# My Stem Cell Transplant Blog



## effdee

Link to my blog: http://mypsct.blogspot.com/

I'm scheduled to be evaluated next week (3/7-3/9) for the transplant. I've tried and (eventually) failed Pentasa, Entocort, Sulfazine, Prednisone, Azathioprine, Remicade, Humira, Cimzia, LDN, some more of the milder 'maintenance' drugs I know I'm forgetting, and the SCD.

I'm currently on Cimzia, LDN (it's helping slightly, but not much), Amitriptyline, Aciphex (reflux), smoking (vaporizing) marijuana on and off, and sticking pretty closely to the SCD (still drinking milk). My symptoms have been up and down over the last few weeks, but I have no fewer than 8-10 bm's and up to 14 or so, usually with diarrhea and bleeding, lots of burping whenever I eat/drink or go to the bathroom, and moderate stomach pains.

I should find out whether or not I'm eligible by the 9th after I see Dr. Burt. I'll be sure to update this and, if I do the transplant, I'll make a blog (in some fashion) about it.


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## Cat-a-Tonic

Good luck with everything!  I hope you are able to get in and it works wonders for you.  I'm not even diagnosed yet myself, so stem cell therapy is a long way off from being an option for me, but it's really interesting and exciting for me to read about others' experiences with it.

If you get accepted, I'm looking forward to reading your blog!  Best of luck and let us know how it goes!


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## xJillx

I wish you luck!  Please do keep us posted!


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## effdee

Thank you both - will do!


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## DMS

Good luck - I hope you get accepted and that there will be another success story for stem cell therapy.  

Looking forward to your updates.


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## JJOM

I am curious as to what would make you ineligible?

You have clear 'refractory' disease.

*I ask, because I have pretty much failed everything on your list except LDN (which I try next), and may have to look at this path too (stem cell).

Have they expressed what would make you ineligible, like some other preexisting condition? Or, do you have to be Really, Really ill (severe symptoms etc..)? 

I hope it works out for you, and will be sending you my thoughts and wishes.


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## Cat-a-Tonic

JJOM:  I believe Mr. Ziggy outlined the eligibility requirements in his thread about stem cell treatment.  If I'm remembering right, the main requirements are that you have to have been diagnosed for at least 5 years, and you have to have tried and failed all the usual mainstream treatments (steroids, biologics, immune suppressors, etc).  Since I'm undiagnosed, and since Entocort is working well for me, I wouldn't qualify.


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## ThanksP

Best of luck to you!  

I'm curious how the travel is paid.  Is it paid thru your insurance, out of pocket, combination, etc?  Also, do they also pay for a family member while you are there?

Cimzia is failing me as well so I'm always very interested in anything I can read about this treatment.


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## bobtheman

good luck. i hope it works extremly well and it is a miracle cure for you.


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## effdee

JJOM said:


> I am curious as to what would make you ineligible?
> 
> You have clear 'refractory' disease.
> 
> *I ask, because I have pretty much failed everything on your list except LDN (which I try next), and may have to look at this path too (stem cell).
> 
> Have they expressed what would make you ineligible, like some other preexisting condition? Or, do you have to be Really, Really ill (severe symptoms etc..)?
> 
> I hope it works out for you, and will be sending you my thoughts and wishes.


In my case, the only things that would make me ineligible would be that my Crohn's isn't severe enough at the evaluation (turns out I've been my sickest in a while at the perfect time - my colonoscopy this morning showed very active inflammation, so I think I'm good there) or that I would not be healthy enough to handle the chemo required for the transplant. They do a lot of pre-testing right before you would start the mobilization chemo to check for every and anything that might be an issue. I'm in pretty good health aside from Crohn's, so I don't forsee any issues there. If there were, though, it would depend on what it was. It could be something they could treat/fix and then proceed with the transplant after you've recovered.

In general, yes, you have to be pretty ill with Crohn's, though. I'm not exactly sure what that means to the transplant docs but I will ask when I see them and let you know what I find out. That's been one of my biggest questions.

Thank you!


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## effdee

ThanksP said:


> Best of luck to you!
> 
> I'm curious how the travel is paid.  Is it paid thru your insurance, out of pocket, combination, etc?  Also, do they also pay for a family member while you are there?
> 
> Cimzia is failing me as well so I'm always very interested in anything I can read about this treatment.


Thanks!

The travel/hotel for the evaluation has been out of pocket for my family so far. Paula (one of the transplant nurses) said not to mention "stem cell transplant" to my insurance company or else they'd get all riled up! I'm going to look into possible reimbursement once I get home. As for the travel/hotel for the transplant itself, I know some have gotten a sort of travel allowence for it. I'll try to find out more about that later.

My mother, luckily, has a bunch of paid sick days/ill family member days saved up so she's covered for the evaluation. I think she'd have enough for majority of the transplant process, as well. That's all through her employer, though. My insurance wouldn't have a hand in that.


If anyone has questions feel free to ask. I'd love to get some answers for you.


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## gt91

any update effdee? i have also contacted Dr. Burt regarding my condition. I haven't heard back from them yet. Btw, what insurance company do you use?


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## effdee

I just got back home a few minutes ago. I've been accepted for an allogeneic stem cell transplant using umbilical cord stem cells. The next piece to work on is getting insurance approval. I have CareFirst BlueCross/BlueShield PPO which Dr. Burt said is a huge pain to fight with, but they have paid a majority of the time.

It still hasn't sunk in that I could very realistically live without Crohn's soon. I'll keep you all updated. Time for bed.


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## effdee

So the trip went very well. No real problems/issues with anything. The evaluation took place at Northwestern Memorial Hospital and I have to say it is a fantastic place. Everyone was very pleasant and helpful. Only really had to wait more than a couple minutes for the CT enterography. The colonoscopy and CT enterography showed very active Crohn's in my colon.

I saw Dr. Craig and we went over symptoms, medications, and the usual questions. He examined me, then we did a brief history and he thought I would be eligible for the transplant, and sent a message to Dr. Burt saying so. My blood work results hadn't come in yet but he said he would go over them once he got them.

My visit with Dr. Burt was similar. A bit more in depth history, current symptoms/medications. No medical issues aside from Crohn's. Dr. Burt was interested in doing an allogeneic transplant rather than autologous because, if stem cells from a non-Crohn's patient were used (meaning not my own or my brother's since he has Crohn's, too), it would decrease my chances of relapse. He said at 3 years out, 80% of patients had relapsed but were in remission with medication and thought using stem cells from umbilical cord blood would do even better (he has only done it with one other Crohn's patient so far). From what little I currently understand about that part of it, getting the allogeneic transplant will add the risk of graft vs host disease. Dr. Burt said that the way they do it, it "shouldn't" happen, but that's what I don't completely understand yet.

My blood work results were ready shortly before my appointment was over but I forgot to ask about it (head spinning from everything else), so I'll get in touch with the nurse tomorrow to ask about it.

My insurance company is one of the biggest pains in the ass (literally) about paying for this, apparently, so it could be a matter of months before they approve it, if they do. Dr. Burt said it was $125,000 (less than I thought) and kept insisting we'd be able to fight enough to get it paid for, but it's at least within a realm of possibility for my family to afford it if it comes to that. The financial team at Northwestern is supposed to write a letter to my insurance company and work with them to get it taken care of. It's possible that my mom (my insurance is through her) can ask her employer to get involved and pressure the insurance company to pay and help things along.


Feel free to ask any questions in case there's something you'd like to know that I left out. I'm still exhausted so I probably could have gone over everything a bit better but, oh well!


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## gt91

thanks for the update, effdee, glad it went well. 
it seems like the relapse rate is a little high. If I had the transplant, I wouldn't want any medication afterward.


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## joshw2011

Yeah the relapse rate is not what I was expecting at all... From what Ziggy said it sounded like it was either a cure or something to keep you Crohn's free for years and years...


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## effdee

Since the jury is still out on the real trigger for Crohn's, it makes sense (to me) that it's almost inevitable to relapse. If you have Crohn's, you've already had the genes mutate once that cause Crohn's. There isn't really anything being done to that, just the immune system. The next big piece would be to find out what can be done to reduce the chances of that happening. 

I wouldn't be hung up on having to take medication in the future. Honestly, I'd do the transplant if it only just made everything that's stopped working for me work again. Being on medication is completely acceptable, for me, as long as the disease is under control and I could function, get through school, and so on.


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## gt91

point taken, effdee. 

I don't know if you've read Dr.Burt's paper regarding long-term follow-up (5 years) of his stem cell transplant trail study. Out of 24 patients that had stem cell transplants, *9* patients have not relapsed to date, and of 15 patients who restarted therapy 8 patients subsequently became medication-free for the second time. Percentage of patients who remained in remission independent of therapy was between 70% and 80%.

As long as your condition is in remission and you don't have to take steroids, I think the transplant is well worth it. Let us know how things go.


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## Slandur

update please   when will ur transplant be? when will you find out?


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## JJOM

gt91,

Do you know where we can read the paper you are referencing? I would appreciate it.

Thanks,

JJOM

I would also like to 'publicly' thank effdee with his help with a few questions I had in a recient PM.

'Effdee's journey' has already been a great help to me. :dog:


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## joshw2011

http://www.stemcell-immunotherapy.org/pub_pub.html#cro

This has several Crohn's articles. The specific article is at 

http://www.stemcell-immunotherapy.org/publications_pdfs/6123-2.pdf


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## effdee

Slandur said:


> update please   when will ur transplant be? when will you find out?


Nothing to update yet, unfortunately. Still playing the waiting game.



Always happy to help, JJOM!


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## effdee

Still no word from my insurance company. They lost some of my paperwork, which Northwestern had mistakenly shredded so they couldn't send it again, but I still had copies of what they needed and faxed it to them.

I've been feeling a bit better over the last week and a half or so. I had a Cimzia dose around then, so it seems like I'm getting some benefit out of it for a couple days, at least.


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## joshw2011

I hope everythink works out for you! I too am waiting on insurance! My GI and I contacted Northwestern and they approved me for a visit, and they are now working on getting some old medical records, just picked up my most recent records copied today and mailing those soon. Basically just waiting on insurance to approve a "second opinion" ... Which could be a struggle because I live in Dayton, Ohio so the insurance will want a second opinion somehwere closer than Chicago, but I can still hope for the best! My doc said the insurance could take a few months so now I just patiently wait...


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## guest23

I think the stem cell transplant Ziggy had done was exactly what he said it was - it gave him his life back.  You must remember that these patients are extremely ill - and the stem cell transplant completely cured 9 out of 24 patients - and of the remaining 15 that did have to take a course of treatment for a patchy area of inflammation or whatever, eventually 9 went back to no meds whatsoever.  So, for 17 out of 24 people to go from being the sickest of the sick, to living a life without crohns or meds is truly amazing.  I look forward to Effdee story - and hope and pray that his insurance company does not take long to do the right thing.  By the way, you do not have to be diagnosed for 5 years in order to be eligible for the transplant.  Basically, Dr. Burt (the immunologist and head of the transplant team, Dr. Craig (the gastroenterlogist), and sometimes Dr. Halverson (the colorectal surgeon) will discuss each case, and make an independent decision of whether they feel the patient should proceed with the transplant.  Dr. Burt makes the final decision.  I just pray that all these brave people who proceed with these transplants lead to a 100% cure oneday - where no-one has to live with Crohns ever again.


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## effdee

I was hoping my next post here would be saying when I'd be starting the transplant, but I still don't have my schedule yet. Still good news, though!

My insurance company has approved the transplant! Due to a few delays for various reasons, it will be another 4 weeks or so until I get scheduled. My blood arrived at the lab today for HLA testing (to find matching cord blood stem cells). It will take 2 weeks to get the results, 2 weeks to look through the registry for a match and obtain it, and then I will be scheduled. It looks like I'll be starting sometime in July.

No significant changes in my health. Still the same old up and down. Cimzia helps a little bit for about a week and a half after each dose. My weight has been stable around 132lb. I'd really like to have a set date to look forward to, but it's relieving to know that it's going to happen before long.


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## LOSTnut

Would the process of approval have been easier if it would have been your own cord blood? Do you happen to know? 

Not that it matters to me. Banking cord blood wasn't an option when I or my daughter were born. Just wondering ....


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## JJOM

Great to hear effdee. I have been hoping to hear good news about this (temped to email you a couple of times, but I figured it will play out as needed).

LOSTnut's question is interesting. My first child was born a couple of weeks ago, and we did 'bank' the cord blood. I guess for a disease like ours, that probably has a genetic component, a patient may not want to use their 'own' stem cells. Hopefully those cells will never be needed, but with the way medical technology is headed we figured it was a great 'insurance' policy.

Hey, Maybe some day I could 'borrow' some of my kids stem cells for my crohn's. 

Question for effdee: Have they told you to do anything to prepare for the chemo/treatment?


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## effdee

LOSTnut said:


> Would the process of approval have been easier if it would have been your own cord blood? Do you happen to know?
> 
> Not that it matters to me. Banking cord blood wasn't an option when I or my daughter were born. Just wondering ....


Great question. I'm not entirely sure, but it's possible that would have made things easier. From what I understand, part of the attractiveness of cord blood stem cells is their naivety, meaning they're 'potent' stem cells without many major biological influences at that stage. I would think having stem cells from my own cord blood would nearly eliminate any risk, as far as graft rejection and graft vs host is concerned, and still be good candidates for use as they weren't as 'involved' with my immune system compared to stem cells obtained via the autologous route. 

As far as the approval processes for being accepted for the study and insurance coverage, I can't say.  I will ask Dr. Burt about this and make a post about it when I can talk to him. For the insurance side, I have no idea what they base their decisions on and what could influence it. It would make sense that they're more inclined to pay for something with a lower risk, but who knows.



JJOM said:


> Great to hear effdee. I have been hoping to hear good news about this (temped to email you a couple of times, but I figured it will play out as needed).
> 
> LOSTnut's question is interesting. My first child was born a couple of weeks ago, and we did 'bank' the cord blood. I guess for a disease like ours, that probably has a genetic component, a patient may not want to use their 'own' stem cells. Hopefully those cells will never be needed, but with the way medical technology is headed we figured it was a great 'insurance' policy.
> 
> Hey, Maybe some day I could 'borrow' some of my kids stem cells for my crohn's.
> 
> Question for effdee: Have they told you to do anything to prepare for the chemo/treatment?


Go ahead and shoot me an email when you have some time. I'd love to hear how you're doing with things.

Congrats, JJOM! Banking your child's cord blood definitely sounds like a great idea. There's more and more being done with stem cells each day.

Nothing too specific about preparing for chemo. I'm doing my best to keep my weight up, and avoiding other illnesses is always a good thing, since you want to be as healthy as possible in general going into chemo.


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## LOSTnut

If I would have had my daughter after becoming sick and banking being available I would have jumped on it. 

But, as I said, back then it wasn't an option and I know the initial banking is a bit pricey. Still, if available and healthy I probably would have, at least, donated the blood and tissue. 

Personally, I think it is great, especially when you think what good it can do and that it is basically treated like biohazard and discarded of.


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## SdN

Best of luck to you effdee you're a true fighter.


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## effdee

Well Northwestern put my name in for the patient-first room at the Worcester House at the beginning of last week, and the room opened up on Thursday so I flew to Chicago on Friday. My pre-testing was originally scheduled for the week of July 25th, but they were able to reschedule most of it since I got here early so testing will now start tomorrow (the 11th). I'm scheduled to be admitted to the hospital for the transplant on August 16th.

I'm going to try to setup a blog for everything today and I'll post the link when I do.


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## Crohn's Mom

best of luck to you !


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## DougUte

Effdee,  I just found this thread. I hope everything goes OK today. Good Luck.


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## JJOM

The ball is really rolling now, Awesome. Looking forward to the blog to learn about the testing, etc. :dog:

Nice that they provide access to a room. Are there any other patients Worcester House (sounds like a dorm)?

Quick question: Is the team at Northwestern mainly looking to do donated stem cells now? Or is the decision on what transplant to do case-by-case?

J


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## Dexky

DougUte said:


> Effdee,  I just found this thread. I hope everything goes OK today. Good Luck.


Me too Doug!!  

Please keep posting here too EffDee after you start your blog, I mean
Best of luck to you!!


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## Cat-a-Tonic

Effdee, I'm looking forward to hearing how it goes and to reading your blog when it is up!  Please keep us all posted, and best of luck with everything!


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## effdee

Thanks again for all of the kind words, everyone. I finally got what I wanted to posted on my blog. I'll keep reading here so you can comment/ask questions here.

http://mypstc.blogspot.com/


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## effdee

Hi everyone. Turns out I forgot to proof read the blog URL (stc instead of sct) so I changed it. Sorry for those who had it bookmarked!

http://mypsct.blogspot.com/


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## effdee

Just put up a post for today.


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## Dexky

Well done Patrick!  Thanks for the heads up!  Good luck!


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## xJillx

Thanks for sharing!  Good luck, Patrick!


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## effdee

Just put up a post for the dental appointment.

http://mypsct.blogspot.com/

Thanks, Mark and Jill. I appreciate all the support!


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## effdee

LOSTnut said:


> Would the process of approval have been easier if it would have been your own cord blood? Do you happen to know?


I asked Dr. Burt yesterday and he said it was a good question. It didn't seem like something he considered since banking cords is so recent the only patients who would have the option would be too young for the transplant anyway.

Using your own banked cord would eliminate the body recognizing the infused stem cells as foreign, but you would run into the problems that 1 cord doesn't always yield enough stem cells for the transplant, and the stem cells would be coming from your own immune system, the predecessor of a Crohn's developing immune system. Although the stem cells would be much younger and better than an autologous transplant, it still might not be ideal in that the relapse rate might not be any better than an autologous transplant since it would still be from _your_ immune system. It seems to be somewhat of a risk:reward situation in that donor stem cells that come from a healthy immune system would give you the best chance at the new immune system being healthier and less prone to relapse than before, but carry the small risk of graft rejection and GvHD. The impression I get from Dr. Burt is that the risks of either of those occurring, and them being severe, are really, really low, so the potential benefits with donor stem cells far outweigh the potential disadvantages.

I'm not sure how well I explained that so let me know if it I should clarify anything.


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## Dexky

Thanks for the post heads-up Patrick!  Please keep doing that!  Continued good luck!!


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## effdee

Just made another post. Turns out things were going too well and I needed some excitement.

http://mypsct.blogspot.com/


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## Dexky

Do the docs think the aggravation of the scope along with the inflammation caused all that?  Phew, hope you're still improving Patrick!


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## effdee

Yeah, that's the assumption. Things would have gotten worse before they got better if something actually was perforated. The fever went away overnight so I'll have solids for lunch and be discharged this evening if that goes well.


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## LOSTnut

I guess I understand what the doctor is trying to say. However, why do they then treat certain chronic diseases and cancers with stem cells and cord blood successfully?? 
According to this explanation the cord blood and stem cells would potentially develop into the same "sick" cells and nothing is gained?? 
Just wondering ....


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## effdee

It's exactly what you said, a treatment, and not a cure, unfortunately. Stem cells are the best/most potent at repairing and healing things that have been damaged, to an extent, but once the effects of the stem cells wear off it's entirely possible to get sicker again. I'm not sure but I wouldn't think infused stem cells alone would change the makeup of the immune system. Good question.

I just got word that I'll be discharged today! I'll work on another blog post tonight or tomorrow to fill in the other details.


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## effdee

Posted another update. That should cover everything that went on.

http://mypsct.blogspot.com/


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## Dexky

Hey Patrick, I know Dr. Burt can't talk about particular patients but do you know how many have completed sct under his trial and what his up to date success rate is?

I hope this setback is mild and temporary for you Patrick!!


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## effdee

Good question. I asked my transplant nurse and here's what she was able to tell me.

Just one patient so far with cord blood, in 2009, who has been in remission since. No symptoms. One of their doctors wrote a paper on the case which is awaiting publication, so they can't share more about it yet.

They've done 27 autologous on study, and 5 off study. I believe off study means the protocol was altered for one reason or another so it wouldn't count as the same procedure. I'll ask for clarification and let you know.

Here's the latest for the autologous transplants:



> Eighteen of 24 patients are 5 or more years after transplantation. All patients went into remission with a CDAI less than 150. The percentage of clinical relapse-free survival defined as the percent free of restarting CD medical therapy after transplantation is 91% at 1 year, 63% at 2 years, 57% at 3 years, 39% at 4 years, and 19% at 5 years. The percentage of patients in remission (CDAI < 150), steroid-free, or medication-free at any posttransplantation evaluation interval more than 5 years after transplantation has remained at or greater than 70%, 80%, and 60%, respectively.


The 5 most recent patients were off study. Not sure what they're allowed to say about them, but I'll inquire about that, as well.

For now, Dr. Burt and company believe cord blood transplants will provide the most enduring remission and that the mixed chimerism (the newly formed immune system that gets its makeup combined from your own immune system and the infused stem cells) of the cord blood will fend off any inherited Crohn's autoantibodies that could possibly surface after the transplant.

Although some patients on the autologous protocol have relapsed, it appears that they have a much better response and increased sensitivity to TNF-inhibitor medications after the transplant, whereas they were not effective or minimally effective prior to the transplant. That being said, they are working towards doing exclusively cord blood transplants for the Crohn's patients.


Things are still going better for me. I think this is the best I've felt in quite a while, despite the colonoscopy complications, thanks to the Cipro and Flagyl. Go figure!


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## Dexky

Thanks Patrick!  I'm assuming you will be having cord blood tp.  It's very interesting and very hopeful.  Please keep posting and blogging!!


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## effdee

Will do!

I heard back about what "off study" means. It means that the patients did not qualify to be on study, or Dr. Burt did not believe the benefit would be very significant in their cases, however the patients wanted to proceed with the treatment.

So it sounds like they have the option of still doing the transplant on patients who don't quite meet all of the eligibility criteria, as long as it wouldn't be too much of a risk. I vaguely remember hearing that they rarely do the transplants out of compassion, so that must be what they mean.


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## effdee

Just posted another update. Still doing well. One more week!

http://mypsct.blogspot.com/


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## Dexky

Awesome Patrick!  It feels a bit like you guys are pioneers blazing a trail for the future!!  Hope you enjoy that last meal...out!!


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## effdee

Another update. 2 day delay because the cord blood won't quite be ready.

http://mypsct.blogspot.com/


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## Dexky

Hope the delay doesn't cause a problem with the Cimzia effectiveness.  It's getting close now though Patrick!!  I know you're very excited to get on with it!!!


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## effdee

That's the only thing I'm concerned with. I'd love to get things started, but 2 more days of vacation here isn't bad at all. The more time I spend in Chicago the more I'm liking it.


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## effdee

Got the PICC line placed today. Still feeling pretty well.

http://mypsct.blogspot.com/


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## Dexky

I have an over-active imagination and that wire traveling up your vein gives me phantom pains.  Thanks for keeping us up to date Patrick.  Enjoy that last meal on the outside!!


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## effdee

I didn't feel anything aside from pressure once he gave the shot to numb my arm. The catheter going in feels exactly like you would think. I just kept my mind on other things and barely noticed it after a minute. Not bad at all. Always happy to see your posts!


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## Cat-a-Tonic

I've been following your blog.  Sounds like you've been having fun in Chicago!  Have you decided on where to go for your last meal?  My husband lived in Chicago when he was in art school, so although I've spent a lot of time in the city, it was during a time when we were both poor college students and couldn't afford to go anywhere nice to eat!  But, if you're looking for recommendations, I haven't been to either one of these but I will say that I've heard good things about Shaw's Crab House and also about Hot Doug's.  Shaw's is obviously seafood and Hot Doug's does gourmet hog dogs and fries.  I believe this is only done on the weekends, but they fry their fries in duck fat.  That sounds amazing, I both drool and hurt just thinking about it!  Anyway, have a great time no matter where you decide to go, and best of luck with the stem cell treatment!


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## xJillx

Thank you for keeping us up to date!  Good luck with the hair cut and enjoy your last meal!


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## effdee

Cat-a-Tonic said:


> I've been following your blog.  Sounds like you've been having fun in Chicago!  Have you decided on where to go for your last meal?  My husband lived in Chicago when he was in art school, so although I've spent a lot of time in the city, it was during a time when we were both poor college students and couldn't afford to go anywhere nice to eat!  But, if you're looking for recommendations, I haven't been to either one of these but I will say that I've heard good things about Shaw's Crab House and also about Hot Doug's.  Shaw's is obviously seafood and Hot Doug's does gourmet hog dogs and fries.  I believe this is only done on the weekends, but they fry their fries in duck fat.  That sounds amazing, I both drool and hurt just thinking about it!  Anyway, have a great time no matter where you decide to go, and best of luck with the stem cell treatment!


Thanks, Cat! One of my first thoughts about all the great food here was that I'm lucky to be able to afford it (I'll pass on those $50+ steaks, though). I've heard Hot Doug's is great, but haven't gone. There were almost too many recommendations for places to eat. We mostly picked by location and it was a little overwhelming, so we didn't get everywhere.



xJillx said:


> Thank you for keeping us up to date!  Good luck with the hair cut and enjoy your last meal!


Thank you, Jill!


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## effdee

One day down already!

http://mypsct.blogspot.com/


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## ThanksP

Glad you are enjoying my hometown.  The thing I miss the most about Chicago is THE FOOD, sorry I missed your blog about it.  OK, I miss the Cubs too but they'll never change LOL.

Best of luck to you, you are an inspiration and give such hope.  My thoughts are with you!


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## Dexky

You got a nice round head Patrick  It's a good look for you!  Hope you continue to feel well and as always keep posting!!


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## effdee

Thank you both. My mom and someone at the salon made the exact same comments, Mark. I'm liking it so far compared to dealing with all of that shaggy hair.


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## xJillx

A shaved head looks good on you!


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## effdee

Thank you. 

Still going great!

http://mypsct.blogspot.com/2011/08/day-7.html


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## ThanksP

xJillx said:


> A shaved head looks good on you!


I thought the same thing.  Ya just never know what you'll find under a full head of hair.


Hang in there! :thumright:


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## effdee

Another good day. Starting Cytoxan in the morning.

http://mypsct.blogspot.com/2011/08/day-6.html


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## DustyKat

Good luck!...:goodluck:


Dusty. xxx


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## Dexky

I hope you're not bored but I hope your day is uneventful!  Will you be allowed to mingle with Burt's other patients?  How many are currently undergoing SCT with Burt?

Sorry for so many questions Patrick, but I just thought of another.  Does Burt still personally oversee these early stages?  I suppose I'm hoping these things are being viewed as more routine!


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## effdee

I'm sure we'd be allowed to chat but, as you can imagine, they don't encourage immunocompromised people hanging out with each other too much. I think the nurse mentioned that Dr. Burt has 7 patients on the floor at the moment. Dr. Burt is involved the whole way, and visits the patients every morning. It's definitely reassuring to see him, and it gives you the chance to ask him questions directly. As long as everything is going as expected, I don't think he changes anything. The protocol is laid out and essentially routine, but he still oversees everything.

I'm happy to answer questions. I'm not sure of all the things people are interested in hearing about so feel free to ask. I always have the right not to answer!


----------



## effdee

Day -5, first of Cytoxan. No issues yet.

http://mypsct.blogspot.com/2011/08/day-5.html


----------



## Dexky

Holy cow Patrick!  My heart rate would get elevated just from hearing that list of meds they were going to put in me!!  Glad you seem to be handling them all w/o ill effects!!

Do you have any family who visits? or can they?


----------



## effdee

I've adopted the mindset that I'm giving them my body to do what they need and my brain is along for the ride to experience it.

My mom has been with me most of the time. She goes back to her room to keep a good sleep schedule. She'll stay around if I ask her to, or leave me if I want to be alone.


----------



## effdee

The real fun began today.

http://mypsct.blogspot.com/2011/08/day-4.html


----------



## Dexky

I'm glad you still go your sense of humor after all that fun Patrick!!  Hope today goes better for you!!  

I really appreciate your posting despite feeling so bad.  Don't know how you do it!!


----------



## effdee

If I didn't have a sense of humor through all of this, I'd be in tears all the time. 

You're quite welcome. I'm enjoying the blog myself. It really is so much easier to just post on that than to personally tell friends and family.


----------



## effdee

Even more fun today. Gotta make Dr. Burt earn his salary, right?

http://mypsct.blogspot.com/2011/08/day-3.html


----------



## Dexky

Sounds like you're keeping everybody on their toes Patrick!  I hope they get the antibiotic right today!  But I guess I'd take hives over nausea too, though I'm not sure about the swollen tongue and throat!!


----------



## effdee

I was too drugged up to really noticed how concerned everyone was. Once Dr. Burt was there and they gave me the Benadryl, Hydrocortisone, and Pepcid, I knew nothing worse would happen. The slow onset of the reaction was interesting, to say the least.

Today went much better, but not without a little extra attention. 

http://mypsct.blogspot.com/2011/08/day-2.html


----------



## Dexky

Well, comparatively speaking, I'd say it sounds like you had the day off yesterday.  I hope it continues to go smoothly!!


----------



## effdee

Today went great. Stem cell infusion tomorrow morning!

http://mypsct.blogspot.com/2011/08/day-1.html


----------



## Dexky

Wow, this seems to be moving much faster than Ziggy's!!  I'm sure it can't go fast enough for you!


----------



## effdee

Day 0 went great!

http://mypsct.blogspot.com/2011/08/day-0.html


----------



## DustyKat

Excellent news...anda:anda:anda:...and may it keep coming! 

Dusty. :heart:


----------



## Dexky

Cool Patrick!!  What would be the earliest you could be released?


----------



## beth

Hope it continues to go well!


----------



## Guest9283

I want to be one of the first here to wish you on your new birthday.
You did it Patrick! I can't tell you how excited I feel for you. You'll
be starting the beginning of your new life soon...without crohns! Just stay strong(and clean lol) through the next couple weeks while your new immune system grows. I don't think i mentioned it on the phone, but I wanted to thank you for posting this blog during your transplant for everyone else to see. 

Definitely a lot shorter and less complicated than the old
protocal Dexy 

Well done.

Below I've attached a link to something that should make you smile.
It is a study that started in 1982. It followed 4 patients who underwent an
allogeinic donor transplant for their leukemia. They all coincidently had crohn's disease too. Then there was one of the 5 patients who underwent a mixed autogulous+allogienic transplant, using both their cells and a donors. All were followed for 15 years. All 4 that did the allogeinic transplant stayed well for the remainder of the study - 15 years! Thats 100%.  http://www.ncbi.nlm.nih.gov/pubmed/9496932


----------



## xJillx

You're doing so great, Patrick!  You should be really proud of yourself.  

I hope you are having a good day today.


----------



## Dexky

^^@Zig^^  Very good to hear from you Zig!!  I trust all is going well


----------



## effdee

Thank you, everyone! The earliest I'd be released is probably September 9th, which would be 2 weeks from day 0. I'll get a better sense of that when the time gets closer.

Thank you, Mr. Ziggy. Again, I wouldn't have learned about this were it not for your blog. I still remember seeing it for the first time and thinking I hope I never have to do it. It's scary to think of where I'd be without it now. The least I can do is share my experience. If one person benefits from it like I did then it was well worth it. Thank you for the link to the old trial. Needless to say, I'm really excited to see how the allo transplants end up.

Day +1 went really well. 

http://mypsct.blogspot.com/2011/08/day-1_27.html


----------



## Dexky

Happy Birthday Patrick's immune system


----------



## MJones

Dexky said:


> Happy Birthday Patrick's immune system


Haha, this!


----------



## Guest9283

MJones said:


> Haha, this!


whats "haha this" ???????????????????????????


----------



## MJones

Mr. Ziggy said:


> whats "haha this" ???????????????????????????


I quoted Dexky saying happy birthday to Patrick's immune system, then essentially said "Ditto!" because I thought it was nice and well said.


----------



## raechel

How exciting!! I just stumbled on your blog today, and read it start to finish as quickly as I could! I'm so excited for you and selfishly so intrigued for myself... how did you get started in all of this? Did your home GI refer you or did you find the trial on your own?
Thank you so much for blogging your journey!


----------



## DougUte

Way to go Patrick!


----------



## Tesscorm

Congratulations Patrick!  :congratualtions:  Just read your blog and all your posts!  How very amazing for you and how amazing you are for sharing all your experiences.  No doubt you have already made a difference to many, many people and will continue to do so!!:highfive:

I'm being silly but am feeling so emotional for you right now!! :ylol2: I hope all continues to go extremely well for you.

I am looking forward to many more happy posts from you! :dance::dance:


----------



## sunflower

I am cheering for you!  I know I am a little late, but I am going to start following your story!  You are an inspiration and it is nice of you to jornal it all for us to follow.  I will be thinking about you!


----------



## Dexky

I keep your blog on my Top Sites, Patrick.  The last two days may have been routine but that's just what we like  I hope there is no more drama but don't stop your daily updates.  Please!!


----------



## Gwen pippy

Wow Patrick you really are an inspiration, for the first time ever I'm excited about a treatment, nearly tore carpet off floor running up 3 flights of stairs to tell my hubby your story. Will be glued to your updates. Not sure Ireland has it to offer and if it is i'd say it's expensive but I will be asking at next out patients visit.

Good luck and take care 
Love Gwen


----------



## effdee

raechel said:


> How exciting!! I just stumbled on your blog today, and read it start to finish as quickly as I could! I'm so excited for you and selfishly so intrigued for myself... how did you get started in all of this? Did your home GI refer you or did you find the trial on your own?
> Thank you so much for blogging your journey!


Unfortunately, my GI at the time knew very little about it. He was convinced that my Crohn's was actually fine and it was all in my head, so he wrote it off very quickly. I switched doctors since so I still have a GI at home if I need. The only reason I found the trial is because of Mr. Ziggy's blog about his transplant. I found more online about it after that, but it isn't easy to find if you don't know it's out there. I wish there was some sort of advertisement for it.


Thank you all for your kind words and encouragement! I'll be posting daily at least until I'm discharged and then we'll see after that.


----------



## effdee

Day +4, another easy day.

http://mypsct.blogspot.com/


----------



## Dexky

Thank you Patrick...on so many levels!!


----------



## mizgarnet

Keep on with those easy days!  Hugs!


----------



## xJillx

I love to hear you had another easy day.  I hope they keep coming!


----------



## Guest9283

Blows my mind to think Patrick is more than likely 100% crohns free right now. That chemo bringing his immune system down to 0.1 white blood count, means they killed off any immune disease too. He would now have some inflammation left from the crohns. This will go down, and the stem cells he now has will repair all damaged tissue, and grow a new immune system at the same time. This new immune system will have no crohns because he was not given back his own stem cells - he got a Donors. These stem cells will continue to heal colon and tissue for up to 1 year. However, it is more likely to be all healed long before they stop working. New mucosal linning will start to grow in 4 weeks from now roughly. That is about when I started to feel like a whole new me.

Hope Patrick doesnt mind me commenting. I can't help but want to comment. It's brining back so recent memories. lol


 Praying for ya bud. Seems like you're handling it better than I did!


----------



## Ian

Glad it all continues to go well for your Patrick, crossing my fingers you're cured!

I feel like pointing to this and saying 'I want one!' like a kid would at a toy in a shop window.


----------



## raechel

*Accepting new patients?*

Sorry you originally had to deal with a doctor that didn't take you seriously. I dealt with a similar situation, and it's just not right. But, I'm glad you've found a good at home doc now, and have been taken on by Dr. Burt who appears to be the leading doctor in stem cell work! I've been reading up on him through what i can find on google...Also, congrats on a fairly uneventful day  Although I'm sure the blurred vision was a little unsettling, glad it all cleared up 
Do you know if the trial you are on is accepting new patients? It is a trial right? Short of calling the Gastro. department at Northwestern, and asking them ' are you accepting new patients for the stem cell transplants' I don't really know how else to go about getting the ball rolling... but then maybe that is an okay starting place? I couldn't find anything helpful online as far as becoming a patient...
Chicago is about a 4 hour drive from my home, but from what I understand from your blog it is quite a drive from your home as well? And if accepted you just stay there for a couple of months? Are you allowed to have family stay with you or visit?

Thanks so much for all your help, and I understand if you don't have the time/energy right now to answer my millions of questions, but I can't help but ask, just incase you do have the opportunity to write back.... REst up and keep kickin' butt!!!

-Raechel


----------



## effdee

Thank you! Comment as much as you want, Mr. Ziggy (and everyone else)! I'm always happy to hear from you via any means. I still find it too good to be true to think that this is a real cure. 

Raechel: Dr. Burt is always interested in evaluating new patients. It's still a trial, yes. Calling the Division of Immunotherapy at Northwestern really is the best way to get started. That way you get all the info you need straight from them and can ask any questions. I'd be happy to give you their phone number so please PM me if you want. They're all extremely nice and helpful.

It was too far of a drive for me, so I flew out. The logistics vary for each person depending on how the evaluation goes, insurance approval, scheduling, and whatever else. They originally had me set to be here for 2 weeks for pre-testing, then go home for 2 weeks, then back out for about 4 to start the transplant. I had the chance so I stayed at the Worcester House because it saved so much money. Family is welcome to visit and even stay the night. You can ask for sheets for the pull out couch.


----------



## effdee

Day +5.

http://mypsct.blogspot.com/2011/08/day-5_31.html


----------



## Dexky

Patrick, are your transplant mates going as well as you?  I hope so!!  It sounds like the process has improved so much in such a short time, it's amazing!!


----------



## effdee

I'm actually not on the same schedule as the other patients, and I'm the only Crohn's patient. Getting pushed back 2 days threw things off a bit. I chatted with some of the other patients about the time they had their stem cell infusions, and they all said they didn't feel too bad and it was still so worth it. Everyone has been neutropenic for at least a few days now so there's been less interaction, as you can imagine. 

The process definitely has gotten ironed out over time, but I still feel very fortunate to have handled the chemo as well as I did. Yeah, I had an anaphylactic reaction to Campath, but I didn't feel rotten for days with nausea, vomiting, and fatigue. I expect to be more tired after engraftment and my body goes to work, but that's not bad at all.


----------



## Gwen pippy

Hey Patrick, Hope you're doing well today.

Gwen xxx


----------



## effdee

Day +6.

http://mypsct.blogspot.com/2011/09/day-6.html


----------



## Dexky

Steady on Patrick!!  Piece of cake


----------



## sunflower

Just looked in on you, and it looks like you are doing great!


----------



## effdee

Day +7.

http://mypsct.blogspot.com/2011/09/day-7.html


----------



## Guest9283

Ahh yes. I remember the group having to get a couple red blood cell infusions. Also had a platlet infusion. So don't be worried if you gotta get one or two Patrick. It's normal for them to see. Keep sailing bud!

The neupogen shots Effdee is taking will stimulate his body to make more stem cells now. These are the shots he talks about taking in the morning now for this week. Sometimes the patient might feel some bone pain. It shouldn't be too bad, and is an indication the stem cells have be multiplying. Some people dont get pain. Effdee is probably feeling really really tired as he says. Not to mention the benadryl they give him every day to pre medicate. Lots of ZZZzzzz... i bet!  lol


----------



## Dexky

Thanks Zig!  I was a little afraid something was wrong!


----------



## beth

Thanks Patrick for keeping us all up to date, and Mr Ziggy for the explanation!


----------



## effdee

Thanks for clarifying that, Mr. Ziggy. The chemo will still be killing off cells until the stem cells engraft and my body starts production. It would be strange to not need transfusions. I'd expect to need more sometime next week. I'll note that in the next blog post.

Surprisingly, Benadryl doesn't knock me out anymore. I don't feel drowsy at all from it, and it used to put me to sleep within an hour. I've been taking plenty of naps regardless, though.


----------



## effdee

Day +8.

http://mypsct.blogspot.com/2011/09/day-8.html


----------



## sunflower

I hope the blood transfusions are helping you feel better.  It is great to know that your bone marrow is working!  I hope you won't be afraid to take pain meds if you need them, and here is hoping your pain is mild.


----------



## Dexky

Hey Patrick, besides naps, how do you spend your time in there?  You must be about to go stir crazy by now!

Glad everything is still on schedule


----------



## effdee

I think I have a bit more energy since the red blood cells transfusion. The pain isn't nearly bad enough to take anything for it. 

I actually have most of the comforts from home I'm used to. I've got a laptop, wifi, my Xbox and Kindle. I'm a sports fan and they get ESPN here, I exercise when I feel up to it, and I have a friend in the area who visits occasionally. I'm pretty patient after all these years and waiting for this is so much easier than the hurry up and wait for other treatments that may or may not work. I know I'll be home by the end of next week and can get started on my new life.


----------



## raechel

When I read your posts, and they say things like ' home next week starting my new life' , it makes me so excited for you! Then, my mind wanders to, will that be me one day in the near future? Back to a normal life again? How amazing!! Keep up the posts, you are making me more optimistic daily! :-D


----------



## effdee

Glad I can help, raechel!


Day +10.

http://mypsct.blogspot.com/2011/09/day-10.html


----------



## Allison

Just wanted to let you know I found your blog last week (thanks to Mr. Ziggy's thread alerting us) and have been keeping up with your progress and praying for your full recovery.  It is AMAZING what they are doing with you, and also with Mr. Ziggy's transplant success (I read his whole blog too), and with the others.  

(I wasn't able to tell you about it until today because I lost my Crohnsforum password & just found it!  :redface


----------



## effdee

Thanks, Allison!

Day +11.

http://mypsct.blogspot.com/2011/09/day-11.html


----------



## beth

Must be pretty boring for you hanging about in hospital, but good that nothing 'exciting' is happening! 

Take care.


----------



## xJillx

I am glad your throat is feeling a bit better, Patrick.  I was concerned you were coming down with something.  Take good care of yourself, buddy!


----------



## effdee

Thank you! Dr. Burt wasn't concerned in the slightest about a cold or anything. Things like that seem to be somewhat normal and they're completely on top of everything if it changed. My job is to tell them anything different I notice, and they check it out to see if it requires further attention or if it's nothing to worry about.

Day +12. Should be home within a week. 

http://mypsct.blogspot.com/2011/09/day-12.html


----------



## Allison

Home within a week!  What wonderful news!!  :thumright:


----------



## Dexky

I wish I could think of better words to describe the hope your posts give but I just keep coming up with awesome!!  Where's my thesaurus?


----------



## xJillx

effdee said:


> Thank you! Dr. Burt wasn't concerned in the slightest about a cold or anything. Things like that seem to be somewhat normal and they're completely on top of everything if it changed. My job is to tell them anything different I notice, and they check it out to see if it requires further attention or if it's nothing to worry about.
> 
> Day +12. Should be home within a week.
> 
> http://mypsct.blogspot.com/2011/09/day-12.html


Dr. Burt and his staff sounds so amazing.  You are obviously in great hands.

Hooray for being able to go home soon!!!


----------



## effdee

I know exactly what mean, Dexky. Saying thank you to Dr. Burt is incredibly understated but more words for it escape me.

Surprise! Going home tomorrow night! Day +13.

http://mypsct.blogspot.com/2011/09/day-13.html


----------



## beth

Wow! that's really good!


----------



## Dexky

That's the awesomest of all!!  I hope you'll continue to update Patrick, even if it's just to say "I feel great".  Especially just to say "I feel great"!!  Well done my friend!


----------



## ltrem

Cool thread! Good luck with the continuation!


----------



## Guest9283

I urge anyone that is calling Dr. Burts office, to keep calling on a daily basis if they don't contact you. Please keep calling, I know Dr. Burt surley would agree, and wants to help as many people as he can. If no one calls you back, please contact me and I will see to it that you are called back. I dunno if their just backed up with work, but it shouldnt take a week to call you back.


----------



## Guest9283

Great to see Patrick going home. 

Way to go bud!!!!


----------



## Brian'sMom

Ziggy,
Things still going great for you? Still crohn's free? Still no meds?


----------



## Guest9283

Brian'sMom said:


> Ziggy,
> Things still going great for you? Still crohn's free? Still no meds?


I am feeling good. I did however get my own stem cells. The new direction is donor stem cells. I believe in the donor option. If my crohns came back I would do the donor stem cell transplant in a heart beat if i could. I have realistic expectations of the autogulous sct - im sure you've read the statistics. This trial Effdee is on with donor stem cells have kept 4 people in remission for 15 years. Its where all the hope lies. Burt also said i would automatically be accepted if I relapsed.

Hows your son? Pm me if you like - i feel like im hyjacking effdees thread. lol


----------



## Brian'sMom

Ziggy, Yes, I agree...I have a bad habit of hyjacking...like its all one big conversation!! 

Effdee, I am so glad you are getting to go home!! Please keep us all posted. All of us with young children are closely watching all this stem cell stuff. Our kiddos can't participate, but they will benefit someday from all your bravery!!! You're in my prayers.


----------



## effdee

I'd like to echo what Mr. Ziggy said. To anyone calling their office, follow up within a few days if you don't hear back. I'm not sure if it's a matter of being busy or losing track, but they ARE interested in more patients! Once I started the process with them, it rarely took more than a day to hear back from a question or what have you. If it did, though, another call would take care of it. Don't get discouraged about it. You're probably used to the run around from doctors already, right?! This one is well worth it!

I believe Duke has a pediatric trial either starting or recently underway, and Dr. Burt will be doing pediatric trials when Northwestern's Children's hospital is complete (wish I knew a time estimate for that).


Day +14. I'll go over more soon. Enjoying being home for now!

http://mypsct.blogspot.com/2011/09/day-14.html


----------



## Dexky

Brian'sMom said:


> Please keep us all posted. All of us with young children are closely watching all this stem cell stuff. Our kiddos can't participate, but they will benefit someday from all your bravery!!! You're in my prayers.


Amen, Kathy!!

Wow Patrick, two months!!  Enjoy home!!  I assume they'll still monitor things closely for a while.  Please keep posting


----------



## effdee

Day +16.

http://mypsct.blogspot.com/2011/09/day-16.html

I'll be posting less frequently but still regularly. I'm guessing weekly for now.


----------



## Tesscorm

I'm so happy for you that all is going so well !  Wishing with all my heart that all continues to go well for you!    Thank you so much for sharing your experience with everyone, you have given so much hope and inspiration! :Karl:


----------



## Dexky

Patrick, if nothing else, just post a smiley face every now and again.  I'd just very much like to know how you are getting on!!


----------



## DougUte

Patrick,  thanks for sharing your experience. It has been very interesting to see.


----------



## effdee

Day +21.

http://mypsct.blogspot.com/2011/09/day-21.html


----------



## Dexky

Thanks Patrick!  Do you have any diet restrictions?


----------



## doctor's mom

I am so thankful for your and Ziggy's blogs. Ton of info and hope  for so many  affected with this stinky disease. Good luck with your journey!


----------



## effdee

Dexky said:


> Thanks Patrick!  Do you have any diet restrictions?


No restrictions. It's mostly a common sense and comfort thing. I'll be choosing to avoid salad bars and cooking beef to medium, a bit more than I used to.


----------



## Bernie1986

Wishing you lots of luck and will look out for your post )


----------



## Brian'sMom

Patrick,
So glad to hear that you're doing well. Its so fantastic!
I had a question for you about Dr Burt, (this has probably been mentioned somewhere), but does this stem cell transplant only help crohn's patients or is it being done for Ulcerative Colitis too? My son's aunt has UC and her GI is proposing a removal of her large intestine.


----------



## Guest9283

Brian'sMom said:


> Patrick,
> So glad to hear that you're doing well. Its so fantastic!
> I had a question for you about Dr Burt, (this has probably been mentioned somewhere), but does this stem cell transplant only help crohn's patients or is it being done for Ulcerative Colitis too? My son's aunt has UC and her GI is proposing a removal of her large intestine.


It is just for crohn's at the moment. Colitis can be cured with the removal of the colon. For this reason the FDA has approved the trial for someone diagnosed with crohns disease. I hope they start doing colitis down the road sometime. Sorry for the news...


----------



## xJillx

I hope you are enjoying being home!  Thinking of you, Patrick.


----------



## effdee

Day +28. I got sick, but I'm not feeling terrible.

http://mypsct.blogspot.com/2011/09/day-28.html


----------



## Dexky

Man, you scared me Patrick!!  I thought you meant possible stomach/crohns issues!!  Phew!!


----------



## xJillx

I hope this cold/virus is short lived.  Take care of yourself and rest up, mister!


----------



## Poppysocks

Nice thread


----------



## Gwen pippy

Hope that nasty ole cold gives you a break, good luck with all the tests next week. xxx


----------



## effdee

Sorry for the alarm! I stopped referring to stomach issues as being sick because they were normal for so long. Everything is still good on that front.

Day +35.

http://mypsct.blogspot.com/2011/09/day-35.html


----------



## Ashley1

Thanks for the update!  Good to hear that you are feeling ok considering what happened last week!  Would you mind sharing what the "chimerism" blood test is?  How often do they check your white blood count?  Thanks.
Ashley


----------



## Dexky

Awesome Patrick! Thanks!


----------



## effdee

Ashley1 said:


> Thanks for the update!  Good to hear that you are feeling ok considering what happened last week!  Would you mind sharing what the "chimerism" blood test is?  How often do they check your white blood count?  Thanks.
> Ashley


The chimerism testing will show what percentage of my immune system I got from the cord blood graft that took by comparing it to chimerism testing they did pre-transplant. They do the same thorough set of labs each time so weekly for a bit, then every other week, then monthly.


----------



## David

This is such a wonderful thread, thank you for keeping us updated and here's to continued success!


effdee said:


> No restrictions. It's mostly a common sense and comfort thing. I'll be choosing to avoid salad bars and cooking beef to medium, a bit more than I used to.


What's the reasoning behind no rare beef?



effdee said:


> The chimerism testing will show what percentage of my immune system I got from the cord blood graft that took by comparing it to chimerism testing they did pre-transplant. They do the same thorough set of labs each time so weekly for a bit, then every other week, then monthly.


It didn't dawn on me until you mentioned this that they're creating a chimera immune system.  AMAZING!

I heard an NPR report the other day about a woman who didn't test genetically positive as being the mother of her children.  It wasn't until they did extensive testing that they realized she was a chimera.  Part of her twin sister was her.  Instead of normal twins or siamese twins, they were one body, two people.  The kids were her sister's.  Crazy stuff.


----------



## Ashley1

David that is so interesting - I never thought of that either - so I did some research myself:

People who have received bone marrow transplants are actually chimeras, too. Bone marrow transplants are used to treat certain blood diseases and cancers. In these transplants, the doctor destroys the patient's bone marrow with special drugs or radiation. Then the doctor puts in new bone marrow from a donor.

These new bone marrow cells have DNA that's different from the patient's own DNA. And because bone marrow stem cells make blood, the patient's blood cells will have different DNA than the cells in the rest of his or her body.

All these examples show just how flexible embryos are at very early stages. They also show why ES cells are one of the holy grails of medicine. If we can control the flexibility of ES cells, we may be able to cure people of diabetes, Parkinson's, and many other diseases. Thank you, chimeras, for helping point the way!

That is just some of what I read.  My only question is - why do they implant 2 different (cord blood) immune systems in Efdee's transplant.  Why not only use one?  Wouldnt the one reject the other - why do they implant 2 different immune systems back into you?

Ashley


----------



## effdee

Day +42. Still doing pretty well.

http://mypsct.blogspot.com/2011/10/day-42.html




David said:


> What's the reasoning behind no rare beef?


For steak, I guess it isn't necessary to cook too much as the bacteria should only be on the outside, but I'd rather be safe than sorry. Ground beef needs to be cooked until there's no pink since you can't be sure what has picked up bacteria. 



Ashley1 said:


> That is just some of what I read.  My only question is - why do they implant 2 different (cord blood) immune systems in Efdee's transplant.  Why not only use one?  Wouldnt the one reject the other - why do they implant 2 different immune systems back into you?
> 
> Ashley


The benefit of using two cords is the increased volume of stem cells. Harvesting umbilical cord blood only yields around 75ml. One of the cords will be partially inherited, "winning out" over the other, and the other will just provide additional stem cells. The transplants can be done with one cord, which is done if multiple matches cannot be found, but having two is ideal.


Thanks for the comments and questions, everyone.

I ran across some interesting videos I meant to post earlier. They're parts of a public lecture by Dr. Burt about stem cell transplants and how he got started with them. Part 2 and 3 are on the sidebar.

http://www.youtube.com/watch?v=s3TgPFy1Ozo


----------



## Ashley1

Effdee,

Thank you for explaining why they try to use 2 different cord bloods in the transplant.  Got it  Also, wanted to say that I have seen the video you posted on Dr. Burt before, and I just watched it again.  It is just such a pity that most members are going to miss this, unless they log into your thread specifically - it is so interesting!  Next time you post, would you mind sharing how you are feeling?  Have you noticed improvement in your symptoms yet or is it too early to tell?  THank you for your time.


----------



## Artificial

Hi Effdee, 


I've only just found this thread but just wanted to say I'm glad everything going ok for you and thanks for posting about it, it's been an interesting read!

Rachel x


----------



## Dexky

Thanks Patrick!  When was the last time (pre-transplant) your blood numbers looked good?  May it continue for life!


----------



## effdee

That would depend on your definition of "good." It's been about a year since I was first anemic from that flare up, and my HGB was going down in the months before. Probably late '09 early 2010 for completely normal/good counts.


----------



## effdee

Day +49.

http://mypsct.blogspot.com/2011/10/day-49.html


----------



## Gwen pippy

Thats great about the labs looking good. Hopefully you won't have to wait too long for the chimerism results, take care of that sore throat. can't wait to see those lovely locks.

Gwen xxx


----------



## Dexky

After all those nice compliments about your perfectly round head!!!  On and up Patrick!  Sounds great


----------



## effdee

Day +56.

http://mypsct.blogspot.com/2011/10/day-56.html


----------



## Brian'sMom

Effdee, does the chemo have any lasting side effects on you?


----------



## effdee

Brian'sMom said:


> Effdee, does the chemo have any lasting side effects on you?


Cytoxan is carcinogenic, so it increases the risk of cancer. As far as day to day side effects, I haven't felt any since being in the hospital. I tolerated it all really well.


Day +63.

http://mypsct.blogspot.com/2011/10/day-63.html


----------



## ChrisP

Just read your whole blog. Thank you for taking the time to document your journey. I hope you continue to do well and live a symptom free life!

I'm staying tuned for updates.


----------



## effdee

Thank you, Chris.

Day +70.

http://mypsct.blogspot.com/2011/11/day-70.html

Turned out to be C. diff. Gotta love antibiotics.


----------



## Guest9283

Man that sucks that you got C-diff. Good to hear that there was a reason for your symptoms though. Lets get over that C-diff, and onto recovery!!


----------



## David

Best of luck dealing with the C Diff!

*hugs*


----------



## effdee

Thanks! I'd honestly take C diff symptoms over a cold. It hasn't bothered me too much. I'm feeling quite a bit better already.


----------



## xJillx

I am glad you are feeling a little bit better, Patrick.


----------



## effdee

Day +77. Still working on getting better.

http://mypsct.blogspot.com/2011/11/day-77.html


----------



## DustyKat

I so hope things continue to improve for you Patrick and the C Diff becomes a distant memory! 

Fingers, toes and everything else crossed!...:goodluck:

You certainly are an inspirational young man and a wonderful role model. :thumleft:

Thinking of you...:hug:
Dusty. xxx


----------



## effdee

Thank you, Dusty. 

Day +84, C diff still hanging around.

http://mypsct.blogspot.com/2011/11/day-84.html


----------



## Dexky

Cool Patrick!  How's the hair regrowing...going?


----------



## DustyKat

Sorry to hear the C Diff is still hanging on for dear life...:thumbdown:...but fab news about the labs! :thumleft: 

Any thoughts yourself on what they may decide? 

Dusty. xxx


----------



## mnsun

See Here: http://www.scientificamerican.com/article.cfm?id=swapping-germs

This may be an option, not only for C. Difficile possibly, if you find a receptive doctor, or can find a trial to get involved in...I don't know how one goes about enlisting, though.  The article came out this week describing this slightly disturbing treatment...you gotta do what you gotta do, I guess.  

I've seen a few articles over the past few years concerning this, just google/startpage: fecal transplants, fecal bacteriotherapy or fecal flora reconstitution.  Seems simple yet disgusting enough.  Good luck, anyway.


----------



## Guest9283

Good to hear Patrick!

Btw (I hope Burt doesn't read this lol) but i decided not to take any antibiotics when I was discharge from my transplant. I was supposed to take 3 different kinds for 6 months. Oops! lol



Edit: btw that is very dangerous, im not advising anyone do that. I knowingly took a risk there.


----------



## effdee

Dexky said:


> Cool Patrick!  How's the hair regrowing...going?


It's going well. Still a bit thin, but my head isn't cold all the time anymore. I'll take a new picture hopefully in the next few days.



DustyKat said:


> Sorry to hear the C Diff is still hanging on for dear life...:thumbdown:...but fab news about the labs! :thumleft:
> 
> Any thoughts yourself on what they may decide?
> 
> Dusty. xxx


One of the nurses mentioned Vancomycin is an option I could try. Other than that or more Flagyl, I'm really not sure, though. 14 days is "usually" enough to clear our C diff, but I don't know how the new immune system would change that since it's a bacterial thing, and I have a new gut. That's too much for me to pretend I know about so I'll gladly defer to the experts on whatever they decide for this.



mnsun said:


> See Here: http://www.scientificamerican.com/article.cfm?id=swapping-germs
> 
> This may be an option, not only for C. Difficile possibly, if you find a receptive doctor, or can find a trial to get involved in...I don't know how one goes about enlisting, though.  The article came out this week describing this slightly disturbing treatment...you gotta do what you gotta do, I guess.
> 
> I've seen a few articles over the past few years concerning this, just google/startpage: fecal transplants, fecal bacteriotherapy or fecal flora reconstitution.  Seems simple yet disgusting enough.  Good luck, anyway.


Thanks for bringing this up. I had read about it before but hadn't thought about it. I'll keep it in mind should it really drag on.




Mr. Ziggy said:


> Good to hear Patrick!
> 
> Btw (I hope Burt doesn't read this lol) but i decided not to take any antibiotics when I was discharge from my transplant. I was supposed to take 3 different kinds for 6 months. Oops! lol
> 
> 
> 
> Edit: btw that is very dangerous, im not advising anyone do that. I knowingly took a risk there.


Bad, Mr. Ziggy! It's actually probably not the _worst_ tradeoff. I can only imagine having healed intestines AND good gut flora in a few more months.


----------



## xJillx

I am glad you are feeling pretty good, even though that nasty C diff is still hanging around.  Crossing my fingers it clears up soon!  

Looking forward to seeing an updated photo with your new do!


----------



## effdee

Thanks, Jill.

I finished the course of Flagyl yesterday and we'll see how the next few days go. It could have been the Flagyl causing some of the symptoms, or any of the other handful of meds I'm on. I'll get another test for C diff done tomorrow and see how I feel. I figured it would be better to start the test sooner rather than later since Thanksgiving is this week.


----------



## effdee

Day +91.

http://mypsct.blogspot.com/2011/11/day-91.html


----------



## Gwen pippy

Good to hear things are turning around Patrick, do the docs feel it was the Flagyl? I'm sorry if this is a stupid question but how long will you remain immunocompromised? 
Myself and my family are following your story here in Ireland.
Take care
Gwen xxx


----------



## Guest9283

Awesome Effdee! You are approaching day +100. Said to be a general goal date, at which risk is a lot lower from now on. Not 100% obviously, it can take a year to get your secondary immune system back to 100%. Primary is probably good by now. No signs of HVGD, just like Burt said  Really brilliant.
Way to go!


----------



## Dexky

I wonder if there's a sub-forum for ingrown toenails??    I hope that's the worst thing you ever have to report from here on!!


----------



## effdee

Gwen pippy said:


> Good to hear things are turning around Patrick, do the docs feel it was the Flagyl? I'm sorry if this is a stupid question but how long will you remain immunocompromised?
> Myself and my family are following your story here in Ireland.
> Take care
> Gwen xxx


That's the assumption, at this point. I'm still continuing to feel better so C diff is gone. 

The simple answer is for as long as I'm on immunosuppressants (the anti-rejection meds). My immune system would be pretty good were I not on them, but it's necessary to eliminate as much of the risk of GvHD as possible. After 9-12 months post-transplant, I can come off of them. It'll still be a pretty new immune system at that point, but it won't be suppressed.



Dexky said:


> I wonder if there's a sub-forum for ingrown toenails??    I hope that's the worst thing you ever have to report from here on!!


It was pretty straightforward (dealing with it, not the nail), thankfully. 

I think I'm almost ready to start going to the gym again. That should be a pretty good test of my immune system. Maybe they'll hire me since I'll actually clean the equipment.


----------



## effdee

Day +98

http://mypsct.blogspot.com/2011/12/day-98.html

Finally took those pictures.


----------



## Tesscorm

Thanks, Patrick, for continuing to take the time to share your experiences!!  Sending the best of wishes that all continues to go well for you!!!


----------



## Guest9283

Tesscorm said:


> Thanks, Patrick, for continuing to take the time to share your experiences!!  Sending the best of wishes that all continues to go well for you!!!


+1 

Thank for keeping us informed on the details. Even Im learning things. Making history as you go. I'm sure Burt will sort out the donor cell issue.


----------



## Dexky

Thanks for the update Patrick.  That sounds a little frightening but you and Dr. Burt don't sound too concerned so I suppose I shouldn't be!  Hope the immune cells show up soon


----------



## effdee

Dr. Burt makes it hard to be too concerned. He wouldn't do anything he isn't comfortable with (the trial would get shut down if something went too badly - I'm not worth a risk like that!). I have no doubt that he knows what he's doing, and his tone didn't have an ounce of worry when he explained it to me on the phone, or ever, really. I know whatever he wants to do will give me the best chance. 

As a guinea pig, you just have to be patient with so many uncertainties. They may have done the chimerism testing this early to try to learn more about the process. It might turn out, once it's all figured out, that it doesn't usually happen until 5 or 6 months. Testing earlier/more frequently helps to figure that out.


----------



## Brian'sMom

Even tho donor stem cells aren't detected yet,  all your crohns symptoms are gone...like Ziggy?


----------



## effdee

Not quite 100% gone yet. There's still some healing that needs to take place over the coming weeks and months. I do feel great, though.


----------



## Gwen pippy

Loving the hair.

Gwen xxx


----------



## raechel

effdee said:


> Not quite 100% gone yet. There's still some healing that needs to take place over the coming weeks and months. I do feel great, though.


If you don't mind my asking, what kind of crohns symptoms are you still having? 

Also, on a slightly different matter, I have another question for you. Before the transplant were you having any extra intestinal manifestations from your crohn's? Like arthritis, or anything like that? If so, are those gone now?


----------



## effdee

raechel said:


> If you don't mind my asking, what kind of crohns symptoms are you still having?
> 
> Also, on a slightly different matter, I have another question for you. Before the transplant were you having any extra intestinal manifestations from your crohn's? Like arthritis, or anything like that? If so, are those gone now?


I go to the bathroom more frequently than I would consider normal/remission (once or twice a day, sometimes I'll go three or four). Occasionally a bit of looser stool, and reflux/burping when I eat. I can't tell for sure what's because of the meds and what's because healing needs to finish.

I would occasionally have joint pain (a few times a month) during really severe flares. Haven't had any joint pain since a few days after I stopped the Neupogen  injections.


Day +106.

http://mypsct.blogspot.com/2011/12/day-106.html


----------



## Brian'sMom

Ya, Maybe flagyl is the culprit. You didn't mention cramping...so that's good!!


----------



## effdee

I've been off Flagyl for a few weeks now. It's probably Acyclovir or Fluconazole that likes to be annoying.


----------



## effdee

Day +112.

http://mypsct.blogspot.com/2011/12/day-112.html


----------



## Dexky

I hope they get these nagging issues sorted Patrick.  I know you're anxious to test drive your new immune system.


----------



## effdee

Dexky said:


> I hope they get these nagging issues sorted Patrick.  I know you're anxious to test drive your new immune system.


Well I went into D.C. yesterday on the Metro so I think that was a pretty good test. It seems like a strange tradeoff, though. Take antibiotics and get C. diff but not other illnesses, or no antibiotics and you're taking your chances but C. diff is less likely.


Day +120.

http://mypsct.blogspot.com/2011/12/day-120.html


----------



## Dexky

You've had crohns a long time Patrick, can you say for sure the stomach issues aren't crohns related?  I hope it's the ab's!!  I'm really pulling for you old boy!  I hope you can enjoy the holidays!


----------



## effdee

I'm entirely certain it's not Crohn's, thankfully. It still feels like C. diff (or some sort of bug/bacteria), it's just not getting taken care of as easily this time.


----------



## Brian'sMom

Are you entirely certain because of blood markers or a recent colonoscopy? That's great if its not crohn's. Also, maybe since the chemo knocked your immune system...your body is just having some trouble fighting off stuff it normally would.


----------



## xJillx

effdee said:


> I'm entirely certain it's not Crohn's, thankfully. It still feels like C. diff (or some sort of bug/bacteria), it's just not getting taken care of as easily this time.



I am sorry you aren't well, but I am glad you are confident it's not Crohn's related.  I sure hope you can shake this infection soon!  It's been too long.


----------



## handle

Wow. What a journey you have been on Patrick. Thanks for the continual updates. I think it would be surprising if your tummy wasn't a bit upset by all those treatments! 

That was a brave trip on the Metro - good work. It all sounds really promising.
Take it easy,
All the best.


----------



## effdee

Brian'sMom said:


> Are you entirely certain because of blood markers or a recent colonoscopy? That's great if its not crohn's. Also, maybe since the chemo knocked your immune system...your body is just having some trouble fighting off stuff it normally would.


Not because of those, but I'm still 99% sure it's C diff. That, and I'm under the impression that the stem cells would be healing any would-be Crohn's activity that would occur at this point.


----------



## Brian'sMom

And C diff is curable! That's good. Hopefully you're rid of that nasty bug soon


----------



## Donnanne

Hi effdee, i have been following your blog.
My son is being evaluated for the stem cell transplant, nottingham, uk.
How are you now??? 
Best wishes, Donna.


----------



## raechel

That is so good to hear that the symptoms you are having may not even be crohn's related. Sorry it took me so long to get back on here and get your reply! I went to northwestern last week for an evaluation myself. Dr. Burt said I am a canidate! The next step is insurance approval, and then testing my siblings to see if either of the 2 of them could be a donor match. Do you have any siblings? If so were they tested?
Also, I just wanted to let you know again how thankful I am that you have written this blog. If you hadn't I may have never found out about the trial.:ybiggrin: Also thank kyou so much for being such an open book and so willing to discuss all the details of your journey!


----------



## lollypop

effdee said:


> Link to my blog: http://mypsct.blogspot.com/
> 
> I'm scheduled to be evaluated next week (3/7-3/9) for the transplant. I've tried and (eventually) failed Pentasa, Entocort, Sulfazine, Prednisone, Azathioprine, Remicade, Humira, Cimzia, LDN, some more of the milder 'maintenance' drugs I know I'm forgetting, and the SCD.
> 
> I'm currently on Cimzia, LDN (it's helping slightly, but not much), Amitriptyline, Aciphex (reflux), smoking (vaporizing) marijuana on and off, and sticking pretty closely to the SCD (still drinking milk). My symptoms have been up and down over the last few weeks, but I have no fewer than 8-10 bm's and up to 14 or so, usually with diarrhea and bleeding, lots of burping whenever I eat/drink or go to the bathroom, and moderate stomach pains.
> 
> I should find out whether or not I'm eligible by the 9th after I see Dr. Burt. I'll be sure to update this and, if I do the transplant, I'll make a blog (in some fashion) about it.


i was diognosed with UC when i was 12yrs old,im now 28 yrs old and in the last two yrs ive been told its now devolped into crohns and i have not been able to get it under control since,trying every drug made avalible ive been told next step is surgery but never been told about STEM CELL treatment or LDN...what is these????


----------



## effdee

Donnanne said:


> Hi effdee, i have been following your blog.
> My son is being evaluated for the stem cell transplant, nottingham, uk.
> How are you now???
> Best wishes, Donna.


Best of luck to your son. I'm hanging in there. Can't complain too much.



raechel said:


> That is so good to hear that the symptoms you are having may not even be crohn's related. Sorry it took me so long to get back on here and get your reply! I went to northwestern last week for an evaluation myself. Dr. Burt said I am a canidate! The next step is insurance approval, and then testing my siblings to see if either of the 2 of them could be a donor match. Do you have any siblings? If so were they tested?
> Also, I just wanted to let you know again how thankful I am that you have written this blog. If you hadn't I may have never found out about the trial.:ybiggrin: Also thank kyou so much for being such an open book and so willing to discuss all the details of your journey!


That's great, raechel! Glad to hear it. Hopefully your insurance doesn't take too long and approves it. I have a brother but he also has Crohn's so they didn't bother testing him. I'm happy to share all that I can. Mr. Ziggy started a great trend to follow, I think.



lollypop said:


> i was diognosed with UC when i was 12yrs old,im now 28 yrs old and in the last two yrs ive been told its now devolped into crohns and i have not been able to get it under control since,trying every drug made avalible ive been told next step is surgery but never been told about STEM CELL treatment or LDN...what is these????


My thread and blog here, as well as other links compiled by David here, http://www.crohnsforum.com/showthread.php?t=22259, should give you some good info about the stem cell transplant.

Check out the LDN section here http://www.crohnsforum.com/forumdisplay.php?f=32 for information about that. I know myself and others would be happy to answer questions you come up with if you can't find the information you need there.


----------



## effdee

Day +126. Another cold to go with still probable C. diff!

http://mypsct.blogspot.com/2011/12/day-126.html


----------



## Dexky

Hang in there Patrick!  As always, I appreciate your continued updates!  I'm glad the nausea settled but do you think stopping the anti-biotics may have contributed to this cold.  Maybe it was already lurking.


----------



## Brian'sMom

Patrick,
Have you ever taken zinc supplements? I think that helps with fighting off colds and or keeping them away altogether. Don't take it on an empty stomach though.


----------



## effdee

Dexky said:


> Hang in there Patrick!  As always, I appreciate your continued updates!  I'm glad the nausea settled but do you think stopping the anti-biotics may have contributed to this cold.  Maybe it was already lurking.


It's my pleasure! I had the sore throat before stopping the antibiotics. They don't treat colds anyway so I doubt it had much influence.



Brian'sMom said:


> Patrick,
> Have you ever taken zinc supplements? I think that helps with fighting off colds and or keeping them away altogether. Don't take it on an empty stomach though.


I haven't. I'll have to look into that. Fortunately I'm feeling a lot better already so hopefully it keeps clearing up. Not being on the immunosuppressants and being further along post-transplant seems to be making a big difference.


----------



## effdee

Day +133.

http://mypsct.blogspot.com/2012/01/day-133.html


----------



## Dexky

Sounds like a step in the right direction Patrick


----------



## xJillx

I am glad your labs look good, but I wish your symptoms matched the results.  This cdiff is being so stubborn, isn't it?!


----------



## effdee

xJillx said:


> I am glad your labs look good, but I wish your symptoms matched the results.  This cdiff is being so stubborn, isn't it?!


For something that seems quite apparent based on the symptoms, you'd like to think tests to confirm it would be simple.


Day +140.

http://mypsct.blogspot.com/2012/01/day-140.html


----------



## Dexky

Geez Patrick!  I'll be glad when your updates are all smiles and sunshine!  I feel for you man!  I guess after 10+ years of crohns, you can talk about all the nausea etc. just matter-of-fact like that but it's got to be getting old!  I hope it's not much longer!


----------



## effdee

I'd prefer not to be dealing with things like that of course, but I have a hard time feeling that upset about it. It's a minor annoyance compared to the past. It would have been a blessing if a quick trip to the ER could have taken care of any of those previous issues.


----------



## effdee

Day +147.

http://mypsct.blogspot.com/2012/01/day-147.html


----------



## Brian'sMom

Patrick,
This may seem stupid to even suggest, but once when my boys had a cold that produced a lot of mucus the GP nurse said that pineapple juice was a natural "mucus cutter". My kids and I don't really like straight pineapple juice, but you can get a blend mixed with orange juice. Also, my daughter used Mucinex once and it made her vomit. (She doesn't have crohn's,  but that pill upset her stomach). Just fyi stuff


----------



## Dexky

When is the c-scope scheduled Patrick?  Has it always been in the cards?


----------



## effdee

Brian'sMom said:


> Patrick,
> This may seem stupid to even suggest, but once when my boys had a cold that produced a lot of mucus the GP nurse said that pineapple juice was a natural "mucus cutter". My kids and I don't really like straight pineapple juice, but you can get a blend mixed with orange juice. Also, my daughter used Mucinex once and it made her vomit. (She doesn't have crohn's,  but that pill upset her stomach). Just fyi stuff


I'll probably give pineapple juice a shot. It can't hurt. I'm also considering getting a Neti Pot.



Dexky said:


> When is the c-scope scheduled Patrick?  Has it always been in the cards?


February 16th. Yeah, they've always said it will be part of each followup.


----------



## effdee

Day +155.

http://mypsct.blogspot.com/2012/01/day-155.html


----------



## Dexky

Sounds good Patrick..minus the continued nausea issues.  I'm looking forward to test results.  Thanks for your continued updates


----------



## effdee

Day +161.

http://mypsct.blogspot.com/2012/02/day-161.html


----------



## Dexky

Here's hoping there's nothing more notable to say!!

Fantastic news Patrick


----------



## effdee

Day +174, finished with the 6 month followup. 

http://mypsct.blogspot.com/2012/02/day-174-6-month-followup.html


----------



## DustyKat

What a fab outcome! It may not be the perfect one but in my mind it's pretty damn close! 

Fingers and everything else crossed that the Crohn's stays in hiding for a very looooooooong time...:goodluck:

All the very best!
Dusty. xxxxxxxx


----------



## Dexky

Pat, if the donor cells had shown up, what would the likely prognosis have been?  W/o them, your transplant is essentially the same as Ziggy's...right??  Either way, it is definitely worth it!!  Happy trails Patrick!!


----------



## raechel

Thanks for such a detailed update. I can relate to so much of what you said about the difficulties of being sick, and am so excited for you to be able to experience a "normal" life again. Your story and your optimism are inspiring.


----------



## effdee

Dexky said:


> Pat, if the donor cells had shown up, what would the likely prognosis have been?  W/o them, your transplant is essentially the same as Ziggy's...right??  Either way, it is definitely worth it!!  Happy trails Patrick!!


Again, it's impossible to say for certain. It would have been much better, though. I think that's what Dr. Burt is counting on being the missing piece at keeping it from coming back for good (or the "c" word). Mine ends up being close to Mr. Ziggy's, but an improvement. The differences being the stem cells I got were from healthy donors, and umbilical cord blood stem cells are more potent than adult stem cells, compared to having the stem cells come from an unhealthy immune system. I'm expecting to fare better than the old autulogous transplants, but I can't say how much better.


----------



## DustyKat

Variables aside, it will make for fascinating reading to see how the two of you compare over the years. 

Thank you both from the bottom of my heart for your time, honesty, selflessness and meticulous scribing! :

Dusty. :heart:


----------



## effdee

Day +190.

http://mypsct.blogspot.com/2012/03/day-190.html


----------



## DustyKat

I've been thinking about you and then you posted! Spooky! :lol: 

Thanks for update and so fab to hear all continues to go well! YAY! Sorry to hear about the ear and sinus infection though, booooo. I hope it clears up soon and you are on your winning way again! 

:mademyday:
Dusty. xxx


----------



## effdee

Day +204

http://mypsct.blogspot.com/2012/03/day-204.html


----------



## Brian'sMom

Patrick, I'll bet you're soooooo tired of antibiotics!!


----------



## Allison

Thank you for the update!  Great to hear that you're doing so well!


----------



## DustyKat

Woohoo...long may it continue! anda:anda:anda:

Onwards and Upwards! 
Dusty. xxx


----------



## effdee

Brian'sMom said:


> Patrick, I'll bet you're soooooo tired of antibiotics!!


As long as they make me healthy, I'm fine with them.


----------



## effdee

Day +212.

http://mypsct.blogspot.com/2012/03/day-212.html


----------



## DustyKat

Ugh, that sucks. I hope the antibiotics nip the infection in the bud quick smart! :goodluck:

Thinking of you, 
Dusty. xxx


----------



## Dexky

Hey Patrick, sorry I've been out of the loop for a while.  I was curious though since you believe crohns will rear its ugly head again in the future, could you be eligible to do it all over again?


----------



## effdee

Dexky said:


> Hey Patrick, sorry I've been out of the loop for a while.  I was curious though since you believe crohns will rear its ugly head again in the future, could you be eligible to do it all over again?


It's definitely a possibility. I'm assuming I'd just have to meet the same criteria as before.


----------



## effdee

Day +221.

http://mypsct.blogspot.com/2012/04/day-221.html


----------



## DustyKat

Oh man, it's one thing after another.  BUT I hope they stay as middling things and are easily treated.  

So fab to hear that GI tract is behaving itself! YAY! 

Take care, :heart: 
Dusty. xxx


----------



## effdee

Day +236.

http://mypsct.blogspot.com/2012/04/day-236.html


----------



## Dexky

Well, I remember the implications Patrick but I'm so glad you're doing well.  And the possibility of being able to do it again someday when they know more gives us all great hope.  You are one of my many chronie heroes!!


----------



## raechel

Glad to hear you are doing well!


----------



## effdee

Day +259.

http://mypsct.blogspot.com/2012/05/day-259.html


----------



## DustyKat

Thanks for the update effdee! 

It's fab to hear that you are still doing well...:hug:...hmmmm, the cord blood is certainly food for thought. 

Onwards and Upwards!
Dusty. xxx


----------



## effdee

Day +290.

http://mypsct.blogspot.com/2012/06/day-290.html


----------



## David

Thanks for the update, I'm glad you're doing great!  Yay!

I'm sure you answered this already so my apologies for missing it, but can you explain what the purpose of the growth hormone is?


----------



## Guest9283

David said:


> Thanks for the update, I'm glad you're doing great!  Yay!
> 
> I'm sure you answered this already so my apologies for missing it, but can you explain what the purpose of the growth hormone is?


Well in the purpose in checking post stem cell transplant, it's just a decent idea, just in case the chemo has altered your natural production. You naturally produce gh from your pituItary gland. So far no ones gh production has seen to be hindered by sct. Its more a general endocrine checkup. More so seen but still rare is a temporary testosterone problem post sct. Again checked in general endocrine tests.

Now as for use in crohns disease. A good doc I know named alfred slonim ran a trial years ago, and the conclusion was that growth hormone might be just as beneficial as remicade maybe in inducing remission. The problem was not that it did not work, more so there was not enough money to persue further trials needed, as gh can be very expensive. But now remicade is out and even more expensive, so how it all works knows. Same story with IVIG treatments which are probably even MORE efficient in inducing remission...but it cost $10k, and puts you in remission in 4 days!

I'm sure you heard about bodybuilders doing growth hormone too. These dosages are way above anything you would use on a theraputic level, and this yield new side effects to worry about. Smaller dosages are very safe

Sorry for babbling on ur thread


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## effdee

David said:


> Thanks for the update, I'm glad you're doing great!  Yay!
> 
> I'm sure you answered this already so my apologies for missing it, but can you explain what the purpose of the growth hormone is?


In addition to what Mr. Ziggy said, due to active disease and long term prednisone use during my teenage years I wasn't growing much. Turned out I wasn't producing the GH levels of a typical growing teenager, so I supplemented it for 2 years (grew ~4.5 inches). This recent appointment was to make sure I wouldn't need more supplementation as an adult, at least as of now.


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## effdee

Day +320.

http://mypsct.blogspot.com/2012/07/day-320.html


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## DustyKat

So fab to hear that all is going well effdee! Long may it continue! 

:mademyday: 

Dusty. xxx


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## SherryLynn

great info


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## michaelb

*Donated cells versus tailored cells*

I must have missed something in this (admittedly large) thread... 

Instead of the risking a need for lifelong immune suppression therapy,  for those who are having (or can have) still extant wisdom teeth removed anyway, why aren't these stem cell trials being designed to take advantage of techniques (such as those pioneered by Shinya Yamanaka at Kyoto University) for making pluripotent master cells  from wisdom tooth harvested progenitor cells?

- Michael

*P.S.*  Yes, I read the statement  "the _theory_ being that the less the stem cells are influenced by someone's immune system who has Crohn's, or whatever their autoimmune disease, the lower the chance of relapse will be"

It's *not a theory*!!!

This use of the term "theory" hits_ a *major* raw nerve   in my gut_. No scientist would ever make such a statement.  The scientific use of the term "theory" is diametrically opposed to it's ill-founded use by those who lack any need for a precise definition of the term.  And the phrase "_just a theory_" is an especially painful oxymoron!.

Just as scientists have done for as long as the scientific method has existed, the US National Academy of Sciences defines theory as "a comprehensive explanation of some aspect of nature *that is supported by a vast body of evidence.*  Many scientific theories are so well established that no new evidence is likely to alter them substantially. For example, no new evidence will demonstrate that the Earth does not orbit around the sun (heliocentric theory), or that living things are not made of cells (cell theory), that matter is not composed of atoms [although knowledge of what atoms are composed of continues to progress, as sub-sub-atomic-particle theory continues to be refined], or that the surface of the Earth is not divided into solid plates that have moved over geological timescales (the theory of plate tectonics)...One of the most useful properties of scientific theories is that they can be used to make predictions about natural events or phenomena that have not yet been observed."

For example, while the standard model of physics had been developed on a basis that there existed a field that had a constant strength everywhere, unlike the gravitational and electromagnetic fields, the consistency of this model required and predicted that for the model to be true,  there had to be an undiscovered fundamental particle as the counterpart of this field.  If this particle could be confirmed not to exist,  it would disprove a theory based on some very complex mathematics. A great deal of evidence would be necessary, on the other hand,  to prove the existence of the particle.  In July of 2012,  scientists at CERN announced that they now had evidence of having dislodged a particle with an energy level and other properties consistent with those that would be expected of it. And although they have not yet claimed to have found the Higgs Boson, what they have claimed is that they have found a particle that so far appears to be fully compatible with everything that theory had predicted of it.


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## effdee

Michael: I don't know why certain techniques are or aren't used for the different stem cell transplant trials. My guess is it comes down to money, lack of other resources, and the bureaucratic hoops you have to jump through to get an approved trial (if too much about the protocol is changed, I think a new trial would have to be started). For the time being, I guess they just want to get the current transplants through phase 3.

Apologies about my use of the word theory (and thanks for pointing it out). Hypothesis would have been the proper term.


Update: Day +365
http://mypsct.blogspot.com/2012/08/day-365.html


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## mreyn

I'm glad I found this thread. My son just turned 12 and has been diagnosed with crohns within the past year. His main problem (although there are many more) is vomiting. Everytime I think he's doing better it starts up again. We are so frustrated and feel so hopeless/helpless. I had wondered about stem cell transplanting before so I'm glad I found this. Any additional information I can get from Mr Ziggy and others who have been through it would be appreciated. Also, how to find a dr who will listen to you and work with many avenues like stem cell transplant to help make someone better instead of telling the entire family there is no cure, he'll never be well... Someone please help me?!


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## Ckt

Effdee..what an amazing journey you have had with sct!thank you so much for sharing the process. I had no idea this treatment even existed until I came to this site and read the blog by mr ziggy. It was a week or so before I was making a trip from ky to Chicago to see a doctor at uni of Chicago. I called dr Burt's office and they got me scheduled for preliminary Tests while there. As it turned out, I had to be admitted to northwestern with a big flare. So all the tests were done in house and I met with dr Burt. I have had several bowel resections and have failed all oral meds, remicade, and humira had lost its punch for me. After doing the mre and colonoscopy, dr Barrett and dr Barrett alkng with dr burt decided to start me on combo therapy of humira,methotrexate and prednisone. I am still registered with dr Burt and have to get past path and op reports from a few of my recent resections. So I'm up in the air about it right now. It's exciting though that this could be an option for me! I,too, was very impressed with both the gi and immunology teams. I felt they were exhaustively detailed in their assessment of me and included me in on all decisions pertaining to my crohns. It's a switch as recently here in ky,I have felt talked down to and not taken seriously at all. 
I'm hopingthe combo therapy helps and dr Burt said methotrexate ups the efficacy of humira by 30% but to be honest, it's kicking my ass!the few days after doing the injections I'm completely wiped out and find it hard to do anything at all. I'm hoping my body acclimates tothe methotrexate as it has also caused flu like symptoms with a transient fever on the day of injection.
Won't it be fantastic if this treatment of sct takes away crohns?i feel truly it is the future for the goal of complete remission at the least and cure at the best! 
I really appreciated dr Burt keeping me active in his patient list for the potential in the near future. I know it has grave risks.but I honestly wonder if its any worse than taking the meds most of us have to take?none of them are benign and have their own risks!
I am also reading your complete blog from the thread that you referenced.i know you did this obviously for yourself..sct that is..but sharing your experience so helps those of us who are looking at it!thank you thank you!!and may you stay healthy and strong!:hug:


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## effdee

Thank you for the kind words! I'm glad the blog has been helpful for you. Methotrexate was a pretty miserable experience for me. It did help with Humira, but the side effects might have made it so it wasn't any better overall. I'm hoping it works better for you, or you learn that it won't and can move forward in pursuit of a stem cell transplant. Definitely let us know how things progress for you. If you ever want to get in touch with me, feel free to shoot me a PM. Always happy to talk about it here, over email, Facebook, texting/phone, whatever. Take care!


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## effdee

Day +445. All is going well! 

http://mypsct.blogspot.com/2012/11/day-445.html


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## ctrl z

Thanks for the update. 

I wonder how fast it would have taken your new immune system to crush the sinus infection instead of using antibiotics? Is this part of the protocol to treat everything with pharmaceuticals as it happens for a while or is it just something you opted to do?


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## effdee

My guess would have been much longer than I would have liked. It was my first time being sick in a while, but the colds I did get took noticeably longer to go away than I was used to. Midterms were coming up so I much preferred to get it taken care of as quickly as possible so going to class and focusing on studying was easier. If I had nothing going on, I may have considered just riding it out. The transplant doesn't have any direct bearing on using antibiotics - I just see my doctor and get treated basically as usual. My word seems to be worth a bit more, though, once a doctor sees the discharge summary, especially if they aren't terribly familiar with the process.


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## DustyKat

Thanks for the update effdee!  

It is so fab to read that all is going well. I am so happy for you and am hoping that the good times just keep going on and on and on! 

:mademyday:
Dusty. xxx


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## effdee

I still feel great. Needless to say, I'm excited to see what all the testing shows!

Day +489

http://mypsct.blogspot.com/2012/12/day-489.html


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## DustyKat

Hi effdee! 

I hope you had a lovely Christmas.  

So good to hear you feeling well and sending loads of luck and well wishes that the tests all come back NORMAL! Who ever thought that before Crohn's normal and boring would be such wonderful words! :lol: 

I will be thinking of you and keeping my fingers, toes and everything crossed that the test results match with how you are feeling.  

Good luck!!!

Dusty. :heart:


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## sunflower

Hi Patrick, just checking in on you again.  I am so glad things are going well for you.  I hope things continue that way.  Silly me!  I just noticed today that your last name is my maiden name, except we use a capital M.  I guess I read your updates, but didn't look at your last name on it.  

Here is to a Happy new Year!


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## effdee

Back from my 1 year followup at ~16 months. All good news!

http://mypsct.blogspot.com/2013/01/day-507-1-year-followup.html


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## David

Congratulations on the continuing good news.  I'm really happy for you


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## effdee

Day +534.

http://mypsct.blogspot.com/2013/02/day-534.html


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## Brian'sMom

Patrick, I just read an article about bone marrow transplants replacing the immune system with a new one and curing crohns. Is this the same thing as stem cell transplant?


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## JJOM

Patrick, I am so happy that things are going well for you. 

Greta to read that you can put the scopes off for the foreseeable future! :thumleft:

JJOM


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## raechel

Brian'smom- It is my understanding that they are essentially the same thing. The difference is that in a bone marrow transplant, the stem cells are collected from the bone marrow. In a stem cell transplant the cells are collected from circulating blood. This link describes this more in depth:

http://www.cancer.gov/cancertopics/factsheet/Therapy/bone-marrow-transplant

I hope this helps!
Raechel


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## effdee

Had my 2 year followup last week. Everything is good.  Apologies if I'm updating too infrequently but, with nothing really going wrong and staying busy otherwise, I tend to put it off quite a bit.

http://mypsct.blogspot.com/2013/06/day-664-2-year-followup.html


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## Dexky

Just pop on here and smile every once in a while!

Great to hear Patrick!


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## DustyKat

2 years! :yfaint: 

Where did that time go. Do you know how wonderful it is to read that everything is going so well that you basically have nothing to say? Well it's bloody brilliant! 

Onwards and Upwards effdee! 

Dusty. :heart:


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## Brian'sMom

Patrick!!! You're our hope!   SOOOOO HAPPY FOR YOU!!


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## JJOM

Great news Patrick...


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## effdee

Day +730... Hard to believe it was 2 whole years ago this morning that I was getting the stem cell infusion. I still have a hard time really putting it all into words, and I don't think I'll _ever_ be able to properly thank Dr. Burt and company. 

I may write a blog post later tonight after I'm done spending time with friends, but there's really nothing new to report. Just wanted to pop in while I'm reflecting and say thanks for all of the support from everyone. I'm finding I care more about this birthday than my "real" one (maybe because I already turned 21). Having all of this to look back on is...


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## effdee

+2 Years, 3 Months, 1 Day

http://mypsct.blogspot.com/2013/11/2-years-3-months-1-day.html


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## Clash

So glad to hear things continue to go well! Thanks so much for the updates!


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## Brian'sMom

What is the age limit for this procedure? Do you happen to know when it will be considered treatment and not a trial?


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## Cat-a-Tonic

I also have issues with acid reflux particularly when weightlifting (or any type of strenuous exercise that involves the abdominal muscles).  It seems to be a separate issue from IBD, at least for me.  My IBD was in remission for 2 years and my acid reflux steadily got worse during that time.  My GI told me that if it gets too bad, to try something like jogging/biking that isn't putting as much pressure on the abdominal muscles.  For now, though, I lift weights and just take a bunch of antacids beforehand.

Glad to hear you're still symptom-free other than the reflux though!  That's fantastic and you've given a lot of hope to everyone who reads your blog.


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## effdee

The age limit, as far as I know, would be 18 because it's not a pediatric trial. I believe Dr. Burt is going to begin pediatric transplants once the Northwestern Children's hospital is built. No idea when that will be, though.

Here's what Dr. Burt's nurse told me when I asked about the transplants becoming approved treatments:

"I am not really sure what it takes for the trials to become approved treatments. I’m guessing lots of publications. Dr. Burt has been working with MS patients for a long time, and other people around the world are now doing transplants for MS, and it still is not approved for standard therapy. There is not a ballpark number of patients. Just lots of time and publications."


Another brief update: http://mypsct.blogspot.dk/2014/01/2-years-4-months-19-days.html

And I got my blog I will use while I'm studying abroad going: http://iseverythingtakenalready.wordpress.com/

Thanks to everyone! I appreciate the support!


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## Tesscorm

So glad you're continuing to do well!!   Have a great time while abroad - I'll be watching for your updates!


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## Brian'sMom

Your blog has the picture from the beginning.Any new pictures of yourself? I'd love to see your healthy self!


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## Allison

Wow, so thrilled to read your new blog and learn that you get to study abroad!  What a wonderful blessing!!!  

(I love the name you chose for the blog too -- very clever!   )

I agree w/Brian'sMom -- we want to see a recent picture!


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## JustAMom

Just wanted to say thanks for posting your stem cell journey. Your story as well as Mr. Ziggy's posts helped us find our way to Dr. Burt. My Patrick just completed his transplant. He's at +22 today


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## effdee

3 years. 

http://mypsct.blogspot.com/2014/08/year-3.html


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## JustAMom

Hurrah for the great news! My son had his 6 month post transplant follow up in July. Dr. Burt was thrilled with his progress. Patrick has gained 30 pounds, put on muscle and feels great. Colonoscopy was normal with biopsies showing slight inflammation at the cellular level. Considering how sick he's been for the last 10 years, this is a miraculous recovery. 

Thanks for posting your update. Your good news gives many hope for better days ahead!


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## effdee

Awesome to hear! If he was still severely flaring at the time of the transplant, I'd imagine the stem cells still have some work to do and he'll continue to improve further. Fingers crossed for him!


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## effdee

4 years. 

http://mypsct.blogspot.com/2015/08/year-4.html


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## 24601

Great to hear you're still doing so well! :dusty:


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## David

Wow!  Thank you so much for the update.  It's amazing how fast time has gone by.  I'm so happy you're still symptom and medication free.  Truly wonderful!


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## JustAMom

Thanks for the update Patrick!  Your posts bring hope to those considering stem cell! You led us to Dr. Burt for which we are deeply grateful. 

My Patrick is at 19 months post transplant. His health has continued to improve and he is symptom free. Each and every time we see him living a normal life, hubby and I smile and thank Dr. Burt and the transplant team. It took 2 years to get accepted for the transplant but so worth it! 

Many thanks to all who have been part of this study and to those who blog about it to raise awareness!


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## David

JustAMom, that's wonderful that your son is doing well too!  Fantastic news


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## Max's Mom

effdee,I was just wondering if you know when this treatment will be available for everybody


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## effdee

Max's Mom, I can't say with any real certainty, unfortunately. I have a cynical view on the matter because our current overlord drug manufacturers stand to lose money if this is available to everyone, and we know that's what really matters (think about the cost of a few decades on Humira compared to a stem cell transplant). I would be surprised if it was an approved treatment within 5 or 10 years. There's still data that needs to be collected and, from what I can tell, they don't always have a lot of Crohn's patients. Thanks for the question.


For a quick general update, I'm still doing fine. I have my 5 year followup scheduled for August, and I'll pop in for another update after that.


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## effdee

5+ years and still doing fine. Hard to believe it's been this long already. 

http://mypsct.blogspot.com/2016/11/5-year-followup.html


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## Seuxin

Hello,

Glad your are ok !
But i don't understand a thing...why only a few people use stem cell therapye for crohn ? It's not agreed ? It's dangerous ? When a stem cell cure for crohn will be available ?
How the stem cell cure for crohn function ?

Thanks a lot !


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## asadmom

Checking in from year 2022 - How are you doing?

More specifically, are you on ANY medication for Crohn's? Or... that's really a thing in the past?


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## asadmom

Oh no! https://www.the-scientist.com/news-...em-cell-therapy-clinic-closes-abruptly--66401

The research has been shut down?


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## Kannassee

asadmom said:


> Oh no! https://www.the-scientist.com/news-...em-cell-therapy-clinic-closes-abruptly--66401
> 
> The research has been shut down?


If a cure for Crohns is found it would be a disaster fo all those Big Pharma companies.....Biologics are a cash cow for them.....the cost of biologics is frankly .......obscene???


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## asadmom

Kannassee said:


> If a cure for Crohns is found it would be a disaster fo all those Big Pharma companies.....Biologics are a cash cow for them.....the cost of biologics is frankly .......obscene???











						Federal Trade Commission Withdraws Remaining Case against AbbVie after Supreme Court Decision Strips Consumers of Relief
					

After the Supreme Court declined to review a ruling from the Third Circuit that AbbVie used sham litigation to illegally maintain a monopoly, the Federal Trade Commission has withdrawn the remainin




					www.ftc.gov
				












						How Abbvie blocked competition with patents and acquisitions to protect its sales
					

This is increasingly how the pharma industry works.




					www.axios.com


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## asadmom

Kannassee said:


> If a cure for Crohns is found it would be a disaster fo all those Big Pharma companies.....Biologics are a cash cow for them.....the cost of biologics is frankly .......obscene???


This "shut down" is incredibly sad and disappointing. I am sure there are people out there suffering and stem cell is one other hope and it's taken away from them. Don't know where Dr. Burt is at right now but I pray he surfaces again and continues to help people.


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## Kannassee

asadmom said:


> Federal Trade Commission Withdraws Remaining Case against AbbVie after Supreme Court Decision Strips Consumers of Relief
> 
> 
> After the Supreme Court declined to review a ruling from the Third Circuit that AbbVie used sham litigation to illegally maintain a monopoly, the Federal Trade Commission has withdrawn the remainin
> 
> 
> 
> 
> www.ftc.gov
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> How Abbvie blocked competition with patents and acquisitions to protect its sales
> 
> 
> This is increasingly how the pharma industry works.
> 
> 
> 
> 
> www.axios.com


There you go!!!!


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