My Stem Cell Journey

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

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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.

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

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

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%!

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

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

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

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

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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.

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%!

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

....

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?

.....

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.

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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".

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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!

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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.

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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.

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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.

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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!

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

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!

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.

Missing You

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

Are you OK?

Are you :well:

Thinking about you,
Dusty

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

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

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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.

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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.

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

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!!!

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

Ziggy

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

Andre

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

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!!!!!

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

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.

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

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!!!!

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

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!!

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

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Poppysocks said:

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

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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 =)

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

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

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.

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!!!!!

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How is EJ??

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.

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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.

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....

Mr. Ziggy said:

How is EJ??

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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!!!

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

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

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:

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!!!

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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

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

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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!

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

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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.

....

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.

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

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.

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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.

....

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

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

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.

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.

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

Mr. Ziggy said:

I feel truly blessed & humbled.

-Ziggy

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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!!!

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

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

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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.

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.

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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.

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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

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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.

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Pen said:

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

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

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

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

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

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

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

Thinking of you Zig, xxxxxxxxxxxxxxx

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.

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.

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

Sue

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

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

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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!

beth said:

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

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

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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

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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!

Kelly said:

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

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Thanks Kelly!

Dallies said:

Thinking of you Zig, xxxxxxxxxxxxxxx

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Thanks Dallies, I hope Meg continues to feel better!

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.

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

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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

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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!

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!

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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?

....

Thanks for the update Zig!!

don't let it die!

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Dexky said:

Thanks for the update Zig!!

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No problem bud!

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

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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!

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

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!

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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.

Dras said:

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

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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).

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

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.

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

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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.

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