continue to send good thoughts and prayers in your direction. I do hope they offer this to the greater Crohn's suffering population soon, so that no one has to suffer any longer.

As always, I look forward to your future posts!

Take care,
Chris
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Chris,

Thanks for the positive thoughts and welcomed prayers.

I too hope they get this off the trial phases as soon as they can. I don't think the procedure has been nearly as bad as I was expecting. Everyone is on top on things here, and the nurses are great.

I'll get some blogs up in the morning for ya.
 
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acg101 said:
@ Zig - I have been following your post with thr utmost admiration. Before I had my total proctocolectomy two weekes ago I researched the stem cell venue but my colon was so bad that I could not wait any longrer.
I wish you the best of positive thoughts
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Wow, acg, Im sorry they couldn't get you in sooner... I'm going to be sending you a PM in the morning. Thanks for your positive thoughts. I couldn't imagine being 2 weeks post proctoctolectomy. You must be a super strong person - hang in there. You'll be in my thoughts and prayers.
 
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Mr. Ziggy said:
You know Dexy, I can't tell you how sorry I am to hear about your son... The main doctor (Burt) who would be the one to answer this question, is not here on the weekends. A nurse was nice enough to let me know that she has seen some patients come in after previously having a liver transplant, and had proceeded to have a successful stem cell transplant here. She had even seen one patient who had just gotten out 2 weeks post liver transplant, and then come here for a stem cell transplant. However I will PM you with what doc Burt says when I ask him on Monday. That is were I can find a definite answer to your question. I will keep your son in my prayers.... He looks like a wonderful kid.
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Thanks Zig, I can't tell you how much hope you've just given me. God bless you my friend!!!
 
Just read all 5 pages. Good luck Ziggy and thanks for the information! There is light at the end of the tunnel. So glad they allow stem cell research as I know lots of religious folks are very against it.

I'm knew around here so I don't know your history. How many and which operations if any have you had?
How has your diet changed since you have had crohn's?
Have you tried to control it just by diet?

Wishing you all the best!
 
Ziggy, can you link me to some of the research you have done on Stem Cell transplants? I've been able to find a bit on my own, just wondering if you were able to find stuff that I couldn't.
 
Hungry said:
Just read all 5 pages. Good luck Ziggy and thanks for the information! There is light at the end of the tunnel. So glad they allow stem cell research as I know lots of religious folks are very against it.

I'm knew around here so I don't know your history. How many and which operations if any have you had?
How has your diet changed since you have had crohn's?
Have you tried to control it just by diet?

Wishing you all the best!
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When you say folks are against it, I think you may be thinking of embroyoinic Stem cell transplants or stem cells from other people. I don't want anyone to get confused with what I am doing. I am having MY OWN stem cells taken from me and put back in. They are my own. There are no religious folks against this.
 
Hey Zig...Let me know when you are in Michigan! I am so happy to hear you are doing well! You are so darn positive. Must be the meds! :) Any how, keep posting...we'll keep reading...Take care my friend..Great Hospital, Dr With Great Credentials! You are a lucky man! S
 
Hi Zig, been keeping tabs on this post for a few weeks now. Thanks for all the info, its much appreciated! :D

I was just wondering if you knew/could find out if having an ileostomy and being currently healthy excludes you from a transplant?

Hope all is well and take care! :)
 
Tue, July 27 - Stem Cell Infusion Day.

Today at 11am is when I will be getting my stem cells which were previously harvested, infused back in me. It's the big day you will wait for, as this would be the start of your new immune systems introduction, without active crohn's. I said a prayer this morning, and before the infusion, I will have the stem cells blessed. It is an option they will ask you here, that I thought was really nice.

I will update later and tell how they administed the procedure and how it went. So wish me luck - I am pretty excited! :)
 
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Hi Zig,

It's good to hear from you again about your journey. I'm so relieved that everything continues to go according to plan.

Are you OK???

Always in my thoughts Zig,
Dusty
 
This is truly a remarkable break through, sending you hope, thoughts and hugs! You know we are behind you 100%...so amazing, and exciting
:goodluck:
 
Sorry Zig, your second post came in as I was writing my first!

I wish you all the very best of luck mate - and I am also excited for you!


:goodluck::goodluck::goodluck:


Saying prayers for you Zig,
Dusty
 
DustyKat said:
Sorry Zig, your second post came in as I was writing my first!

I wish you all the very best of luck mate - and I am also excited for you!


:goodluck::goodluck::goodluck:


Saying prayers for you Zig,
Dusty
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Thanks for your support all along this way DustyKat. It's been nice having you around :)

I know today will be a good day!

Thanks for the prayers!
 
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Jettalady said:
This is truly a remarkable break through, sending you hope, thoughts and hugs! You know we are behind you 100%...so amazing, and exciting
:goodluck:
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Very exciting, Ms pen, - I feel real lucky to be here. I hope this therapy continues to evolve. My doctor said they keep getting better and better as they go with these transplants. He says he is confident to get even better numbers as he goes on.

Thanks for your support Ms Pen. :)
 
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What an absolutely inspiring blog. I have learned so much about both stem cell transplant, and about the human spirit. Reading your posts have left me in tears yet full of hope for both your future and and the future of alll Crohnies. Congratulations on your re-birth day! And thank you so much for taking the time to share your amazing story with all of us.

I can't wait for more trials and more stories of curing these diseases.
 
Hey Zig, I want to thank you once again for going far above and beyond all reasonable expectations. I wanted to say this here rather than in our private notes just so everyone else can appreciate the effort you have made to respond so thoughtfully to well-wishers and those like me with other questions. I am encouraged by what you found out about EJ's liver condition and the possibility of a future stem cell transplant. I trust your transfusion went well today and wish you only the best. You are truly deserving my friend. God Bless!!!
 
ThanksP said:
What an absolutely inspiring blog. I have learned so much about both stem cell transplant, and about the human spirit. Reading your posts have left me in tears yet full of hope for both your future and and the future of alll Crohnies. Congratulations on your re-birth day! And thank you so much for taking the time to share your amazing story with all of us.

I can't wait for more trials and more stories of curing these diseases.
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Wow, thanks so much for such nice words. It made me feel really good to read your post. I have been eating solids already, and impossible as it might seem, my digestion is 100% better than when I came in here (I was not digesting anything). Definitely very promising for the future of all crohnnies in my book already. You are very welcome for the story - I am more than glad I made/making it.
 
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Dexky said:
Hey Zig, I want to thank you once again for going far above and beyond all reasonable expectations. I wanted to say this here rather than in our private notes just so everyone else can appreciate the effort you have made to respond so thoughtfully to well-wishers and those like me with other questions. I am encouraged by what you found out about EJ's liver condition and the possibility of a future stem cell transplant. I trust your transfusion went well today and wish you only the best. You are truly deserving my friend. God Bless!!!
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Thank you so much for your well wishes - and it was my pleasure to help your son in any way I can. A partial liver transplant from a living donor would be much better than a liver transplant from a non-living donor (according to the doc here). Meaning, that it would be best if the donor was alive with a beating heart as apposed to a liver from somone who is deceased. I am very happy to hear that EJ is doing well - and I my hope and prayer is that if there ever comes a day when that changes, that we have some really promising treatments available for him to live a life that is disease free.
 
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Mr. Ziggy said:
Thank you so much for your well wishes - and it was my pleasure to help your son in any way I can. A partial liver transplant from a living donor would be much better than a liver transplant from a non-living donor (according to the doc here). Meaning, that it would be best if the donor was alive with a beating heart as apposed to a liver from somone who is deceased. I am very happy to hear that EJ is doing well - and I my hope and prayer is that if there ever comes a day when that changes, that we have some really promising treatments available for him to live a life that is disease free.
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Thank you Zig!!!:):). We have been told by EJ's liver spec that his condition is one that should allow for a live lobal transplant. You are truly awesome my friend!!!
 
@ Ziggy - I am reading your post and praying hard for you to heal and the Crohn's to go away. You are an inspiration of courage and perseverence. I forwarded Dr Burtz web site to a friend who have a daughter with MS and they are looking into joining the program - thanks!
I hope you have a restfull night, sending you positive thoughts and a big hug.
 
Hey Zig,

Stopping by again to see how you are getting on and I'm so happy to see that everything remains on track, YAY!. I continue to send HEALING (((HUGS))), (((PRAYERS))) and (((THOUGHTS))). :hug::hug::hug::hug::hug::hug:

I wish more than anything for things to stay on course.

:goodluck::goodluck::goodluck:

Thinkin' about you Zig,
Dusty
 
Go Zig Man

Well...I am off the computer a few days and wham! I missed your Second New Birthday!!! Congrats! I am so excited for you! Looking forward to a bright future with less potty visits I bet!!! You are an inspiration to us all. Sue:goodluck:
 
WOW! I have just read all six pages in one go and am truly inspired by your journey and thank you from the bottom of my heart for taking the time to keep in touch. Our daughter Megan was diagnoised in May with Crohns - a big shock to say the least. I am a positive person with hope in my heart, today hasn't been great for me as she faces an operation in 2 and a half weeks but your story has given me so much hope for the future.
Meg is 16. I wish you all the luck in the world Ziggy and again thank you. xxxxxxx
 
The other night my mom and I sat here and read all six pages. I really would like to do this. I haven't had crohn's that long 5 years on the 15 August. You have given me so much hope. I can't wait for an update. :goodluck::ghug:
 
Really interesting read, I was all set up to have this done myself in Nottingham, England and was really looking forward to it (sounds funny as it's such a harsh treatment but I'd gone so long without needing surgery it was like the light at the end of the tunnel for getting my life back) BUT just before I was due to start the treatment I was in Hospital and had a CT Scan which showed an Abcess on my Colon and my Colon was so diseased they couldn't just get rid of the abcess so I had to have an Emergency Ileostomy as the Abcess was ready to burst at any time! So that threw the Stem Cell Treatment down the pan for me.
 
I was exactly the same Rob I'd got in contact with the guys in Nottingham and pushed to go forward with it but I was too underweight too qualify for the treatment so had a resection in the end... I do know what you mean though by being almost excited by this treatment, now I feel a hundred times better it's certainly playing in the back of my mind of it being an option one day.

I really do hope all is well Mr.Z :)
 
That Prof Chris Hawkey in Nottingham is a right Character ain't he :D
I do still hold out some hope, like yourself that if my Crohns did come back again, this treatment could still be an option.
But as dissapointed as I was that I had to have an Emergency Ileostomy so was no longer able to have the Stem Cell treatment, my life is still a million times better now than I can ever remember it being.
 
No update for a while. Hope you are doing ok Ziggy?
I can only begin to imagine how difficult this process is both physically and mentally.

Is there anyone else following this that has applied for stem cell treatment?
 
Thanks!

Thanks to everyone for your kind words and encouragement - It is really comforting.

I have not responded lately, just because of the fatigue that set in about a week ago. I wanted to have the energy to write decent blogs, and not miss anything important. I have been back home now for 3 days! It feels great to be back home, and get some good rest in my bed! =)

I handled the transplant really really well! I thought the whole process was going to be WAY worse than it was. I would say that the worst days through the transplant couldn't compare to my worst days with crohn's - not even close. The fatigue gets really bad at times, but that is about it for me. I will still write some blogs on the days that I took notes, when I get more energy. However, there are really just 2 main stages that i feel are important after my last blog.

1. The day I turned neutropinic, meaning my levels of immune system were at their lowest. For me this happened 2 days after the stem cell transplant.

2. Engraftment day - This is the day you wait and wait for, after turning neutropinic. It is when your levels start to come back up, indicating that your immune system is now on its way, trying to make a recovery. This happened 5 days after I turned neutropinic.

I went home a couple days after engraftment! =)

Thanks again to everyone for staying turned. Let me know if you have any questions - Everyday now I have more energy, so I can get to them a bit sooner!
 
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acg101 said:
@ Ziggy - I am reading your post and praying hard for you to heal and the Crohn's to go away. You are an inspiration of courage and perseverence. I forwarded Dr Burtz web site to a friend who have a daughter with MS and they are looking into joining the program - thanks!
I hope you have a restfull night, sending you positive thoughts and a big hug.
Click to expand...

I am really glad to hear this blog has/could help someone. They are really successful with their MS patients! You have to come in before any major damage has been done. If you do so, the numbers looks just as good. Please Keep me updated, if your friends daughter does go through with it. The process for MS is almost identical to the process I went through. Let your friend know I am here for any question they might have on the transplant, even though our conditions are different. Thanks for your support Acg!
 
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Dallies said:
WOW! I have just read all six pages in one go and am truly inspired by your journey and thank you from the bottom of my heart for taking the time to keep in touch. Our daughter Megan was diagnoised in May with Crohns - a big shock to say the least. I am a positive person with hope in my heart, today hasn't been great for me as she faces an operation in 2 and a half weeks but your story has given me so much hope for the future.
Meg is 16. I wish you all the luck in the world Ziggy and again thank you. xxxxxxx
Click to expand...

Sorry to hear about your daughter =(
This transplant does bring a lot of hope, and it can only get better with time. Hang in there, I know at times this disease can bring you down. Just try not to let it keep you down. I will keep your daughter in my prayers - I hope her ops go through with good success and a speedy recovery!
 
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britt_l_andy said:
The other night my mom and I sat here and read all six pages. I really would like to do this. I haven't had crohn's that long 5 years on the 15 August. You have given me so much hope. I can't wait for an update. :goodluck::ghug:
Click to expand...

You can do the transplant! It's just a matter of making that decision for yourself. For me I did my research, looked at the numbers, made my decision, and never looked back. Now that I am finished, I have no regrets. I took 2 months out of my life, it was a bit rough, and now I have an 80% chance of remission and a brand new linning of mucosa to expect in 5 weeks. If you do go foward with it, you can always PM me with questions you have. Good luck to you :)
 
Mr. Ziggy said:
Sorry to hear about your daughter =(
This transplant does bring a lot of hope, and it can only get better with time. Hang in there, I know at times this disease can bring you down. Just try not to let it keep you down. I will keep your daughter in my prayers - I hope her ops go through with good success and a speedy recovery!
Click to expand...

Thank you, that means a lot to me. It's great to hear from you xxxxxx:ysmile:
 
Dear Mr Ziggy Stardust!

I have just read all of this in one go! Can't believe I've missed it!
It is a Space Odyssey, the stuff of SciFi movies! I can't believe it's really happening!
It makes my heart race! It takes my very breath away! Are we really this close to a cure?
It's people like you, brave, intelligent and funny, that we have cures for some horrific diseases, people like you who are doing this for us! You could be called a guinea pig, a fool, deluded by the sceptics, but to me, you're our hero!
I wish you so much luck and love in this very important journey!
I look forward to reading the next bit with bated breath!
Take care Ziggy Stardust!
lotsa luv
Joan xxxx
 
Rob.G said:
Really interesting read, I was all set up to have this done myself in Nottingham, England and was really looking forward to it (sounds funny as it's such a harsh treatment but I'd gone so long without needing surgery it was like the light at the end of the tunnel for getting my life back) BUT just before I was due to start the treatment I was in Hospital and had a CT Scan which showed an Abcess on my Colon and my Colon was so diseased they couldn't just get rid of the abcess so I had to have an Emergency Ileostomy as the Abcess was ready to burst at any time! So that threw the Stem Cell Treatment down the pan for me.
Click to expand...

So just a question - Not that you would want to go through all this trouble but, I can't see why they couldn't do a stem cell transplant, and then do a J-pouch or something after, to reverse the ostomy? Maybe you might want to look into that if your crohn's every comes back?
 
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Claire617 said:
I was exactly the same Rob I'd got in contact with the guys in Nottingham and pushed to go forward with it but I was too underweight too qualify for the treatment so had a resection in the end... I do know what you mean though by being almost excited by this treatment, now I feel a hundred times better it's certainly playing in the back of my mind of it being an option one day.

I really do hope all is well Mr.Z :)
Click to expand...

Thank you Claire! I am feeling about 70% as far as my energy levels now. Skin irritation do to my crohns is completely gone. Still have a bit of diarea now do to the chemo, which strips your lining. It's expected. 5 more weeks and I should start feeling better (if I am in that 80%) just like the others did. However, the other guy who had this transplant for his crohn's with me, just told me today he had his first normal bowel movement in 23 years!!
 
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Astra101 said:
Dear Mr Ziggy Stardust!

I have just read all of this in one go! Can't believe I've missed it!
It is a Space Odyssey, the stuff of SciFi movies! I can't believe it's really happening!
It makes my heart race! It takes my very breath away! Are we really this close to a cure?
It's people like you, brave, intelligent and funny, that we have cures for some horrific diseases, people like you who are doing this for us! You could be called a guinea pig, a fool, deluded by the sceptics, but to me, you're our hero!
I wish you so much luck and love in this very important journey!
I look forward to reading the next bit with bated breath!
Take care Ziggy Stardust!
lotsa luv
Joan xxxx
Click to expand...

Thank you so much Joan. Those are very thoughtful and generous words =)
The procedure really is something amazing and ground breaking as far as crohn's goes. Doctor Burt is amazing in the things he is accomplishing when it comes to autoimmune diseases. He is now having success with diabetes and stem cell transplants! The only thing is, that he has to fly to S. America to do this, as this FDA won't allow him to perform those trials on diabetes patients just yet!

Again, thank you for your kind words - It means a lot! =)
 
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Mr. Ziggy said:
Thank you Claire! I am feeling about 70% as far as my energy levels now. Skin irritation do to my crohns is completely gone. Still have a bit of diarea now do to the chemo, which strips your lining. It's expected. 5 more weeks and I should start feeling better (if I am in that 80%) just like the others did. However, the other guy who had this treatment for his crohn's with me, just told me today he had his first normal bowel movement is 23 years!!
Click to expand...

Awesome~ I think about you and your journey all the time. I hope this is a cure and happens in my lifetime. Canada is like a snail for approvals. You deserve so much credit. I am keeping my fingers crossed always. You are an inspiration!:award2:
 
i just read all of this. i just want to say im so freaking proud of you. you are amazing for doing this. not only for yourself, but you are helping all of us. this is truly amazing i am just stunned while reading all of this. ive been through pretty much everything in the past ten years. im about to start humira this week. hope that helps. never had surgery tho..

looks like your doing very well! can't wait to see how you and the other patients turn out. thanks again for doing this. its just amazing.
 
Thanks so much for documenting all of this, Mr. Ziggy! I've been following your posts with great interest. Congratulations on making it through so much already.
 
5 more weeks and I should start feeling better (if I am in that 80%) just like the others did.
Click to expand...

Hi Ziggy:

So glad that you are doing well! I hope you continue to get better. I have a quick question. Based on what you said, it sounds like 80% of people respond to this therapy. What about the other 20%? What do they experience? Just curious.

Hope you keep healing!
Chris
 
Jettalady said:
Awesome~ I think about you and your journey all the time. I hope this is a cure and happens in my lifetime. Canada is like a snail for approvals. You deserve so much credit. I am keeping my fingers crossed always. You are an inspiration!:award2:
Click to expand...

Thank you Jettalady :) . I don't need an award. Knowing that I could potentially help just 1 person out there with this blog, makes it all worth it :)

I believe it will be available in your lifetime, I truley do.
 
JUSTINtime. said:
i just read all of this. i just want to say im so freaking proud of you. you are amazing for doing this. not only for yourself, but you are helping all of us. this is truly amazing i am just stunned while reading all of this. ive been through pretty much everything in the past ten years. im about to start humira this week. hope that helps. never had surgery tho..

looks like your doing very well! can't wait to see how you and the other patients turn out. thanks again for doing this. its just amazing.
Click to expand...

Thank you Justin. I hope Humira works for you. Sounds like you may be a candidate for the Transplant if Humira doesn't work for you. Just keep that in mind. I know how frustrating it is when you get to that point where you have exhausted every option of treatment. The last thing I tried was Cimzia. Hopefully you will never need surgery!
 
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Kelly said:
Thanks so much for documenting all of this, Mr. Ziggy! I've been following your posts with great interest. Congratulations on making it through so much already.
Click to expand...

You are all welcome Kelly. I am glad I could draw so much intrest, and that you can enjoy my blog!

Thanks, I will keep you all posted :)
 
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