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Crohn's Disease Forum » Treatment » My Stem Cell Transplant Blog


 
03-19-2013, 10:37 AM   #301
raechel
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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/f...row-transplant

I hope this helps!
Raechel
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Diagnosed 2007, 1 resection in dec 2010 (12 inches of illeum and cecum), several abcesses.

Meds I've tried:Stelara, Pentasa, Entocort, Prednisone (over and over again) Remicade, Humira, Flagyl, 6MP, Imuran, Methotrexate.. I'm sure there's more I can't think of...
06-20-2013, 06:07 PM   #302
effdee
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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/d...-followup.html
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Stem Cell Transplant Blog
06-20-2013, 06:37 PM   #303
Dexky
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Just pop on here and smile every once in a while!

Great to hear Patrick!
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Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
06-20-2013, 07:10 PM   #304
DustyKat
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2 years!

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.
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06-20-2013, 08:20 PM   #305
Brian'sMom
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Patrick!!! You're our hope! SOOOOO HAPPY FOR YOU!!
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
06-21-2013, 01:19 AM   #306
JJOM
 
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Great news Patrick...
08-26-2013, 04:11 PM   #307
effdee
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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...

11-27-2013, 11:08 PM   #308
effdee
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+2 Years, 3 Months, 1 Day

http://mypsct.blogspot.com/2013/11/2...ths-1-day.html

11-27-2013, 11:12 PM   #309
Clash
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So glad to hear things continue to go well! Thanks so much for the updates!
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Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
12-01-2013, 11:46 PM   #310
Brian'sMom
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What is the age limit for this procedure? Do you happen to know when it will be considered treatment and not a trial?
12-02-2013, 02:31 PM   #311
Cat-a-Tonic
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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.
01-15-2014, 07:55 PM   #312
effdee
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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. Iím 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-...s-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!
01-15-2014, 11:04 PM   #313
Tesscorm
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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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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
01-18-2014, 12:28 AM   #314
Brian'sMom
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Your blog has the picture from the beginning.Any new pictures of yourself? I'd love to see your healthy self!
01-18-2014, 10:09 AM   #315
Allison
 
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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!
02-15-2014, 06:55 PM   #316
JustAMom
 
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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
08-26-2014, 12:20 PM   #317
effdee
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3 years.

http://mypsct.blogspot.com/2014/08/year-3.html
08-26-2014, 09:16 PM   #318
JustAMom
 
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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!
08-27-2014, 12:56 AM   #319
effdee
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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!
08-26-2015, 08:46 PM   #320
effdee
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4 years.

http://mypsct.blogspot.com/2015/08/year-4.html
08-27-2015, 09:40 AM   #321
24601
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Great to hear you're still doing so well!
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Stricturing jejunoileitis dx 1996 aged 17
Current treatment: stem cell transplant
Previous treatment: Humira + methotrexate
Past treatments: prednisolone, azathioprine, budesonide, pentasa, EEN (oral and NG), elimination diet, SCD, whipworms, 6mp, Remicade, anti-MAP antibiotic therapy
Surgeries: small bowel resection and strictureplasties in 2001, 2005, 2009, 2014
08-28-2015, 09:29 AM   #322
David
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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!
09-05-2015, 12:34 PM   #323
JustAMom
 
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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!
09-06-2015, 11:07 AM   #324
David
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JustAMom, that's wonderful that your son is doing well too! Fantastic news
01-24-2016, 01:11 AM   #325
Max's Mom
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effdee,I was just wondering if you know when this treatment will be available for everybody
07-05-2016, 11:24 AM   #326
effdee
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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.
11-22-2016, 06:58 PM   #327
effdee
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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
11-23-2016, 02:06 PM   #328
Seuxin
 
Join Date: Mar 2015
Location: Reims, France
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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