Share Facebook
Crohn's Disease Forum » Treatment » Stem cell transplant journey beginning


View Poll Results: I would like to see how many people read this thread and find it useful?
Read and found useful information 27 100.00%
Read and did not find what I was looking for 0 0%
Voters: 27. You may not vote on this poll

 
09-12-2012, 02:55 AM   #61
NotYetFitEnuf
 
Join Date: Aug 2012
Location: Bookham, United Kingdom
Good luck. Can't believe what some people have to go through with this disease
09-16-2012, 04:23 PM   #62
chrisnsteph1022
Senior Member
 
chrisnsteph1022's Avatar
 
Join Date: Jan 2011
Location: Tennessee

My Support Groups:
Any updates?? I hope you're doing well.
__________________
Stephanie
dx 2003
Remission 2004-2010
Moderate/severe flare through entire colon 12/2010-10/2012
Lialda, omeprazole, Remicade, Methotrexate, Folic Acid, Questran
Been on Asacol, prednisone, Apriso, Imuran, Entocort and Cimzia
FB support group
09-18-2012, 05:49 AM   #63
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
I am so sorry I haven't updated recently. Ever since the day before my transplant day, I was feeling so weak and nauseas and in a good bit of abdominal pain. The pain meds I had been getting were making me worse. So when I realized that, I had them take me off everything but Norco which helps a lot more.

The day before my transfusion, I started getting these bad abdominal cramps and I'd sit on the toilet for forever in writhing pain and nothing would come out. This has continued. They gave me a laxative for the first time the other day. And now, while its still sooo very painful, it's regulating to once or twice a day. The nausea is getting much better and I'm able to sleep again.

Day 0: September 13, 2012 10:18am I had my 2nd birthday. They brought the cells in Luke something from a movie, steam and all lol they blessed the cells (my choice) and started the infusion. They came in a small bag that looked like blood. The second they went in I tasted creamed corn, started breathing heavy and started vomiting through the entire thing. But Dr Burt was in the room with me and in 30min it was all done. I was pretty suck for the next two days but I'm gradually getting better.

It's now Day 5 and I'm full of energy with the occasional pain and nausea and a few other issues...needed 2 blood transfusions, one platelet transfusion, a couple bad fevers, and I have a lot of blood in my urine. So they're monitoring me and as soon as my counts go up, I go home!! Yay!! Just be praying this really works and I'm gonna be better than I can remember being!
__________________
Jenn
Crohn's Colitis

Previous meds: Asacol, Colosal, Pentasa, Imuran, Remicade, Humira, Methatrexate, Folic Acid, Iron supplements, probiotics, prednisone, cipro, flagyll, aciphex, vancomycin, lortab, compazine, rowasa, , cimzia, Percocet, phenergan, lomotil, dilaudid, zofranTPN, blood transfusion, no surgeries yet

[COLOR="DarkOrchid"]Current meds: tons of transplant and anxiety and migraine meds

Undergoing stem cell transplant
09-18-2012, 05:55 AM   #64
raechel
Senior Member
 
raechel's Avatar
 
Join Date: Jun 2011
Location: Michigan

My Support Groups:
Wow, Jenn, sounds brutal :-( You are one tough cookie! Emma and I are keeping you in our prayers!
__________________
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...
09-18-2012, 06:27 AM   #65
AuntieEm
Senior Member
 
Join Date: Sep 2012
Location: Lebo, Kansas

My Support Groups:
Intensely following your progress.
09-18-2012, 06:40 AM   #66
Moe.
Senior Member
 
Join Date: Aug 2012
Location: sydney, New South Wales, Australia
Good luck. Hope all goes well.
09-18-2012, 07:13 AM   #67
Clash
Forum Monitor
 
Clash's Avatar
Good luck!!! I hope you are home real soon!!!
__________________
Clash
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
09-21-2012, 11:41 PM   #68
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
My memory loss is getting a little better. But I was getting to the point I couldn't remember my own name or where I was or what we were talking about. Very scary. And now my hairs starting to come out
09-21-2012, 11:47 PM   #69
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
Please ready blog for info I just couldn't get in both places. Sooo tired! Let me known if it doesn't work!! Thanks for understanding!

www.lifeofacrohnie.blogspot.com
09-22-2012, 02:59 AM   #70
Lawyerboy
 
Lawyerboy's Avatar
 
Join Date: Aug 2012
Location: Amsterdam, Netherlands
From what I understand after reading a lot of medical research on stem cell transplants I understand that it is supposed to be really tough; so hang in there and you will be alright. Best of luck!
09-22-2012, 04:17 AM   #71
AuntieEm
Senior Member
 
Join Date: Sep 2012
Location: Lebo, Kansas

My Support Groups:
We are pullin right along with you!!
09-22-2012, 09:59 AM   #72
Gwen pippy
Senior Member
 
Join Date: May 2011
Location: Ireland
Keep strong honey. xxx
09-22-2012, 11:25 PM   #73
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
I shaved my hair off today. It wasn't as emotional as I anticipated. I'm coping well. The pain has been better today. Lots of diarrhea last night with soooo much pain but today has been much more manageable. They switched my picc line because they suspected an infection in it. They're doing stool tests now for more research as to where this infection is coming from. I'm on tons of antibiotics still that will cover all areas of my body. I'm taking two neupogen shots a day to increase my white blood cells.

The doctor says I'm doing really well an they expect discharge this week. My appetite is still crummy but I get like that in hospitals. I eat better at home. But my Crohns symptoms seem better. I feel like I'm feeling more of the transplant side effects right now. But time will tell !
09-22-2012, 11:37 PM   #74
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
See my blog for pictures!! Lifeofacrohnie.blogspot.com
09-23-2012, 02:39 PM   #75
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
My counts are finally going up and I should be going home soon! I feel better and I've already eaten twice today!!! Yay!!! Dr Burt said everything looks good and when he pressed on my belly...no pain!!! I'm still weak as can be expected but I do see a difference already. Praying this continues to get better!

Also I haven't used the bathroom in the last day but when I try only blood comes out, Dr Burt says its common in Crohns patients of his. It's almost like the body is expulsing the disease from my body! Praying thats true!
09-23-2012, 03:11 PM   #76
KWalker
Moderator
 
KWalker's Avatar
The pictures don't seem to be showing up for me. I'm so glad you seem to be on the road to recovery and continue to progress.
09-26-2012, 01:48 AM   #77
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
Well I was hoping to go home today but I'm not quite there yet. We will see about tomorrow. My platelets are right where they need to be to go home but they want to be sure they're continuing to rise before sending me home. Plus my white cell counts are at 0.8 and they need to be at 1.0. I'm taking neupogen shots still so they should be up in the next couple of days.

I've barely had any nausea or pain. I'm only using the bathroom a couple times a day. It's loose but they said its most likely because of all the anti rejection and anti viral meds. I feel good. I'm just exhausted. My body has been put through the ringer and I'm feeling it. I think once I'm home with my family in my own house and in my own bed, I'm going to feel amazing!

Amy, Dr Burt's nurse, just discussed my discharge instructions with me which is exciting because it means I'm almost done and I've made it through!

On a different note, my blog was featured on Healthline.com's Top 11 Crohns Blogs of 2012! How exciting!! They specifically mentioned my positive outlook despite my condition and that seriously brought tears to my eyes. I knew I was going through this for a higher purpose of reaching others and that confirmed it for me! That made all of my struggles worth it because someone is reading and someone is getting something from it. God is so good!
09-27-2012, 05:46 AM   #78
AuntieEm
Senior Member
 
Join Date: Sep 2012
Location: Lebo, Kansas

My Support Groups:
Thinking about you today. Hoping your counts are still climbing!
09-27-2012, 01:32 PM   #79
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
Unfortunately my counts dropped slightly so I'm here another day but dr burt is allowing me to go to the cafeteria in the hospital to help with my cabin fever. That's nice
09-27-2012, 06:16 PM   #80
AuntieEm
Senior Member
 
Join Date: Sep 2012
Location: Lebo, Kansas

My Support Groups:
Hurahhh! out of the four walls! I know you'll be ready for real fresh air when you do finally get to leave. *lifting a protien drink to toast higher counts tomorrow*

Auntie em
09-30-2012, 05:56 PM   #81
AuntieEm
Senior Member
 
Join Date: Sep 2012
Location: Lebo, Kansas

My Support Groups:
Hopefully you've gotten to go home.
Prayers are with you on your continued journey.

Auntie Em
09-30-2012, 06:18 PM   #82
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
Thank you! I will be posting an update tonight!
09-30-2012, 08:33 PM   #83
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
Ok everyone! Sorry for the delay!! I got home around midnight Friday and I've been battling bad insomnia, ton of pain, and really high blood pressure with blurry vision and dizziness. Not a good weekend. I talked to Dr Burt today and he said the pain should gradually fade with time and to get my weekly bloodwork as normal starting tomorrow morning and we will go from there. I'm pretty sure I'm going to need blood pressure meds since the cyclosporine (anti rejection meds) causes high blood pressure and I can't keep living like this everyday.

Other than that I'm now only using the bathroom a few times a day, which should lessen with time as well. No nausea. No vomiting after every meal. I have a good appetite. No fevers. No bleeding.

Last edited by jmcbrid2; 10-01-2012 at 03:16 PM.
09-30-2012, 09:29 PM   #84
AuntieEm
Senior Member
 
Join Date: Sep 2012
Location: Lebo, Kansas

My Support Groups:
Welcome Home!!


*happy dance*
10-01-2012, 03:23 PM   #85
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
My blood pressure is staying high. It's made me so dizzy and my visions so blurry that I've been throwing up. Dr Burt prescribed me something for my blood pressure. It hasn't kicked in yet or I threw up too close to taking it but really hoping to feel better soon.
10-02-2012, 06:06 AM   #86
AuntieEm
Senior Member
 
Join Date: Sep 2012
Location: Lebo, Kansas

My Support Groups:
Sometimes it takes a few tries to get BP meds just right. Hang tight.

Auntie Em
10-02-2012, 06:13 PM   #87
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
My heart rate has been high all day and I'm shaky, like jittery. So I called Dr Burt. He's changed my dose of cyclosporine, asked me to cut down on phenergan, and made my blood pressure meds to as needed if my blood pressure is high. Also my magnesium is low so my dose of magnesium oxide has increased. Pain is still bad. It's like a constant sharp pain. The Percocet reduces it but doesn't eliminate it. But atleast my other Crohn's symptoms are better!
10-02-2012, 06:30 PM   #88
AuntieEm
Senior Member
 
Join Date: Sep 2012
Location: Lebo, Kansas

My Support Groups:
Do you think any of the heart rate/shaky/jiggery is anxiety? You have been through so much. I take it the sharp pain is abdominal. I guess until the areas heal over they will have pain.(?) Have they given you any indication on how that may go? I'm glad the other symptoms are subsiding. It will make daily functioning so much easier once you are stronger.


Prayers continue,
Auntie Em
10-02-2012, 07:05 PM   #89
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
I don't think it's anxiety especially since I'm on meds for that too lol. As for the pain, it is abdominal pain and they're hoping it'll fade in the next week but I honestly don't see that happening
10-02-2012, 07:17 PM   #90
Guest9283
Senior Member
 
Join Date: May 2010
Sometimes you can have continious pain after the transplant for a couple reasons. The chemo does strip the lining of your insides. It takes approx 6 week to grow a new mucosal lining. It is at that point that you should start to feel like things might be improving slowly. You must remember - the transplant has now killed your crohns (theoretically), but your inflamation still needs to come down and heal. Week 5 for me I started turning around. However i also opted to do TPN for a continued 6 weeks post transplant to let my tummy rest while it recovered. So week 6 - 8 typically while eating solids.

Good luck!
Reply

Crohn's Disease Forum » Treatment » Stem cell transplant journey beginning
Thread Tools


All times are GMT -5. The time now is 12:44 AM.
Copyright 2006-2017 Crohnsforum.com