# My Stem Cell Journey



## Guest9283

...
I've edited a lot of personal posts.


----------



## Guest9283

*Introduction*

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.


----------



## Guest9283

Tomorrow will be the first day I will actually have time to put blogs down of the days i have been here, but I'll put down 6 days or so worth to catch up! Just TONS & TONS of tests and a few roller coaster rides due to those nodules on my lungs. First Chemo Should start monday. It was supposed to be today but I'll get you all caught up tomorrow. Head is shaved and ready to rock and roll!


----------



## Liverpool FC

You truly are a brave man and very inspirational with your great attitude and high spirits.  I hope and pray all goes well and the treatment is every bit as successful as possible.

Do you have any rough idea of how long it will be until you are hopefully well-i know that it is very dependant on many factors, but generally is it 6 months of treatment etc?

Hope the test results are favourable too, really look forward to hearing more!


----------



## Guest9283

Liverpool FC said:


> You truly are a brave man and very inspirational with your great attitude and high spirits.  I hope and pray all goes well and the treatment is every bit as successful as possible.
> 
> Do you have any rough idea of how long it will be until you are hopefully well-i know that it is very dependant on many factors, but generally is it 6 months of treatment etc?
> 
> Hope the test results are favourable too, really look forward to hearing more!


Thanks! Knowing I can be an inspiration in any slightest way is the biggest motivation I could receive. I truley believe the hardest part about the transplant for anyone considering doing it is the emotional part, and keeping that positive attitude. 

To answer your question the transplant process is around 2 months. You come up to chicago for one week of pre-transplant testing. You go home for 10 days, come back for two weeks to harvest your stem cells. Go home for another two weeks, and come back for a final three to four week final transplant phase. After that they say the rule of thumb is to stay as sterile as possible for 3 months while your immune system builds itself up. That is standard protocal right now. However it is constantly changing as they fine tune the transplant procedure. Also as you mentioned though everyone is a bit different, responds differently, so just keep that in mind when I try to answer this question. I can tell you my stay in Chicago has so far been a great experience.

Thanks for the encouragement!


----------



## Guest9283

*Monday May 31st*

Early this morning, I was discharged from the hospital in Texas, in order to catch a direct flight to Chicago, and a cab directly to Northwestern Hospital where I was admitted upon my arrival..  I had a picc line in so we just capped off the lines for my flight.  I must say I was VERY impressed with the facility, and they probably have the largest bathrooms I have ever seen in any hospital!  The staff went above and beyond to make sure l felt as comfortable as possible. I feel tired due to not having any nutrition today.  The TPN will arrive tomorrow – so in the meantime, I just drank a few watered down Peptamen 1.5 cans.  I just hope they can figure out what is going on in my lungs, and I can get all the pre-transplant tests done, and be given a green light to get this done.


----------



## Guest9283

*Tuesday June 1st*

Today I met the 3 doctors running the trial and they basically went over everything with me.  I was given a transplant calendar of what to expect and they really made me feel like I was in good hands! They went over all the medications I needed, and explained to me all the tests they will be running this next week. They were not kidding when they mentioned how thorough  they take all the testing to make sure I am in absolutely ideal shape - making sure I don’t have any sign of infections at all. As soon as they left, a dentist and his tech came into my room with an x-ray machine and instruments.  He spent almost an hour taking x rays and poking and proding (not painful at all)around in my mouth until he was satisfied with his assessment.  Next on the schedule was x-rays of the chest, lungs and everything else you can imagine. I already had a picc line in, so they had my tpn and lipids ready and waiting when I got back to my room.  First, I filled more blood vials for tests, than I had even done in a single sitting – and that’s saying A LOT lol.  At the end of the day, I felt very tired, but all for good reason!  They told me there would be more tests to be completed over the course of the next couple of days.  
So good night, I’ll report back to you all tomorrow gang! I asked for an ambian and it has started  kicking in ZZZZzzzzzz… =)


----------



## Guest9283

*Wednesday June 2nd*

...


----------



## Guest9283

*Thursday June 3rd*

This morning,  my vitals at 7am showed that my blood sugar was low and needed some insulin.  So, I made a hot cocoa and that rectified my blood sugar levels. Then, it was time for more blood work – suprise surprise lol.  However, today my picc line was being stubborn and wasn’t about to give up any more blood too easily.  So, they put heparin in the line, and came back and received their mountain of blood vials again. Pulmanory came in and told me that I will have a broncoscopy tomorrow to see if those cultures have grown around my lung nodules. They want to make sure I don’t have an infection in my lungs and are hoping the infiltration seen on my scans from Texas is just crohn’s like they think.  As I said, they are being extra extra pre-cautious. Based on what they see, they might have to go in with tubes between my ribs to perform an open lung biopsy the day after. They also ordered a CT of the chest today. Crossing my fingers everything is fine and we can proceed!! I love the staff and all the nurses here, just had to give them all a second mention for their attitude/patience and overall general caring/understanding. Going to bed, can’t wait to get all these tests done…. Ready to get the show on the road!


----------



## Guest9283

*Friday June 4th*

Well, today the pulmonary docs came in and said that the ct scans showed that the nodules are getting better ,and it looks like after talking to 5 teams of different doctors (Infectious Disease, Internal Medicine, Pulmanory, Hematology, Gastroentorology,) they came to the conclusion that it looks to be crohn’s related. They then told me they were going to start Mobilization/chemo today!!! After a long day of more last minute testing, while waiting on insurances approval, we didn’t get word back from them.  Looks like they went home early for the weekend (cough cough).  I was then told I was to be discharched tomorrow (Saturday) and re-admitted Monday for the chemo/Mobilization – due to not hearing back from my medical insurance company.  Apparently, they are closed over the weekend, and will only be back on Monday. What a drag – I was pumped and ready - shaved head and all…


----------



## Guest9283

*Saturday June 5th*

...


----------



## Guest9283

*Sunday June 6th*

Sunday the day of rest! That’s exactly what it was today for me. I slept the entire day and it felt good. Had the Picc line team come and make sure I could work the Pump ok, and they delivered some more supplies. As weird as it sounds, Im excited for tomorrow to come around. I know I’ve got a lot of prayers behind me, good support system, and I can’t wait to get it over with! Wish me luck!!!


----------



## DustyKat

I wish you all the luck in the world and my thoughts and prayers are with you. Thank you so much for giving us such a personal insight into your journey. I'm staying tuned for the next instalment! All the best.


----------



## belle1999

Good luck!


----------



## Guest9283

belle1999 said:


> Good luck!


Well thank you Bella! 
Actually they could not find a room for me yesterday(monday) on such short notice from of the time the insurance approval. So I am actually doing the chemo through my picc line right now as I type this.


----------



## CrohnsHobo

My last post got diverted in the forum switch over. 

But thanks for posting all of this. My Dr. at UCLA mentioned going to Chicago for this if Humira fails (already failed a ton of other drugs). 

Nice to hear a first hand account. I hope it does great for you. You have already showed so much patience and grit, so I am sure it will!


----------



## phillycrohns

Wow!  I admire your fighting spirit.  This sounds very exciting and promising.  I hope you will indeed be cured!  That will give the rest of us hope.  Good luck and keep the posts coming.  My thoughts and prayers are with you.

Chris


----------



## Sue-2009

I haven't been on in a loooonnng time.  I felt good for a while.  Oh well.  I am so sorry to see you are young and sick!!!  I'm a little--okay 20 plus more than you.  But, any way, what hospital are you having this all done at?  They will do the transplant to?  Sue


----------



## Guest9283

..


----------



## Manzyb

Hey! 

Best of luck to you!  I am looking forward to hearing how the rest of the transplant goes for you.  I think its safe to say that we are all pulling for you!!  Thanks for posting your experiences with this for us to see.

Amanda


----------



## Guest9283

DustyKat said:


> I wish you all the luck in the world and my thoughts and prayers are with you. Thank you so much for giving us such a personal insight into your journey. I'm staying tuned for the next instalment! All the best.



Sorry I missed your post Dusty. 

Thanks, I'll accept those prayers anyday! 
Also thank you for your kind words. Knowing that some of you ARE actually interested in my blog gives me the encouragement to keep blogging. So on that note and with a few more responces i see - I'll spend some time updating what has gone on so far, how it has effected me and what my thoughts are. Have a good day and god bless Dusty!


----------



## Crohn's 35

Yeah how do you feel? Any side effects? Best of luck!


----------



## Guest9283

phillycrohns said:


> Hi Ziggy:
> 
> Wow!  I admire your fighting spirit.  This sounds very exciting and promising.  I hope you will indeed be cured!  That will give the rest of us hope.  Good luck and keep the posts coming.  My thoughts and prayers are with you.
> 
> Chris


Chris, my fighting spirit has to be in all us crohnnies, but I'll accept the gracious comment =) . Chris I believe this is THE MOST exciting and promising treatment to ever come across Crohn's disease, and all it can do is get better and more refined as time passes. I got discouraged a bit with the few responces in the beggininng, but I'll keep the post flowing now. Again, I'll accept all those kind prayers - Thank you sir!


----------



## Guest9283

Manzyb said:


> Best of luck to you!  I am looking forward to hearing how the rest of the transplant goes for you.  I think its safe to say that we are all pulling for you!!  Thanks for posting your experiences with this for us to see.
> 
> Amanda


You are very welcome Amanda, and thank you!


----------



## Guest9283

Jettalady said:


> Yeah how do you feel? Any side effects? Best of luck!



I feel fine. Just a bit tired - some fatigue but that it really 
More coming up Ms. Jetta! Stay tuned =)


----------



## Guest9283

*Wednesday, June 9th (Chemo)*

CHEMO day!!
So around 7pm after consulting with my docs and just going over what was to happen, the nurse came in with a few liquid IV bags. She casually started hooking it all up. They run a couple meds here with the chemo, however this is the basic run down :

1) The chemo to lower my immune system – which is only run over a 2 hour infusion

2) A med that is infused to protect my kidneys – which is run over the next 24 hours

3) A med that is infused to protect my bladder – run over the next 24 hours

4) Saline – depending on blood work and kidney function

5) A diuretic  – run a bit later to expel liquid from your body since they are having to pump so much into you. This will make you urinate ALL night long lol.

6) A drug to calm you – I didn’t ask for it nor felt I needed it, but it is protocol.
You may ask for other things like valium for anxiety, or a bunch of other meds for nausea. I wanted to "experience" the chemo with a clear mind and didn’t ask for anything except some nausea med just in case.

What did I feel from the chemo??   --- NOTHING! Honestly if it were not for the fact that I had to pee every hour, you could have told me I was receiving saline only, and I would have believed you. Not all cases are like this, but all 3 people with crohn’s doing this during my stay felt the same. As I have said before I really think your mind set will be biggest hurdle during the whole transplant. However there is more to this chemo process but as for chemo blog day that’s it! TIPS – take valium if you are nervous, ask for ambian to sleep as some patients did during most of their stay. Although I can’t imagine being on ambian and having to wake up to pee every hour. lol They do ask that you flush the toilet twice after every use and wash your hands good, as any bodily fluids will have chemo in it for the next 48 hours. If you sweat during the night, any clothes that you are wearing will have to be washed separately. That’s it folks.


----------



## Guest9283

*Must be more to Chemo right?*

Yes there is, and I wanted to make a second post to explain this. After chemo your immune system will continue to go down and down until you reach your bottom – The most “dangerous” stage. This day that you hit bottom is called your neutropinic day. This generally happens between day 7-9 after chemo infusion. During these days you have to stay well sanitized and just be smart. You are given masks and such but generally that is all needed the closer you get to your neutropenic stage. You will have blood work taken everyday which will indicate exactly when you are neutropinic and the doctor will let you know. On this day you can pretty much EXPECT to run a fever, have the runs and generally feel fatigued as can be. Breaking that fever can take up to a day or so from what I have seen, but this does vary from person to person obviously. You stay sanitized and clean with masks and all so that during this day of neutropinic levels you have no infections and nothing else to fight off.  My day of being neutropinic will be anytime from this Tuesday to Thursday(June 15th – June 17th). Wish me luck. However I am not too worried – Im prepared and ready for it


----------



## Guest9283

*Thursday June 10th*

All that was scheduled for today was my vein check and a consult at the blood center. This is where they will place my IR-Vascath to draw my stem cells on Friday the 18th of June. They will go over everything today with me just so I understand the procedure and am comfortable with it, before that day comes. Basically on the actual day, they will place a line in my neck, and draw blood for 4-6 hours to collect my stem cells, then prepare them for harvest. Sound kinda scary to some of you? Don’t worry from my understanding, you will be sedated pretty good and can always ask for more sedation or heavier drugs. I myself will ask for the minimal, as again I just want to go through the “experience” so I am able to share it better with you all, and whoever might ask me about it in the future. I want to be able to say at the end of all this to those people who are scared and feel there is no hope, that  “If I can do it you can”


----------



## Guest9283

*Friday – Sunday, June 11th – June 13th*

Friday – Just had some labs to check all current levels and everything came back A-ok!

Saturday – Nothing happening, just keeping extra clean and cautious as I get closer and closer to turning neutropenic (should happen sometime tues thru wed).  I am monitoring my tempreture throughout the day, and have been instructed to call in if it goes over 100.


----------



## Guest9283

*Sunday June 13th*

Today is the day I have to start to take a couple meds.   Just some antibiotics and anti-fungal meds together with a daily shot that will increase production of my stem cells.  Hopefully there will be enough of them to collect on Friday when they harvest my cells. So -

7am This morning I started:
Neupogen shots – Increases white blood count/stem cell count
Cipro – We all know what this one is hopefully lol
Diflican – This helps fight off any fungal infections.
Flagyl – Again if we are considering an ASCT we know what this is lol 
I run these all for 7 days through and past my neupogenic stage. As you can see they are SO careful and pre-cautious which is how they have been throughout  this whole treatment.


----------



## DustyKat

Hi Ziggy,

If you don't mind me asking, how are you going emotionally? Do you have any family or friends with you?

Keeping my fingers and toes crossed that everything goes according to plan.


----------



## Dexky

Hey Zig, I'm surprised you aren't kept in isolation or something while your immune system is being destroyed.


----------



## CrohnsHobo

Glad to hear it is going well. When they take your blood they take it for 4-6 hours? That must be a ton of blood. 

Amazed how calm you are. I get nervous just reading this, but hospitals kind of freak me out in general.


----------



## Claire617

Good to hear things are relatively smooth , stay strong! We're all rooting for you!


----------



## Barbie

WOW you are truly inspirational. Please keep posting when you are able too and know that everyone is behind you. I had no idea this was possible. It's brave people like you that shape the future of medicine. You give us all hope and reminded me of this quote..... "Nothing is impossible - it just hasn't been done yet."  You can do it Ziggy x x


----------



## Guest9283

DustyKat said:


> Hi Ziggy,
> 
> If you don't mind me asking, how are you going emotionally? Do you have any family or friends with you?
> 
> Keeping my fingers and toes crossed that everything goes according to plan.



Great question Dusty! Emotionally I have prepared myself before hand as much as i possibly could before taking this route I chose(and believe in). I truly believe the emotional state is the hardest part about going through something this "extreme". However I have never been one to panic when in a crisis, nor get sad or depressed when times are rough...rather I seem to get a bit upset/angry, and then make a plan. After all is said and done, if things don't go my way, I eventually become content in knowing I tried my best. You can't control what life throws your way, but you can control your perception of any situation. Staying positive is key to this thearpy - I can't stress that enough to anyone considering taking on this ASCT.

Thanks again Dusty - It is very comforting knowing I have so many people behind me! =)


----------



## Guest9283

Dexky said:


> Hey Zig, I'm surprised you aren't kept in isolation or something while your immune system is being destroyed.


Dexky, During the next stage of chemo I will be isolation as stage 2 of chemo is 7 days.


----------



## Guest9283

CrohnsHobo said:


> Glad to hear it is going well. When they take your blood they take it for 4-6 hours? That must be a ton of blood.
> 
> Amazed how calm you are. I get nervous just reading this, but hospitals kind of freak me out in general.


Yeah and to boot, I hate needles lol. I was actually diagnosed with a "needle phobia"(yes there is such a diagnosis lol) when I was younger.I have gotten a bit better since then. I wouldn't say I am as calm as can be about it, but I am as ready as ever to get it done - Friday it will be!

 - I'll find out just how much blood they take out for ya lol.


----------



## Guest9283

Claire617 said:


> Good to hear things are relatively smooth , stay strong! We're all rooting for you!


Thanks so much Claire! Nice to hear from ya!


----------



## Guest9283

....


----------



## Barbie

I'm so glad you seem to be doing soo well, keep it up if you ever want to chat you know where we all are! I'm so glad I have found this site xx People are amazing x You are doing the RIGHT thing because you followed your instincts. Dont you dare let anyone tell you otherwise. Trust your voice x x You can do it!!!! xx (I know its easy for me to say cos Im not the one going through what you are but I think your a complete inspiration you deserve an award. Maybe they can award you a pride of crohn's award or something on here??? Stay strong cant wait to read more x x


----------



## Dexky

Hey Zig, from your earlier post on 6/13, you should be in your neutropinic phase.  It seems we are asking too many questions to let you update your progress.  How long will you be kept in isolation?  I hope you'll still be able to post during that time as it really has become fascinating to follow.  Good luck and keep us posted.


----------



## Guest9283

....


----------



## Crohn's 35

Wow, gone for a minute and I missed all this!  This is totally remarkable and I really hope this could lead to a cure some day.  I commend you for being one of the firsts to try this.  Keep it up, we are sending positive energy and hope!  I am so glad you were persistant to stay with us!  Good luck tomorrow!


----------



## Matt

Hey man I just want to say big thanks for posting all this and keeping us updated. I remember reading about the stem cell treatment a few months ago and I've been interested in developments since then.

I'l be following this thread and I hope it all goes as smoothly as possilbe for you 

Cheers,
Matt


----------



## Guest9283

....


----------



## Manzyb

Hey Ziggy!

It sounds like you are doing fairly well!  Keeping you in my prayers that all goes great for you!  I love reading your posts about how you are doing.  I love your take on things.  I, too, try to keep a positive attitude for the most part, but the crohn's gets into my head at times and likes to eff with me  :0)  

Keep on keepin' on!  

Amanda


----------



## Guest9283

*Monday June 14th*

Monday I did the Neupogen shots and antibiotic meds at 7am, and then went for blood work shortly thereafter.  Doctor called me back several hours later to inform me that all my levels looked good and that I am not neutropinc yet!  I spent the day away from public and kept as sanitized as possible.  I mainly just tried to keep myself occupied.  I kept up with the other crohn’s patients and, also did a bit of studying on a business venture I will be pursuing after the transplant (with my fellow transplant buddy).


----------



## Guest9283

*Tuesday June 15th*

....


----------



## Guest9283

*Wednesday June 16th*

....


----------



## Guest9283

*Thursday June 17th*

....


----------



## stylinmama

Wow! It's amazing that your doing this! I'm so glad you are posting this all here....you have alot of valuable information to share! 

Good Luck! I hope this works out for you ....and for everyone one else that may benefit from this trial!


----------



## louise32

Hi there Ziggy I am new to this site but alas not to crohns, I just wanted to say thankyou so much for your blog I have been very interested in stem cell therapy as a treatment for CD as my story is so much like your own especially the part where you could not absorb anything and became dehydrated kidneys failing extreme wieght loss etc and the subsequent lung problems so your blog is very much of great interest and if not for people like yourself others such as myself can find it very difficult to make a true informed choice when offerd different treatments, but with blogs like your own it gives us that bit more in the way of choice because while indeed everybody responds in different ways the procedure is the same, also they may find that they respond in a way similar to yourself which because of your blog and others like it they understand whats happening and it becomes less worrying so again thankyou so much for taking the time even though there are times when you must be exausted or feeling very unwell you are an inspiration. Thank You x also I hope eveything goes well for you!


----------



## Barbie

ziggy im loosing the words to speak..... your amazing! x


----------



## DustyKat

Thinking about you Ziggy. Hope all is going well.

Dusty.


----------



## donna martinez

i am keeping you in my prayers! i have been newly diagnosed with crohns and recently found research on the stem cell research but since i don't know if the treatment is going to work on me yet i'm not a candidate for a stem cell transplant.


----------



## Sue-2009

Ziggy!  I want to thank you from the bottom of my heart and toes!  It is people like you who have given us the meds today that have been able to help others with our disease.  I look as frequent as I can on line at everyones posts...Trying not to get to deep and overwhelmed.  But, bless you!  Keep posting because we are all cheering, watching and listening.  I am thankful to be in your audience.  Peace, Sue


----------



## CrohnsHobo

Hope the neck thing went well Ziggy! Thanks for the updates!


----------



## Dekar

Keep going!!! (give me some stock tips through PMs too LOL)


----------



## Guest9283

*Sorry for the delay folks*

Basically that next day (friday) I had my harvest done and then caught a flight back home. Well After not being home for 4 weeks there has been a ton of things keeping me away from responding. However, let me get to it!


----------



## Guest9283

Barbie said:


> ziggy im loosing the words to speak..... your amazing! x


Aww  I try my best.


----------



## Guest9283

stylinmama said:


> Wow! It's amazing that your doing this! I'm so glad you are posting this all here....you have alot of valuable information to share!
> 
> Good Luck! I hope this works out for you ....and for everyone one else that may benefit from this trial!


Yeah, I when I was first looking into it I couldn't find much information, and the blogs done in the past were great, but just not as detailed as I would of liked before I put my foot forward. So I figured I try my best to put that "detailed" blog I "was" looking for out there. We need more canidates for stem cell transplants, and to get these people, we need to educate them so they understand everything 100%. In my eyes, if(WHEN) this works out for me like I am hoping(expecting based on previous results ect) it would of all been 110% worth it, no doubt. The doc I have IS the leading doc in the world when in comes to stem cell thearpy. He has cured MS, Crohn's, Lupus, and the list and number just seem to be accumulating


----------



## Guest9283

louise32 said:


> Hi there Ziggy I am new to this site but alas not to crohns, I just wanted to say thankyou so much for your blog I have been very interested in stem cell therapy as a treatment for CD as my story is so much like your own especially the part where you could not absorb anything and became dehydrated kidneys failing extreme wieght loss etc and the subsequent lung problems so your blog is very much of great interest and if not for people like yourself others such as myself can find it very difficult to make a true informed choice when offerd different treatments, but with blogs like your own it gives us that bit more in the way of choice because while indeed everybody responds in different ways the procedure is the same, also they may find that they respond in a way similar to yourself which because of your blog and others like it they understand whats happening and it becomes less worrying so again thankyou so much for taking the time even though there are times when you must be exausted or feeling very unwell you are an inspiration. Thank You x also I hope eveything goes well for you!


Exactly my friend. Hopefully you get well. If not you will now have another story to base your decision on yet another great treatment for our disease.
I will keep you in my prayers buddy.

Thanks again.


----------



## Guest9283

DustyKat said:


> Thinking about you Ziggy. Hope all is going well.
> 
> Dusty.


Thanks 

Everything is going great. I feel like 100% to be honest...maybe a bit breezy with the hair gone though lol. I hope you are doing well too!


----------



## Guest9283

...


----------



## Guest9283

...


----------



## Guest9283

CrohnsHobo said:


> Hope the neck thing went well Ziggy! Thanks for the updates!


Piece of cake my man! I'll bring up the blog here in a sec.


----------



## Guest9283

....


----------



## Guest9283

*Saturday 19th*

...


----------



## Guest9283

*This is it. Here is the man! (Along with his website)*

http://www.stemcell-immunotherapy.com/

Everyone please take some time out to check this doctors web site out. His name is doctor Burt. He is the one saving mine and many other lives right now through the use of stem cell therapy. If we want this to become a cure thats as refined and easy for people with crohns/MS/Lupus ect we need to get the word out there and get more funding for this.


----------



## Guest9283

.?.


----------



## Dexky

It continues to be fascinating Zig.  Hope you enjoy your stay at home and I look forward to the next leg of your journey.  Stay well!!


----------



## Guest9283

Dexky said:


> It continues to be fascinating Zig.  Hope you enjoy your stay at home and I look forward to the next leg of your journey.  Stay well!!


Thanks so much for your stay here on my blog Dex. Yes it continues to fascinate me more and more each day as well. It was only a day or two ago that I caught the end of a story on the news where through some stem cell treatment they made a middle age guy that was completely blind, see again!!
Wow.

Right now I wish I could pass time and begin my next phase, but I have always been a bit impatient. lol


----------



## Crohn's 35

This could clearly be a breakthrough.  How does one sit for 3.5 hours without going to the bathroom?  I know you probably mentioned it, sorry if it has but are they using adult human stem cells or embryo stem cells?  

BtW I heard that bald was in lol, a little humour.  I still think this is amazing, I hope everyday for a cure, and maybe it is coming.  I still think you are brave.  I think we should be grateful for you doing this for mankind.  Thank you from the bottom of my heart.  Fingers crossed!!


----------



## DustyKat

> How does one sit for 3.5 hours without going to the bathroom?


Haha Jett, I was going to ask the same thing. Urinals and bedpans?

I am so happy for you that things are working out thus far and hope and pray they stay that way. Thank you so much again for allowing us this opportunity to read about your journey. There's nothing better than a first hand personal experience, warts and all!

Just one question. When it is all finished and if you respond (thinking positive thoughts here) favourably, how long before they will actually say you are cured and what tests do they use to determine that?

Take care and thinking about you Ziggy.
Dusty


----------



## belle1999

Glad to hear that things are going well so far Ziggy!


----------



## Claire617

Correct me if i'm wrong but to answer Jetta's question didn't you mention you have an ileostomy? 
I really am so pleased to read that everything is going well, I know if it was me i would regularly be having teary moments however if I ever do this I will certainly re-read your story to give me strength!


----------



## crohnicaly stinky

Ziggy, I just found this thread.  Read the entire thing and it's fascinating.  I'm praying for the best outcome for you.  

Your efforts to enlighten and inform this community and to stay as sober as possible to improve the information are nothing less than heroic.


----------



## Sue-2009

OMG!  Mr. Z,  I held my breath reading the entry about the catheter in your neck.  I would need to be medicated!  You are unbelievable!  Praise to you and your physician.  This is unreal.  I mean--for me--sorry to be selfish.  But, as I sit here in my mid 40's...Been diagnosed with Crohns last year who would a throught I'd be thinking this Zig man could be me in the futre.  Sorry to be selfish.  Back to you...I hope, sorry I am kinda ADD.  Didn't read every entry.  I hope that you have family and friends close to you as you go through these next steps.  This is hard for me to read...and I don't even know you!  I mean, heres a hug from Michigan...we are all here for you.  Stay strong....Wish I could do more.  Peace, Sue


----------



## Sue-2009

*Stem Cell*

Where is Zig Man???


----------



## phillycrohns

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


----------



## Walt

*cutting edge treatment...*

Greetings Mr. Ziggy,
I have been following this thread since the start, and have read every post.
It has been interesting, informative and encouraging!
I admire and applaud your brave and positive outlook.

Most often when we hear about 'attitudes', it is in a negative context.
Well, I gotta say, you have the most amazing and inspiring attitude I've seen in a Crohn's patient!

You give me hope that medical advances may someday wipe out my crohns,
which has been trying to wipe out me.

I hope that you are doing well.
Thanks for taking us along for the ride.
I am sure your "plate" is full, but give us an update when you find time.

Good show!
be well
Walt


----------



## Crohn's 35

Hi Walt, welcome to the forum!  I am glad you joined us and Ziggy posts from time to time, we all await his findings.

Please let us know how you are with your journey of Crohns on a Your Story thread so we can all welcome you.  Lots of info here, and nice people.

welcome aboard!


----------



## Sophia

Thumbs up for you, Ziggy!

Best of luck! Will be reading your story in here.

Hugs,


----------



## reidyjo81

First time I have read your story/blog. WOW is all I can. Big journey but sure it will be a great result at end. Good luck with everything and will keep reading

Jo x


----------



## CrohnsHobo

Thanks for the updates Ziggy. 

What is the next step once you go back in a month? 

It has been about a month since you started this treatment right? Just trying to get an idea of the full time frame of treatment.


----------



## Guest9283

....


----------



## Guest9283

...


----------



## Guest9283

belle1999 said:


> Glad to hear that things are going well so far Ziggy!


Thanks Belle!


----------



## Guest9283

...


----------



## Guest9283

Claire617 said:


> I really am so pleased to read that everything is going well, I know if it was me i would regularly be having teary moments however if I ever do this I will certainly re-read your story to give me strength!


Thanks Claire. Knowing that there might be a possibility of you reading this in the future if you have to, really solidifies my blog being here. So thank you, and I hope you stay well!


----------



## Guest9283

....


----------



## Guest9283

....


----------



## Guest9283

....


----------



## Guest9283

Sophia said:


> Thumbs up for you, Ziggy!
> 
> Best of luck! Will be reading your story in here.
> 
> Hugs,


Thanks Sophia!


----------



## Guest9283

reidyjo81 said:


> First time I have read your story/blog. WOW is all I can. Big journey but sure it will be a great result at end. Good luck with everything and will keep reading
> 
> Jo x


Thanks! My reaction when finding the results and numbers on stem cell treatments were also WOW. Just wish I would of had someone to post a detailed blog so i could of made this decision sooner.
Thank you for staying tuned!


----------



## Guest9283

CrohnsHobo said:


> Thanks for the updates Ziggy.
> 
> What is the next step once you go back in a month?
> 
> It has been about a month since you started this treatment right? Just trying to get an idea of the full time frame of treatment.


Yes, it has been just over a month since I started the treatment. I just arrived back in Chicago yesterday. The schedule for all of us is the same no matter when you or I had to start. I was supposed to get a picc line placed today just like the two other crohn’s patients here. Followed by 7 days of 2 different chemo medications, starting tomorrow. The day after the last chemo is when they infuse the stem cell back into your body. After that day, they  monitor you and your levels (white blood count etc) over a 10 day period. You are then discharged, with a follow up consultation with the doc 3 days later to go over everything, on how you have handled things and how you should proceed to take little precautions after you go home for the next couple months - Staying away from crowds, staying sanitized etc just like before. 2 days after that consultation you are free to go home. I myself had a minor set back that should put me around 10 days behind schedule, I will tell all in next post. Hope all is well.


----------



## DustyKat

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.


----------



## Crohn's 35

Hope you are feeling well now, I guess there will be minor glitches along the way. Keep us posted as much as possible!


----------



## Guest9283

*Minor set back.*

....


----------



## Guest9283

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.


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


----------



## DustyKat

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


----------



## crohnicaly stinky

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!


----------



## reidyjo81

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


----------



## Sue-2009

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


----------



## Guest9283

*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!


----------



## Guest9283

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


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!


----------



## Guest9283

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!


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!


----------



## Guest9283

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


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!


----------



## Guest9283

Jettalady said:


> Hope you are feeling well now, I guess there will be minor glitches along the way. Keep us posted as much as possible!


Feeling great, and ready to get the show on the road again! Minor glitches all out the way now! Thanks Jettalady


----------



## DustyKat

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


----------



## Dexky

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!!!


----------



## Guest9283

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


  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.


----------



## crampygut

I wish you the best of luck Ziggy! You are truely brave and I hope this ends your Crohn's Permanently.


----------



## Guest9283

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!!!


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.


----------



## Guest9283

crampygut said:


> I wish you the best of luck Ziggy! You are truely brave and I hope this ends your Crohn's Permanently.


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.


----------



## Entchen

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).


----------



## DustyKat

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


----------



## Guest9283

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


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%.


----------



## belle1999

Hey, zig. Just wanted to pop in and say hello and that I am glad things are going well for you!


----------



## Barbie

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


----------



## mharvey90

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!


----------



## Dexky

Hey Zig, hope you are well!!  It's been a few days.  Just worried about you and curious.  Keep us posted.


----------



## Guest9283

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


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??


----------



## Guest9283

....


----------



## Guest9283

Dexky said:


> Hey Zig, hope you are well!!  It's been a few days.  Just worried about you and curious.  Keep us posted.


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. =)


----------



## Guest9283

.....


----------



## Guest9283

*July 20th, Stage 2 Chemo's day 1.*

....


----------



## CrohnsHobo

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!!


----------



## Claire617

Mr. Ziggy said:


> but other than that smooth sailing!


YAY! This is brilliant news , the place doesn't actually sound too bad!


----------



## DustyKat

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.


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


----------



## Guest9283

*Wednesday, July 21st, Chemo stage 2, day 2.*

....


----------



## Guest9283

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!!


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.


----------



## Guest9283

Claire617 said:


> YAY! This is brilliant news , the place doesn't actually sound too bad!



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.


----------



## Guest9283

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


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.


----------



## Crohn's 35

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!


----------



## Sue-2009

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


----------



## Guest9283

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!


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:


----------



## Guest9283

...


----------



## Guest9283

*Thursday, July 22nd, Chemo stage 2, Day 3*

.....


----------



## phillycrohns

> 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%.


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


----------



## Dexky

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!!


----------



## DustyKat

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


----------



## acg101

@ 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


----------



## Poppysocks

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.


----------



## Guest9283

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!!


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.


----------



## Guest9283

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


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.


----------



## Guest9283

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


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.


----------



## Guest9283

....


----------



## Dexky

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.


Thanks Zig,  I can't tell you how much hope you've just given me.  God bless you my friend!!!


----------



## Hungry

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!


----------



## Poppysocks

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.


----------



## Guest9283

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!


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.


----------



## Guest9283

Poppysocks said:


> 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.


I am in Chicago away from my general computer - Here is a great place to start.

http://www.stemcell-immunotherapy.com/


----------



## Sue-2009

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


----------



## RachaelMercedes

Hi Zig, been keeping tabs on this post for a few weeks now. Thanks for all the info, its much appreciated! 

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!


----------



## Guest9283

*Fri - Mon*

....


----------



## Guest9283

*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!


----------



## DustyKat

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


----------



## Crohn's 35

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:


----------



## DustyKat

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


----------



## Guest9283

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


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!


----------



## Guest9283

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:


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.


----------



## ThanksP

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.


----------



## Dexky

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!!!


----------



## CrohnsHobo

I hope it went well yesterday!


----------



## Guest9283

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.


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.


----------



## Guest9283

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!!!


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.


----------



## Guest9283

*Tuesday, July 27th - Stem cell transplant day.*

....


----------



## Guest9283

CrohnsHobo said:


> I hope it went well yesterday!


Thanks A lot - I couldn't be more happy with how smoothly it went.


----------



## Guest9283

*Wednesday, July 28th*

....


----------



## Dexky

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.


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!!!


----------



## acg101

@ 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.


----------



## Hungry

Ziggy how many ops have you had in the past?


----------



## DustyKat

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


----------



## Sue-2009

*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:


----------



## ThanksP

Hope you are doing well with your new stem cells.  Hang in there for all of us!


----------



## Dexky

Hey hero, looking forward to your next update.  Hope all is well!!!


----------



## Dallies

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


----------



## britt_l_andy

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:


----------



## Rob.G

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.


----------



## Claire617

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


----------



## Rob.G

That Prof Chris Hawkey in Nottingham is a right Character ain't he 
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.


----------



## Hungry

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?


----------



## Guest9283

*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!


----------



## Guest9283

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.


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!


----------



## Guest9283

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


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!


----------



## Guest9283

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:


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


----------



## Dallies

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!


Thank you, that means a lot to me.  It's great to hear from you xxxxxx:ysmile:


----------



## Astra

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


----------



## Guest9283

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.


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?


----------



## Guest9283

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


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!!


----------



## Guest9283

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


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!  =)


----------



## Crohn's 35

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!!


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:


----------



## JUSTINtime.

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.


----------



## Entchen

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.


----------



## phillycrohns

> 5 more weeks and I should start feeling better (if I am in that 80%) just like the others did.


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


----------



## Guest9283

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:


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.


----------



## Guest9283

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.


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!


----------



## Guest9283

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.


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


----------



## Guest9283

phillycrohns said:


> 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


The 20% report that their crohns is not nearly as bad as it used to be. They are now also, all responding to medications and treatments which had previously stopped working for them - since they now have a brand new immune system. For me this Medication would be remicade. It helped for about 8-9 years and then I stopped responding to it. I talk to 2 people that are in that 20% and they are still happy with the fact that they are responding to medication now that are keeping their flares at bay.


----------



## DustyKat

Hi Zig, :bigwave:

So :ywow:, in my mind a positive outcome all round! Thank you so much Zig for keeping us posted on your outcomes and answering our questions, it is invaluable. I am in awe of you Zig, you are amazing! :awe: I hope the luck continues to flow your way..............................


:goodluck::goodluck::goodluck:


Thinking about you, 
Dusty


----------



## phillycrohns

Ziggy:

Thanks for letting me know what happens with the 20%.  Really, there is no bad outcome to this treatment.  Everyone seems to get better in some way.  But at the same time, I hope you are in the 80%!

Chris


----------



## Entchen

Ziggy, that's amazing that even people in the 20% report improvement. You're my hero for going through all this. I really, really hope you're in the 80%!


----------



## Hungry

Bad news for Stem Cell Treatment - http://www.nature.com/news/2010/100817/full/466909a.html
Hopefully the pro stem cell people will win!


----------



## Guest9283

DustyKat said:


> Hi Zig, :bigwave:
> 
> So :ywow:, in my mind a positive outcome all round! Thank you so much Zig for keeping us posted on your outcomes and answering our questions, it is invaluable. I am in awe of you Zig, you are amazing! :awe: I hope the luck continues to flow your way..............................
> 
> 
> :goodluck::goodluck::goodluck:
> 
> 
> Thinking about you,
> Dusty



You're very welcome! I can't wait till it goes mainstream for everyone else. =)


----------



## Guest9283

phillycrohns said:


> Ziggy:
> 
> Thanks for letting me know what happens with the 20%.  Really, there is no bad outcome to this treatment.  Everyone seems to get better in some way.  But at the same time, I hope you are in the 80%!
> 
> Chris


Yep! That's how I was looking at it when I decided to do the transplant - As long as you think can get through it, the possible outcomes are win, win. =)
I really hope I am in that 80% too! Thanks Philly.


----------



## Guest9283

Kelly said:


> Ziggy, that's amazing that even people in the 20% report improvement. You're my hero for going through all this. I really, really hope you're in the 80%!


Thanks Kelly! I couldn't believe it when the doctor was first explaining the general results and possible outcomes either. Have a good day! =)


----------



## Guest9283

....


----------



## Hungry

It's stem cell related. As I mentioned way earlier in the thread many people seem to be opposed to any form of stem cell use. So yes I think it's all related as if that research gets banned, it will undoubtedly have an effect on all other use of stem cell treatment.

I'm 100% pro stem cell treatment. Both times I've mentioned this you have been very defensive. I'm not attacking you or against stem cell treatment. I'm just stating facts.
Many people believe that use of stem cells for anything is messing with nature and are opposing it. Can you not see how this is related?


----------



## Guest9283

.....


----------



## Hungry

Mr. Ziggy said:


> I get defensive because I have put in a lot of effort, even on my bad days, to share with people who may find themselves in a prediciment like I was in - Where nothing else would work for them, they have exhausted all their options. To let them know there is hope. Then you go and post negative comments, and your "facts" that are so inaccurate, and misleading. Then you argue with me that you are right, when I've spent the last year researching and going through the actual transplant. This could possibly detour someone from learning more about this therapy if they didn't know better before reading your misinformed posts  -  after I have put so much effort into it.


I wasn't taking anything away from your efforts and appreciate your posts as it has also given me hope. Don't under estimate people's intelligence or will to get better, by saying what I posted would deter them from learning more. That is ridiculous. 



Mr. Ziggy said:


> 1 - The only reason some religious folks have been "against" stem cell transplants, is in the use of embryonic stem cells. I said this before to you. Maybe you don't understand what that is - That is stem cells from an embryo. Hence the religious crowd having problems with this, because in theory, you are having to destroy a life (the embryo) to help someone else out. THEY HAVE NOTHING AGAINST DOING STEM CELL TRANSPLANTS FROM YOUR OWN BLOOD STEM CELLS. There is no other ethical reasons to be against it, as it does not as you say "mess with nature".


I disagree with your statement. Many religions are again many forms of medicine and science, but that's another debate that I didn’t think either of us have time to get in to or would benefit from doing so. I'll agree to disagree.



Mr. Ziggy said:


> 2 - The problem with what that clinic is doing, is they are taking stem cells and  injecting it into ligaments and joints. That has never had a controlled study to be proven effective. They are skipping an entire step and process, that regulates the safety of these treatments, before  being  given to the public. I AGREE with the article - his practice should be taken down. It is irresponsible and dangerous! Sometimes regularity and conformity can be taken too far and restrict us from getting treatments on the market as soon as we would all like. However we need these governing rules in place to make the drug and treatment industry as safe for us as can possibly be. That doctor is simply not following the rules, and such acts can be dangerous, or lead other doctors to practice any forms of therapy they feel is best, regardless of FDA rules and regulations which would be simply unethical and very scary. With that in mind, I can guarantee, this will have no effect on stem cell transplants or bone marrow transplants what so ever!


Not sure if you read through the whole article, but the reason they bypassed the FDA (Food and Drug Administration) is because as the doctors stated, No drugs are involved, so it doesn't need to be approved by them. So for you to agree that his practise should be taken down and take away hope from those that need it seems a little hypocritical don't you think? If a doctor gave me the option to try an experimental treatment that has yet been proven, I would research the options and risks and make my decision. I would have thought you of all people would understand that.



Mr. Ziggy said:


> 3 - Nothing is stopping you from making another thread, maybe titled "general stem cell news and discussion" to clarify any more misunderstandings you might have about stem cells. You can also pm with any other questions you have on stem cells, and if I am able to answer them I will. But for this thread let's stick to the therapy in which it was intended to disscuss - stem cell TRANSPLANTS for CROHN'S which will not be influenced by anything other than the trial itself, and its results.


I only posted in here as I believed it to be on topic, and in no way putting anyone off research this treatment or anything else you may have read in to it. Apologies for any offense or distressed caused.



Mr. Ziggy said:


> Other exits from the article :
> " But the company did not apply for FDA approval and continued to offer the treatment. Now the agency (FDA) says that the company is not following good manufacturing practice"
> 
> Exactly, and is the sole reason they want to shut him down as they should.
> 
> " The FDA's demand for scientific evidence from clinical trials is a valid position"
> 
> Dr. Burt is running FDA approved trials with more than promising outcomes, which is why this has NOTHING to do with transplants nor will it's outcome have any effect on the future of stem cell transplant whatsoever. I hope that "clinic" does get shut down, as there has to be some standards to be held upon when dealing with stem cells, what ever the procedure may be.


Part of the article you must of missed or scanned over before your reply.



> In July 2008, the FDA told Regenerative Sciences that its treatments are drugs according to the Federal Food, Drug and Cosmetic Act, and biological products under the Public Health Service Act. But the company did not apply for FDA approval and continued to offer the treatment. Now the agency says that the company is not following good manufacturing practice, and that the treatment's safety and efficacy is unproven.
> 
> But *Christopher Centeno, Regenerative Sciences' medical director, argues that as the treatment uses a patient's own stem cells*, it is a medical procedure akin to in vitro fertilization, and therefore none of the FDA's business. He adds that his treatment has a much better safety record than conventional surgery and that animal and imaging studies have proved it effective.
> 
> The FDA's demand for scientific evidence from clinical trials "is a valid position. But it is not the only position," Centeno told Nature. He says that it is sufficient to follow the guidelines of the International Cellular Medicine Society (ICMS), based in Salem, Oregon, an association of 1,100 physicians and patients that he co-founded and of which he is medical director.
> 
> *Centeno and his supporters say that the FDA's request for an injunction is another blow for stem-cell clinics in their David-and-Goliath struggle with an industry-led alliance that wants to put a stranglehold on stem-cell therapies and restrict individuals' use of their own cells.* In an open letter on 30 July, ICMS executive director David Audley accused the International Society for Stem Cell Research (ISSCR), based in Deerfield, Illinois, and including some 3,500 stem-cell researchers, of setting out to close their clinics. Motivated by the interests of a pharmaceutical industry unlikely to profit from the treatments, Audley says, the society wants to "change the laws in all civilized countries to outlaw these therapies". When questioned by Nature, however, Audley admitted he had no hard evidence for these assertions.


http://www.nature.com/news/2010/100817/full/466909a.html

I mentioned before, FDA is trying to class "Regenerative Sciences" as drugs. Which you rightly pointed out are” YOUR OWN BLOOD STEM CELLS" and as stated in the quote above "treatment uses a patient's own stem cells". So can you see where I'm coming from now?

Anyway I didn't post here to make enemies, insult anyone or put anyone off stem cell treatment, so I will leave it at that. If I caused you or anyone else in here offense then please accept my apologies!


----------



## Sue-2009

Thanks Zig man!!!  I appreciate your posts.  I was in the Chicago area and thought about you!  I am so happy your doing well.  I for one am happy for your posts!  Can't wait to hear your improvement each day!  Seriously, let me know when you are in Michigan....Sue


----------



## Crohn's 35

Thanks for bringing this up Sue!  Mr Ziggy, please don't abandon us because of one person's opinion that just gets us stressed out. We need to be reminded that he is doing this as a request from us!  This is valued information!  If anyone wants to express their opinions that is fine everyone is entitled.  However, these threads continue to stress people out and we all know what stress does to our bodies!! Mr Ziggy is doing this for us so lets appreciate his efforts!  Please give us an update Mr Ziggy!


----------



## SavvyQc

I've just read through all 8 pages and I am in awe of your bravery to a) go through this ad b) to share it all.

Kudos to you for trying something new. Whenever I have brought up Stem cells to my GI he just rolls his eyes. There is defiantly fear of new things and new ways. 

I look forward to hearing more.  Big Cograts on your new mucous lining! May you have many happy meals in your upcoming blog posts.


----------



## DustyKat

*Missing You*

Ziggy, Ziggy, Ziggy where are you??????????????

Are you OK? 

Are you :well:

Thinking about you, 
Dusty


----------



## acg101

Ziggy - I hope all is well and you are making progress


----------



## Sue-2009

Where o where could the Zig Man be...Oh Where o where could he be?!!! S


----------



## Guest9283

.....


----------



## Guest9283

SavvyQc said:


> I've just read through all 8 pages and I am in awe of your bravery to a) go through this ad b) to share it all.
> 
> Kudos to you for trying something new. Whenever I have brought up Stem cells to my GI he just rolls his eyes. There is defiantly fear of new things and new ways.
> 
> I look forward to hearing more.  Big Cograts on your new mucous lining! May you have many happy meals in your upcoming blog posts.


Everyone read this? Ask your GI about SCT. When he comes back with negative, or short blunt comments - Put him on the spot, ask him a few questions about the treatment! We need to encourage doctors (GI's) to look into this treatment more so than just reading and understanding a few paragraphs in the same articles that we read!! Not to say that this treatment is for everyone, but its definitely worth having in your pocket of arsanal against this disease if need be oneday. Educate your doctors, not just for your own well being and future, but for all of us. Thank you Savvy, and know that I am now enjoying my meals more than ever!!  

Z.


----------



## acg101

Hey Z.
Its so great hearing from you and most imortantly learning that you are doing so great with the treatment. I am thinking of you every day and praying that all goes well for you.
Dont mind the people that will always find something with everything they do... I would not spend any energy on them. We love you, proud of you and praying for you!
big hug
acg


----------



## Crohn's 35

Mr Ziggy, I want to thank you so much for coming back.  Please dont let others deter you from being here, one bad apple shouldn't spoil it for the rest of us, and I will do what I can to influence that posts like that should be removed.

I for one have had Crohn's symptoms 30 years, and heading for a 3rd resection.  I for one would like to see a cure in my lifetime!  Some people state their opinions and get carried away, and you have to be the better person to over look that.  You are an intelligent person who is doing US a great favour.  Even if you decide not to come back, pm me where I can follow you.  Thanks heaps!!!


----------



## Astra

Yes Ziggy Stardust!

I fully agree with Jetta, keep the blog going, please don't tar us all with the same brush, Hungry didn't get into an argument, and he did apologise for any offence.
This is so exciting! You've grown a new mucosa and eating well? This is great news, for all of us! Now all we need is awareness and for us all to mention this to our gastros, whether they listen or don't, we need to raise awareness of the possibility, if not in our lifetime, then for our children, their children and so on.
Please keep blogging, don't leave us!
Joan xxx


----------



## Marsman

Ziggy

I agree with the folks posting above.  Please continue your updates as it is most enlightening and inspiring. 

Andre


----------



## DustyKat

WOOHOO! YAY ZIG! IT'S FABULOUS TO HEAR FROM YOU!!!

Wow, how great to read that everything continues to go well and according to plan. How good is that! 

I'm also happy to hear that your friend is doing well and that others will be following you down this path. How lucky are we that you and other brave, selfless people have pioneered this treatment for the rest of us. What you have all done and achieved is priceless and I cannot do it justice by trying to put it into words. 

Thank you again Zig for doing this and I remain forever in :awe:

Always in my thoughts, 
Dusty


----------



## Dexky

Good for you Zig!!  Please don't stop updating!!  Pleeeeeaaaaassssseeeee!!!!!  You have given me so much hope for EJ's future!!!  You cannot imagine how much I want to hear from you!!!!!


----------



## gypsigirl28

wow, I just read this entire thread and I have to say i am amazed but you ziggy. What an experience for you and to blog it all so everyone can learn about the stem cell transplant.  You are amazing indeed!!!!!!!!!!!  i just could not stop reading the updates.  I am glad that everything went well for you and that the transplant is working for you.  With all your details and the fact that you seem to be doing so good will help many others that are thinking about thee transplant and holds alot of ground for the future... Please do not stop blogging no matter what. People need to hear what you have to say regarding this and we all want to know how you are doing..
take care


----------



## Poppysocks

I hope you continue to update this thread frequently ziggy. It seems as though you're getting to the point where you are finally getting better and we all want to keep updated on how well you are doing.


----------



## Dallies

Thinking about you Zig, Meg is doing really well, thank you so much for your words of encouragement on my post re Meggie's surgery.  You are wonderful!   Please keep us posted.  Much love xx


----------



## TMos

Ziggy, your optimism and positive attitude are contagious and this thread is an absolute wealth of knowledge.  Please keep us up to date as you are a hope generating machine!!!!


----------



## Poppysocks

http://www.ncbi.nlm.nih.gov/pubmed/15765390

Here's a study that was done on Autologous Hematopoietic Stem Cell transplantation for Crohns patients. I can't read the whole article but it says 11/12 went into complete remission.

I really don't think this is a cure*. Because you cannot just reprogram our immune system. BUT, I do think this is something that could possibly help people attain remission for multiple years, and depending on the lifestyle you live, could keep you in remission for longer. Which would be awesome, I've gotten to the point where I'd rather live a short healthy life than a long sickly one.

I'd love to get involved in a trial but I have no idea where to start.

on a side note - COME BACK ZIGGY


----------



## Crohn's 35

I think we lost him...is anyone following him anywhere else or getting pm's from him?  I would surely love to know!  I would so appreciate it! Please come back!!


----------



## acg101

yeah, we miss ziggy. I hope he is doing ok.


----------



## Guest9283

.....


----------



## Guest9283

Poppysocks said:


> I'd love to get involved in a trial but I have no idea where to start.


You can start here 312-503-1435. Ask for Paula. Tell Paula Mr. Ziggy said to call and inquire about the transplant, and you are thinking about joining the trial. From there, she will go over it with you. If you decide you want to do it, she will try to get insurance approval for you. That's it - You then just wait for a responce =)


----------



## Guest9283

Dallies said:


> Thinking about you Zig, Meg is doing really well, thank you so much for your words of encouragement on my post re Meggie's surgery.  You are wonderful!   Please keep us posted.  Much love xx


SOOO glad to hear she is doing well! I was praying for her. =)


----------



## Guest9283

A big thanks to everyone else for the nice encouraging words, and nice comments. I appreciate them all very much - I didn't know I was missed so much! =)

I will keep you all updated on how things go - I forgot to mention, my hair on my head and go-T are coming back finally! It has been 5 weeks since discharge, just incase anyone was wondering how long it takes your hair to start growing back.

Thanks again everyone - You all make this forum a wonderful place to be.


----------



## Guest9283

Dexky said:


> Good for you Zig!!  Please don't stop updating!!  Pleeeeeaaaaassssseeeee!!!!!  You have given me so much hope for EJ's future!!!  You cannot imagine how much I want to hear from you!!!!!


How is EJ??


----------



## Poppysocks

Ziggy, thanks for responding. I'm gonna share a few of the emails I have received from a few of the doctors. I've looked into a few of the clinical trials going on at the website clinicaltrials.gov and I emailed all of the study coordinators about them.

The trial going on at Duke seems to be something I may not be qualified for. I have not been on about half those drugs. I've been on and failed prednisone, imuran, pentasa, asacol, remicade, relapsed after surgery and I'm about to try Humira. Apparantly they have to open up your chest!? Here's the email I received from Dr. Paul at Duke just to give you guys who are interested an idea of what they are doing and how crazy scary this procedure  is. 



> Hello Chris
> 
> I am very sorry to hear that you have such a difficult case of IBD.
> 
> We consider autologous stem cell transplantation therapy for those who have failed all other reasonable standard medical and/or surgical therapies. This includes agents such as prednisone, 6-mercaptopurine, azathioprine, methotrexate, Remicade, Humira, Tysabri, GM-CSF, Prograf, and thalidomide.
> 
> There is evidence that subjects who receive an autologous transplant (cells collected from the patient) have seen an improvement in their overall quality of life and remission from symptoms. However, there are some who may recur after a few years.
> 
> This protocol requires that a patient receive chemotherapy, the patient will have a central venous catheter  surgically placed into the chest.   During the transplant, the central line will allow for the medical team to draw blood and give medications, transfusions, and IV nutrition without having to stick the patient with a needle.   Prior to transplant, the central venous line will be used to collect the stem cells that will be used for the transplant. High dose chemotherapy drug, called Cyclophosphamide (Cytoxan) will be given in order to collect these stem cells by a procedure called apheresis.
> 
> After the stem cells are collected they will be frozen until the day of transplant.   To prepare for the transplant, the patient will be conditioned high dose chemotherapy  in order to eradicate the self-reactive/faulty immune system. This high dose chemo, can cause organ toxicities.  There will be infertility issues and these should be addressed prior to transplant.  There may be also strain on heart and other organs although these are all expected to be reversible and temporary. The patients need to spend here at least 2-3 months after transplant. Collecting stem cells for transplant  means at least  3 weeks stay in Durham followed by minimum of 2 months rest between stem cell collection and the transplant. This rest could potentially take place in your home state/town.
> 
> Since my background is in hematology-oncology and transplant we work very closely with two physicians in Pediatric GI here at Duke.  Dr. Ulshen is  the Chief of Peds GI, and also Dr. Nancy McGreal works with our patients.   We would want you to be evaluated by one of these physicians to determine if he would meet the eligibility criteria.
> 
> It has to be determined  the appropriate stage of your disease. This means eligible patients should have at least moderately severe  Crohn's disease activity at the time of enrollment to justify the risks of transplant , however, not too sick in order to tolerate transplant chemotherapy and the effects of low immune system for a while. At the time that you would be evaluated by GI here at DUKE, I  would meet you to discuss the risks and benefits of transplant.


This is an email I received from Paula at Northwestern. Apparantly the central line goes straight into your jugular?



> My name is Paula and I am the nurse coordinator for Stem Cell Transplantation. I received your email and wanted to touch base with you-
> Thank you for your interest in stem cell transplantation for the treatment of Crohn's disease. This treatment was designed to provide an effective therapy for persons who do not achieve lasting control of their disease with exposure to standard therapies including Remicade, Steroids, Immuran and Pentasa, etc.  The eligibility criteria for this protocol require, in most cases, failure of therapy with prednisone, anti-TNF alpha inhibitor, azathioprine, 5 - ASA products and metronidazole. Therefore, if you have been exposed to these agents and relapsed, you may well be a candidate for this FDA approved study.
> 
> If you feel that your Crohn's Disease is of this severity, please forward a cover letter in which you summarize your own history.  In addition, separately, or with a cover letter, please send your pertinent medical records, with an emphasis on prior treatments; colonoscopy and small bowel follow through reports and your current lab values.  Unfortunately, there is no patient funding for housing, airfare or medical bills. You will need to check with your insurance to see if Northwestern is in network.  Please send this information to my attention at the below address.
> 
> Please see attached eligibility criteria for our crohn's protocol, articles, and roadmap for transplant, to help you better understand our program.
> 
> Please feel free to contact me with further questions.


----------



## Guest9283

....


----------



## Dexky

Mr. Ziggy said:


> How is EJ??


Hey Zig,  EJ has been amazingly well lately!!  Thanks for asking!!  He has had an amazing summer and seems to be continuously improving.

I'm very glad you updated and I'm thrilled to know that all is going according to plan for you.  I like you and your transplant partners' idea about avoiding triggers.  You've been through so much, I'm sure you have the discipline and the will to maintain that course.  Best of luck to you Zig!!!  Keep us up to date!!!


----------



## seaofdreams

Wow, I've just spent the last hour or so reading every single word of this thread and I am in completely and utter awe. It's also been really hard to keep myself from getting misty-eyed while reading this at work lol.
Mr. Ziggy, you're so incredibly brave and an amazing inspiration. Your positivity and enthusiasm is humbling. I'm so glad to hear that you've gained so much from this experience and even more importantly, what you've done not only benefits you but may benefit Crohn's sufferers and revolutionize medicine completely for centuries to come. This research is so exciting and gives me a lot of hope for my future and for the future of other sufferers. Best of luck with everything, I'll be looking forward to your next update


----------



## DustyKat

Hey Zig,

Thanks for the update! It's fab to hear that you remain on track in your quest, YAY!!! How good is that!!!

I wish you all the best in your recovery and remission and may it be be a veeeeerrrryyyyyy long one. 

:goodluck::goodluck::goodluck:

Always thinking about you, 
Dusty


----------



## Crohn's 35

Hey Ziggy, I am so happy you are back and support of me too!  I am sending your whole blog to my hubby cause he wants to read it (he is a morning person, I am not lol).  When we have discussed this I will let you know what and if it this is for me, IF I can get my new gi (still awaiting appt) could be of help.  Keep us updated and let us know how you feel! :ysmile:


----------



## Guest9283

Dexky said:


> Hey Zig,  EJ has been amazingly well lately!!  Thanks for asking!!  He has had an amazing summer and seems to be continuously improving.
> 
> I'm very glad you updated and I'm thrilled to know that all is going according to plan for you.  I like you and your transplant partners' idea about avoiding triggers.  You've been through so much, I'm sure you have the discipline and the will to maintain that course.  Best of luck to you Zig!!!  Keep us up to date!!!


That's just great to hear! Im hope he may have many many more great summers ahead of him too Dex. 

Thanks Dexy. I think everyone else just kinda let loose after their transplants before mine it sounds. Which is fine, they have had great results, but im here to give 100%. And if I stay crohn's free longer, then maybe I've paved anyother way? No harm in trying


----------



## Guest9283

seaofdreams said:


> Wow, I've just spent the last hour or so reading every single word of this thread and I am in completely and utter awe. It's also been really hard to keep myself from getting misty-eyed while reading this at work lol.
> Mr. Ziggy, you're so incredibly brave and an amazing inspiration. Your positivity and enthusiasm is humbling. I'm so glad to hear that you've gained so much from this experience and even more importantly, what you've done not only benefits you but may benefit Crohn's sufferers and revolutionize medicine completely for centuries to come. This research is so exciting and gives me a lot of hope for my future and for the future of other sufferers. Best of luck with everything, I'll be looking forward to your next update


Aww, the last think I wanted to do was make anyone teary eyed at work, lol. Sowwy 

Thanks for your kind words! The could only hope some of my positive attitude I have found may rub off on some others in my life and on this forum. It really has been the best medicine for all my obsticles I've had to face in life. Have a good day!


----------



## Guest9283

DustyKat said:


> Hey Zig,
> 
> Thanks for the update! It's fab to hear that you remain on track in your quest, YAY!!! How good is that!!!
> 
> I wish you all the best in your recovery and remission and may it be be a veeeeerrrryyyyyy long one.
> 
> :goodluck::goodluck::goodluck:
> 
> Always thinking about you,
> Dusty


Thanks DustyKat! I must say once again, I am so impressed with how much time you dedicate to supporting everyone in this forum!  It is definitely something to be admired of you. You have a big heart.


----------



## Guest9283

....


----------



## Crohn's 35

Thanks Zig.  Dropped down to 10mg of pred, and holding my own.  Not to worry, I always research and discuss things with my husband, he is  my best friend and has my health issues for the good.  I am not underweight, and I am not narrowed at the moment, just ulcers that need to get under control. I am not in dire straits and just looking at possibilities for the less invasive treatment for me to go through. I am happy you have suggested all this for me, and I now have to decide and talk to a surgeon and new Gi when the appts come up.  I know you are not pushing and I have been searching the best way, who knows, and I thank you and I think you are amazing.


----------



## Sue-2009

Oh my....Zig...You seem to be doing well.  An inspiration to al of us...So, are you working? Living life?  What are you doing when you are not at the drs?  S


----------



## Guest9283

Pen said:


> Thanks Zig.  Dropped down to 10mg of pred, and holding my own.  Not to worry, I always research and discuss things with my husband, he is  my best friend and has my health issues for the good.  I am not underweight, and I am not narrowed at the moment, just ulcers that need to get under control. I am not in dire straits and just looking at possibilities for the less invasive treatment for me to go through. I am happy you have suggested all this for me, and I now have to decide and talk to a surgeon and new Gi when the appts come up.  I know you are not pushing and I have been searching the best way, who knows, and I thank you and I think you are amazing.


Well I'm sure things turn out for the best. I know some way or another you will find a way to get over this hump in the road. Keep me posted.

Z.


----------



## Guest9283

....


----------



## Guest9283

*First post transplant GI appointment!*

Today I had my first appointment with my GI, since the transplant. Last time he saw me, we were both in a pickle, because we had exhausted all options, and didn't know how to stop my malabsorption (in hospital for 3 weeks). I could not even absorb water, and my kidneys were failing. It was a very nice visit, and nice to see everyone. When I first walked up to the desk, the receptionist had to give me a double take, as I am sure I look a bit different with little to no hair! lol. When my doctor came in, he looked at me, smiled and said "your looking good!". I bet it was a relief for him, as I know he was nervous about me deciding to do this transplant. He asked me what medication I was on, with my file open to a blank page, and a pen ready to write in his hand. I told him I was on nothing. At that point he looked up at me and said "not on anything for your crohn's"? Nope, I replied. He then asked me what my symptoms were. Sitting at the end of the bed, I replied "I don't have any...".  - "No pains, fistulas, diarrhea, fever" he asked? Nope. It was at that point where there was a very slight moment of silence..... From then on he became very interested in my protocol I underwent. He asked me to start from the beginning of my transplant, and as I told him everything, he wrote it all down in his personal notes. Asked more questions, and then proceeded to tell me how other transplants had turned out in other countries and places! Yes! That's exactly what I wanted! I am very lucky to have a GI that is as good as he as, and as sincere, and genuinly caring of his patients. He had obviously done some looking into the ASCT's after I was admitted in Chicago, and that is exactly what I wanted!  I've known this doctor for many,  many years, and in my opinion he is very good. It is up to us though, to stay on the ball, and take matters into our own hands a bit, and always be looking into new research, and inform our doctors, so they can better the future of crohn's treatment. It is after all, in their hands to do so. You know, I had a choice this morning... To stay with my old GI, keep the appointment, or find a new one, for my new beginning. However I thought to myself, if I really want to make an impact here - NO doctor, is going to understand, and appreciate what this stem cell transplant has done for me, like the doctor who had guided me for years, and ended up at a dead end.  He told me again today, just like I have heard it in the past from him "You know ""ziggy"", I really didn't know what else to do with you before the transplant". He asked me how my stools where. I told him I don't think they could be any better, as solid as I've ever seen, and I am maintaining my weight. He then proceeded to say "that means that your ileum & bowel must be healing, that is the only way for this to occur"... Today is a day that I don't think my doc, or I will ever forget. There is only one more day that will hopefully have the same effect on us - that is the day I get my first post transplant colonoscopy results!

I feel truly blessed & humbled.

-Ziggy


----------



## seaofdreams

Thanks for another update. I'm so excited to hear that everything is going well. I too, am lucky to have found a GI who genuinely cares about his patients. Mine regularly calls to stay updated on my progress and actively works to make things as easy for me as possible. I'm really looking forward to the results of your first post-transplant colonoscopy. Stay well


----------



## DustyKat

Wow Zig, how good is that! It's so brilliant that both of you could sit down and talk freely about it. Thanks Zig.

:mademyday:

Dusty.


----------



## Poppysocks

Ziggy,

What is your current height and weight at if you don't mind me asking? Are you at a healthy weight or are you underweight? I know you said you were down to 133 lbs at one point jw if you've been able to put some lbs back on.


----------



## Amenace

This is amazing.  Ziggy, am at a loss for words. This is great (for you definitely) but also for people with Crohn's.

Wow, i dont post much, i lurk alot, but i am truly inspired by your journey.

Lola
xx


----------



## Dexky

Mr. Ziggy said:


> I feel truly blessed & humbled.
> 
> -Ziggy


It is we who are blessed and humbled by your  bravery and the time you have put in to keeping all of us informed on your journey.  Thanks as always Zig!!!


----------



## Crohn's 35

Glad you are doing so very well!!!! Keeping my fingers crossed for ya!!!


----------



## Guest9283

seaofdreams said:


> Thanks for another update. I'm so excited to hear that everything is going well. I too, am lucky to have found a GI who genuinely cares about his patients. Mine regularly calls to stay updated on my progress and actively works to make things as easy for me as possible. I'm really looking forward to the results of your first post-transplant colonoscopy. Stay well


Thanks for  staying tuned! I'm glad to hear you have found a genuine GI that cares for his patients. It can make the world of difference.


----------



## Guest9283

DustyKat said:


> Wow Zig, how good is that! It's so brilliant that both of you could sit down and talk freely about it. Thanks Zig.
> 
> :mademyday:
> 
> Dusty.


I know! Hopefully him seeing it work for me, might encourage him to reccommend it to someone else in the future, if conventional treatment stops working for them, like it did me.


----------



## Guest9283

.....


----------



## Guest9283

Amenace said:


> This is amazing.  Ziggy, am at a loss for words. This is great (for you definitely) but also for people with Crohn's.
> 
> Wow, i dont post much, i lurk alot, but i am truly inspired by your journey.
> 
> Lola
> xx


Well thanks for coming out and posting on my thread, I must of done a good job. lol 

 I think I might have the opposite problem - I post too much sometimes! Lol

Thanks, I too was inspired, when I started to get all these responces to my blog.


----------



## Guest9283

.....


----------



## Guest9283

Pen said:


> Glad you are doing so very well!!!! Keeping my fingers crossed for ya!!!


Keep em crossed  for me, almost time to do the colonoscopy! I can't stop thinking about it, everyday that goes by! ...


----------



## gringo43

Hi Ziggy

You don't ever post too much...you've provided great info...even during what had to have been a hard fought process...you've given us links to the research,your experience, ups and downs, and never once said your it was your way or the highway...you've done a stand up job of giving....not many can say that!...thanks again and may your progress just keep on keepin' on!

Jerry


----------



## beth

Good luck with the scope! Actually, do you need luck! ;-) Sounds like you're doing really well.


----------



## Sue-2009

Zig...Send us pictures of your colonoscopy  --Just kidding...don't you dare!  Any how, I am glad life is treating you well...I am a little envious...and scared for me.  I can tell my disease is still active.  I notice that if I skip my cortosone enema, I really know that i have an intestine...Ewww...Anyhow, I am glad life is good...Let me know if you come to the states...It would be good to hear more about your adventures as one of the first stem guys....Keep posting!  Sue


----------



## acg101

Hey Zig - It is so great as I was following you from the start and praying, hoping you will do well with the transplant.
I hope that you now enjoy life to the fullest, and continue to keep us in the loop as we are yours forever
big hug


----------



## Entchen

Ziggy, I feel so optimistic every time I read your updates!


----------



## Dallies

Thinking of you Zig, xxxxxxxxxxxxxxx


----------



## misterquin

I read this entire thread and i have to say you're a brave man. I'm thankful for your contributing to the finding of a cure for this disease. Hope all is still going well.


----------



## adrian mcdonnell

Hi Ziggy.
  Just wanted to say thank you so much for giving all of us an insight to this treatment. It has really helped me decide which course of action to take for my situation and as a result of that i will be starting this treatment at Nottingham Medical University in 2 weeks. I really hope i can be a strong as you have been through this treatment with the same end results. Please let me know how you are and if things are still positive.

Thank you
adrian.


----------



## Sue-2009

Adrian!!  Wow!  Another strong inspiration.  Good luck..I'll follow your posts too!    !

Sue


----------



## BloodDrama

Just finished reading the story, hope your colonoscopy will show good results once done!
This stem cell transplant seems like the future cure, makes me feel excited


----------



## Guest9283

gringo43 said:


> Hi Ziggy
> 
> You don't ever post too much...you've provided great info...even during what had to have been a hard fought process...you've given us links to the research,your experience, ups and downs, and never once said your it was your way or the highway...you've done a stand up job of giving....not many can say that!...thanks again and may your progress just keep on keepin' on!
> 
> Jerry


Thanks Jerry, I appreciate your kind words. The act of giving is in return an act of giving to one self, as I've enjoyed being able to help others, it makes me feel good. Thanks again!


----------



## Guest9283

beth said:


> Good luck with the scope! Actually, do you need luck! ;-) Sounds like you're doing really well.


Lol, thanks, I hope it goes well...


----------



## Guest9283

....


----------



## Guest9283

acg101 said:


> Hey Zig - It is so great as I was following you from the start and praying, hoping you will do well with the transplant.
> I hope that you now enjoy life to the fullest, and continue to keep us in the loop as we are yours forever
> big hug


Oh and am I glad I've had people like you to share this with from the very start. It is as amazing to me as it is to most of you reading this blog! Thanks so much Dan, I can't  tell you how much I appreciate those prayers that you sent!


----------



## Guest9283

Kelly said:


> Ziggy, I feel so optimistic every time I read your updates!


Thanks Kelly!


----------



## Guest9283

Dallies said:


> Thinking of you Zig, xxxxxxxxxxxxxxx


Thanks Dallies, I hope Meg continues to feel better!


----------



## Guest9283

misterquin said:


> I read this entire thread and i have to say you're a brave man. I'm thankful for your contributing to the finding of a cure for this disease. Hope all is still going well.


Thanks Misterquin. All continues to go well, knock on wood!


----------



## Guest9283

....


----------



## Guest9283

BloodDrama said:


> Just finished reading the story, hope your colonoscopy will show good results once done!
> This stem cell transplant seems like the future cure, makes me feel excited


Thanks, I hope I can bring you all the good news when I have it done! ++++
I feel all so excited too, for all of you, as I know now, that I am 100% believer in this treatment!


----------



## BloodDrama

Mr. Ziggy said:


> Thanks, I hope I can bring you all the good news when I have it done! ++++
> I feel all so excited too, for all of you, as I know now, that I am 100% believer in this treatment!


After thinking a bit, i find one problem in this treatment, if you dont get 100% neutropenic it means there are still cells who "Crohn you", so wont they make the new cells do the same over time?


----------



## Guest9283

....


----------



## Dexky

Thanks for the update Zig!!


----------



## Poppysocks

don't let it die!


----------



## Guest9283

....


----------



## Guest9283

Dexky said:


> Thanks for the update Zig!!


No problem bud!


----------



## Sue-2009

Its cold in Mi today...Texas sounds nice...Sunshine, warm....Mmmm  Sue


----------



## Guest9283

...


----------



## Rob.G

I'm glad it's all going so well for you Ziggy.
Although I initially had to pull out of the Stem Cell Treatment myself due to having my emergency Ileostomy, my Crohns has now come back in my Small Intestines and it now looks like I will be going to Nottingham for the treatment after all!


----------



## Dras

Please post pics when you get them! You are such an admirable person. Thanx for sharing!


----------



## Guest9283

Rob.G said:


> I'm glad it's all going so well for you Ziggy.
> Although I initially had to pull out of the Stem Cell Treatment myself due to having my emergency Ileostomy, my Crohns has now come back in my Small Intestines and it now looks like I will be going to Nottingham for the treatment after all!


Well good luck to you Rob. It's not the easiest treatment, but in my experiance and opinion, it's has the best payoff, and to me well worth doing doing it twice if I had too. Keep me posted and feel free to shoot me any questions or anything.


----------



## Guest9283

Dras said:


> Please post pics when you get them! You are such an admirable person. Thanx for sharing!


No problem, you're all welcome. I might just send them to the few that request to see them, or if enough people are interested I will post them (if they are as good as I hope).


----------



## DustyKat

Hey Zig, :bigwave:

I hope everything continues to go well for you. Do you know the dates when you have to go back for your scope and check up?

Keeping my fingers and toes crossed that everything is NORMAL!!!

:goodluck::goodluck::goodluck:

Thinking about you, :hug:
Dusty


----------



## Poppysocks

Just wondering how our boy is doing. I have a meeting set up with doctor burt in the middle of december if these meds do not work for me.


----------



## Guest9283

DustyKat said:


> Hey Zig, :bigwave:
> 
> I hope everything continues to go well for you. Do you know the dates when you have to go back for your scope and check up?
> 
> Keeping my fingers and toes crossed that everything is NORMAL!!!
> 
> :goodluck::goodluck::goodluck:
> 
> Thinking about you, :hug:
> Dusty


Thanks Dusty! I actually leave for Chicago this Wednesday!

The dates were pushed back a week due to scheduling. Just been trying to occupy my time and mind lately so I don't continiously think about it. I will be in Chicago for a week. I am not too sure if I will be able to get on the forums from there this time, but I'll certainly post when I get back home.


----------



## Guest9283

.....


----------



## DustyKat

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


----------



## Zoodles

Your thread is actually how I found this forum.  Thanks so much for sharing your journey.


----------



## Dexky

Hey Zig, thanks for the continued updates!!  I'm looking forward to good news from your upcoming check-up!!  Have a safe trip!!


----------



## Stacyface

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:


----------



## Dras

Dink aan jou Zig!!! Lol, hope you get that.


----------



## winemaker

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!


----------



## mollysmom

Hope the scope proved it worked and no inflammation - cannot wait to hear the good news!!! praying it's all good!


----------



## Guest9283

*October 27th Wednesday.*

.....


----------



## Guest9283

*Oct 28th, Thursday*

....


----------



## Guest9283

*October 29th, Friday*

....


----------



## Dexky

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!!!


----------



## mollysmom

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!


----------



## Stacyface

*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:


----------



## Walt

*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


----------



## Dras

mollysmom said:


> I am in tears...happy tears...you did it! ~Thank you... CONGRATULATIONS!!!! YOU WON!



Ditto! I'm so happy for you:congratualtions::banana::luigi::beerchug: :headbang: :grr1d::runaway:
:mademyday:


----------



## ThanksP

You give me such hope.  Thank you!


----------



## Dallies

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


----------



## DustyKat

: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.


----------



## Amenace

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.


----------



## crohnicaly stinky

WOOOT!!!! WTG Zig!!  Congratulations and thanks for sharing!


----------



## acg101

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 !


----------



## beth

Kewl Ziggy!


----------



## winemaker

You're a champion mate!


----------



## Sue-2009

*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


----------



## Nica

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


----------



## Manzyb

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!!!!!!!


----------



## crankypants

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.


----------



## björn

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.


----------



## douglaset

*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.


----------



## Guest9283

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.


----------



## DMS

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.


----------



## Guest9283

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.


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.


----------



## Guest9283

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.


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.


----------



## douglaset

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.


----------



## DMS

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.


----------



## Dexky

Good to hear from you Zig!!  Glad all is still going well!!


----------



## crazycanuck

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!


----------



## crazycanuck

For ziggy one question if you dont mind what insurance company was it that covered the treatment and was it 100%?


----------



## Welsh-bird

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


----------



## Guest9283

Dexky said:


> Good to hear from you Zig!!  Glad all is still going well!!


Thanks Dexky! I wake up every morning feeling so alive now, I don't know how to expell all this new energy! lol

Hope all is well with EJ still?


----------



## Guest9283

crazycanuck said:


> For ziggy one question if you dont mind what insurance company was it that covered the treatment and was it 100%?


I think I mentioned it before in here, but I have Aetna insurance. 100% covered. I'll never switch. Great company.


----------



## Guest9283

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


Thanks! I am so glad it worked out, not just for me, but for everyone. =)


----------



## douglaset

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.


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.


----------



## Guest9283

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.


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.


----------



## Brian'sMom

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!


----------



## Stacyface

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.


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!


----------



## douglaset

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


----------



## Grumbly-Guts

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


----------



## Guest9283

....


----------



## Stacyface

*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:


----------



## Sue-2009

*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?


----------



## Stacyface

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?


Ziggy had the autologuous


----------



## Sue-2009

Thx!


----------



## pav89

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 )


----------



## effdee

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.


----------



## pav89

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.



Damn


----------



## Grumbly-Guts

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?


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


----------



## Grumbly-Guts

Mr. Ziggy,
Thank you so much again for your help and support, you have no idea the difference you've made!

GG


----------



## Guest9283

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 )




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.


----------



## Sue-2009

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.


----------



## Sue-2009

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


----------



## pav89

Mr. Ziggy said:


> 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.


Thanks very much, i'd really appreciate that


----------



## Guest9283

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


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.


----------



## Guest9283

pav89 said:


> Thanks very much, i'd really appreciate that


Alright bud, I am just waiting for Burt to call me back on your question. Standby. lol


----------



## Sue-2009

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!!!


----------



## Guest9283

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!!!


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.


----------



## Grumbly-Guts

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.


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


----------



## douglaset

*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.


----------



## Guest9283

...


----------



## Sue-2009

Thank you guys!    Sue


----------



## douglaset

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


----------



## acg101

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.


----------



## Shake-N-Jake

@ 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!


----------



## douglaset

*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.


----------



## Brian'sMom

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.


----------



## Stacyface

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!


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

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.


----------



## Guest9283

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.


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.


----------



## Guest9283

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.


----------



## effdee

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.


----------



## Stacyface

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.


Your welcome! 

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


----------



## douglaset

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


----------



## Guest9283

Stacyface said:


> Your welcome!
> 
> p.s.  Still haven't decided...auto or allo?..ugh...conference call with Duke University doc tomorrow am.


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...


----------



## Guest9283

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.


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.


----------



## Iya

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


So glad to read your story. It gives me hope!


----------



## Brian'sMom

stacyface,
Are you considering stem cell transplant for RJ?  Why is it harder for the younger patients do you know?


----------



## Guest9283

Brian'sMom said:


> stacyface,
> Are you considering stem cell transplant for RJ?  Why is it harder for the younger patients do you know?


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.


----------



## Guest9283

Iya said:


> So glad to read your story. It gives me hope!


Thanks Iya. I feel real blessed that it worked.


----------



## Ian

When did they start doing these trials? Have most people remained disease free so far?


----------



## Iya

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


----------



## ThanksP

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.


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.


----------



## Stacyface

Brian'sMom said:


> stacyface,
> Are you considering stem cell transplant for RJ?  Why is it harder for the younger patients do you know?



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.


----------



## Brian'sMom

Stacyface,
I saw the link. Its interesting and exciting. I hope you keep us in the loop as your son goes thru it. I think you may find this link interesting too. Its Jan 2011 article where they say scientists have found the 'master switch' for key immune cells in inflammatory diseases. http://www.medicalnewstoday.com/articles/213872.php


----------



## Stacyface

Interesting....this disease will be licked within the next ten years...or sooner hopefully.


----------



## Fog Ducker

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!


----------



## Pirate

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


----------



## sabin

@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?


----------



## Ms Cordelia

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!


----------



## Stacyface

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!


----------



## Ms Cordelia

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!


Stacyface:
I'll make a thread describing our experience with hookworms. I'll PM you to let you know.


----------



## Slandur

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.


----------



## Boioiod

As a new crohnie, the past 14 pages are an inspiration. Thank you, and my guts girgle the same!


----------



## f_else

Good luck Ziggy! I hope your stem cell harvest goes well. It is so exciting to hear about these cutting edge new treatments


----------



## scotishcanadian

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.


----------



## Mr. Izzy

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.


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!


----------



## scotishcanadian

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!


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. :]


----------



## KVD

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?


----------



## effdee

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.


----------



## Ckt

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...


----------



## AuntieEm

ckt, I believe you probably are.  I have to fail one more biologic.


----------



## Ckt

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!


----------



## Lawyerboy

Hi Ziggy,

How are you? Are you still in remission?


----------



## AuntieEm

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.


----------



## Avw

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!


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.


----------



## Guest9283

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.


----------



## Ckt

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:


----------



## Avw

That's great news! They really are amazing people! Good luck, hope it all goes smoothly!


----------



## Lawyerboy

Are you still well Ziggy?


----------



## AuntieEm

That is SO fantastic CKT!


----------



## Guest9283

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:


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


----------



## effdee

Definitely leave the relevant medical parts of it up! I still give your blog to people who are interested in learning more.


----------



## Ckt

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!


----------



## Ckt

Haha!i meant mr ziggy!!autocorrect sucks!!


----------



## Guest9283

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!?


----------



## Ckt

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!!


----------



## AuntieEm

I can't wait to follow your progress ckt!
Shall we say... Batter UP!


----------



## tichard

[
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]


----------



## Guest9283

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.


[/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).......


----------



## brunotheannoying

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!


----------



## daliac51

Guest9283,

Are you getting or got the Mesenchymal Stem Cell ??

Sure pray you are doing well.
Mig


----------



## Avw

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.


----------



## Farrah

You don't need two HLA matches to participate in Dr. Burt's allogeneic bone marrow transplant anymore.  Only one is sufficient.


----------



## Maggieham

*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


----------

