• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

My Stem Cell Transplant Blog

DustyKat

DustyKat

Super Moderator
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:
 
E

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...

:)
 
Cat-a-Tonic

Cat-a-Tonic

Super Moderator
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. :)
 
E

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!
 
Tesscorm

Tesscorm

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

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! :D )

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

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
 
J

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!
 
E

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! :)
 
David

David

Co-Founder
Location
Naples, Florida
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!
 
J

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!
 
E

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.
 
S

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 !
 
A

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?
 
A

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???
Click to expand...
www.ftc.gov

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 www.ftc.gov

www.axios.com

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

This is increasingly how the pharma industry works.
www.axios.com www.axios.com
 
A

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???
Click to expand...
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.
 
K

Kannassee

asadmom said:
www.ftc.gov

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 www.ftc.gov

www.axios.com

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

This is increasingly how the pharma industry works.
www.axios.com www.axios.com
Click to expand...
There you go!!!!
 
You must log in or register to reply here.
Top