Share Facebook
Crohn's Disease Forum » Treatment » My stem cell transplant


 
11-19-2010, 12:51 PM   #1
adrian mcdonnell
 
Join Date: Jan 2010
Location: derby, United Kingdom
My stem cell transplant

Hi Everyone,
I have just started the pre-tests to start the Stem cell transplant. Yesterday I had a Dexa scan, lung function test and dental scan and then they took lots and lots of blood for various tests. That night I stayed in the hospital hotel at Nottingham City for an early start in the morning for (you guessed it)... more test, which were a barium follow through so they can look at my bowel and take X-rays whilst the barium goes from one end to the other and then after that i had a Cardiac Echo, thankfully all were painless and the nurse who took me around the hospital for the tests was lovely and making me feel more at ease.

Next week I have an appointment for a Colonoscopy and an Endoscopy then hopefully if all is well I will start the mobilization stage the week after next.

Hope everyone is well and i will keep you informed of my progress.
11-19-2010, 01:10 PM   #2
Nica
Senior Member
 
Nica's Avatar
 
Join Date: Nov 2010
Good Luck with your stem cell transplant. I will be watching for your posts as I think I will eventually be heading that route.
__________________
Cheers!
Nica
Med list!
Humira, Percoset, Phenegren, Ambien,Zoloft (trying cymbalta after the new year)
Old Med List!
Pred, Asacol, Remicade, Methotrexate,immuran, Pentasa,Entocort, lomotil, more antibiotics than I can count, gut muscle relaxers, tramadol!
Would love to have Crohnies meet me on
Facebook! please put CF or Crohnie so I know who you are in requests! http://www.facebook.com/profile.php?id=686580310
11-19-2010, 10:52 PM   #3
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Wow adrian! I hope all goes well with the tests. I look forward to reading your updates and I wish you all the luck in the world with your transplant...........



Take care,
Dusty
__________________
Mum of 2 kids with Crohn's.
11-20-2010, 05:03 PM   #4
kildare crohnie
Member
 
kildare crohnie's Avatar
 
Join Date: Oct 2010
fair play to u man...get rid of this sxxt once and 4 alll...
11-21-2010, 01:44 AM   #5
lynx
Senior Member
 
Join Date: Oct 2010
I second what Kildare said...godspeed!
__________________
Symptomatic since at least '99
Original Dxd '06 with UC
Dxd '10 with CD

Currently taking:
Delzicol ( the latest bs non generic form of mesalamine because I live in the U.S.)

previously taking:
a bunch of stuff.

"Research is what I'm doing when I don't know what I'm doing."
Wernher Von Braun
11-21-2010, 07:25 PM   #6
fateful_one
Senior Member
 
Join Date: Mar 2009
Location: 60115, Illinois
please give us all an update ever once and awhile. i'd love to hear about! i have heard great things; best of luck!
__________________
In complete remission!!!!
1 Resection 12/2010[/FONT]
12-24-2010, 01:50 PM   #7
adrian mcdonnell
 
Join Date: Jan 2010
Location: derby, United Kingdom
Thank you for all your support i really appreciate it.

I have had my colonoscopy and endoscopy and the results are fine, unfortunatly my hickmen lining insertion has been postponed until Jan 7th. Then i will have to go back the following Wednesday to start the first lot of chemo. To be honest i can't wait because at the moment i am suffering with serious pain and vomiting. Trying to stay positive, i will keep you posted.
12-25-2010, 09:57 PM   #8
bry33
Member
 
bry33's Avatar
 
Join Date: Dec 2010

My Support Groups:
keep up the good work i wish that is an option in the US it would make a lot of things easier for everyone stay positive the result will be life changing
__________________
Boyfriend, "did you fart?" me-"yup" boyfriend, "*laughs* Baby that's awesome!" haha love him almost 2 years!!!
Diagnosed when i was 7 I'm 18 now
i've tried, pentasa, flagil, 6-mp, remicade, asacol, ennemas, prednizone, humira, daily mineral oils, liquid diets and many others that i can't remember
I've been on Cimzia since August 400mg
Lamotragine getting up to 200mg
ambien 10mg
12-26-2010, 03:00 AM   #9
Entchen
Chief Dandelion Picker
 
Entchen's Avatar
 
Join Date: Mar 2010
All the best to you, Adrian!
__________________
Dx: Moderate Crohn's in 3 locations
Doctor's orders: 200 mg Imuran
Have used: 4500 mg Pentasa, 4500 mg Salofalk, Flagyl, Cipro, 50 mg Prednisone, 9 mg Entocort.
Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon
12-26-2010, 08:23 AM   #10
lynx
Senior Member
 
Join Date: Oct 2010
hey BRY33 ....it is an option in the US ...here is a full post about the procedure from Ziggy and it was actually done in Chicago!
http://www.crohnsforum.com/showthrea...ighlight=ziggy
12-27-2010, 08:15 PM   #11
bry33
Member
 
bry33's Avatar
 
Join Date: Dec 2010

My Support Groups:
oh wow thank you lynx...the real question is how sick do you have to be to get this treatment lol
01-11-2011, 06:38 PM   #12
adrian mcdonnell
 
Join Date: Jan 2010
Location: derby, United Kingdom
The criteria for getting on the trial is that you must have tried all drugs that are available without any success or side effects and had Crohn's for a minimum of 5 years.

I have had my Hickmen Insertion and tomorrow i will have my first high dose of Chemo. I have requested that i would like some anti nausea medication if possible which the nurse agreed too. I will have 2 high doses of Chemo and some other drugs of the next 10 days and then i will be put on a Stem Cell Recovery machine to take my cells and freeze them.

Feeling a little anxious but i am feeling very positive about the outcome as i have heard of some fantastic results. Have purchased lots of fantasy novels to read and a usb dongle so i can connect to the internet whilst in hospital so i can keep you all updated with my progress.
01-11-2011, 06:50 PM   #13
Nytefyre
Senior Member
 
Nytefyre's Avatar
 
Join Date: Jul 2009
Location: Georgia
Good luck! I hope the meds work and the nausea is not too bad! Can't wait to read the updates!
__________________
When bankers get together they talk about art. When artists get together, they talk about money.
~Oscar Wilde

Who, being loved, is poor?
~Oscar Wilde
01-11-2011, 08:25 PM   #14
Ian
Senior Member
 
Ian's Avatar
 
Join Date: Feb 2010
Location: London, UK
Good luck Adrian, really hope it goes well for you!

Don't ask me why because I'm currently having lots of success with medication, but I find it reassuring that this treatment is available not just in the UK but so close to where I live! (assuming there's no red tape around being treated at a different hospital etc). I was diagnosed just over 5 years ago and have never had any adverse reactions to drugs, so if medication ever stops working for me I guess I'd be a potential candidate? Although hopefully if/when that happens it will be a long while from now and this treatment will be widely available anyway, like the once new and experimental 'Remicade' is now

Do you have to have tried surgery first to be eligible?

After reading Ziggy's amazing story I'm really excited to hear this is happening just a couple of counties away from me! Sounds like a real breakthrough. Best of luck!
__________________
Dx Ulcerative Colitis Oct 2005 (age 19)
Dx Crohn's Colitis Feb 2010 (age 23)
Dx Indeterminate Colitis (IBD unclassified) Oct 2011 (age 25)
Dx likely Ulcerative Colitis July 2013 (age 27)

Currently taking:
6MP (75mg daily)
Asacol (3 x 800mg, twice daily)

Have taken: Humira, Infliximab (Remicade), Prednisolone, Predfoam
01-11-2011, 10:01 PM   #15
Entchen
Chief Dandelion Picker
 
Entchen's Avatar
 
Join Date: Mar 2010
Hoping for a smooth process and amazing outcome for you, Adrian!
01-12-2011, 10:53 AM   #16
Sue-2009
Senior Member
 
Join Date: Nov 2009
Location: Michigan
Yeah! Keeping fingers crossed for you....Good luck...Thank you & everyone doing the stem cell thing...It gives me hope & strength to grab on to! SUe
__________________
Current Meds: Humira, Mercaptorine, Allopurinol, vitamins
01-15-2011, 03:32 AM   #17
adrian mcdonnell
 
Join Date: Jan 2010
Location: derby, United Kingdom
Hi Everyone,
I am now on my second day of Chemo and Mezna, since i arrived i have been constantly hooked up to 2 drips ( 1 for Chemo and 1 for Mezna and fluids). First day was not to bad just a lack of sleep due to constantly going to the toilet because of the fluids, averaging every 30 mins. Second day not so good, been vomiting constantly even though i have been given anti nausea injections. So today feeling very fatigued and a bit low but trying to stay positive.

This is my last day of chemo and then i will go on to the stem cell harvesting machine to collect my cells.

Adrian
01-17-2011, 03:35 PM   #18
AmyWooden
Member
 
Join Date: Jun 2010

My Support Groups:
Adrian- I hope you are feeling better. Keep positive! We are all rooting for you!
__________________
CD diagnosed 1988
Loop ileostomy 12/20/10
Currently on Bentyl and Ultram
Total proctocolectomy in near future
01-17-2011, 06:07 PM   #19
Guest9283
Senior Member
 
Join Date: May 2010
Stay strong Adrian. I know you can pull this off. Looking foward to your next update!
01-18-2011, 01:04 AM   #20
SS410
New Member
 
SS410's Avatar
 
Join Date: Jan 2011
Location: Reno, Nevada
Wow Adrian! You are amazing and you can do this. Can't wait to read your update.
__________________


Surgery on Oct 7.

01-18-2011, 07:01 AM   #21
Dexky
To save time...Ask Dusty!
 
Dexky's Avatar
 
Join Date: May 2010
Location: Kentucky

My Support Groups:
Having watched Zig's journey from the beginning, I am thankful you are sharing this experience with us as well. I'm looking forward to your successes!! Good luck Adrian!!
__________________
Mark, father of EJ

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

No more 6mp
Currently in the Humira Club
01-27-2011, 07:39 AM   #22
adrian mcdonnell
 
Join Date: Jan 2010
Location: derby, United Kingdom
Hi Everyone,

Sorry for the late response but was feeling a bit fatigued, anyway i have finished my chemo and i went Neutropenic 5 days after finishing the chemo. This is where you have no white blood cells left in your body therefore no immune system. At this point you will feel fatigued and you will spike a temperature as i and everyone else who has had this treatment.

Once you have the temperature they will give you antibiotics through your hickmen line and usually within a day or 2 your temperature will go back to normal.For some reason it took 3 days before my temp came down.

After you are confirmed being Neutropenic you start ATG injections which help increase/produce your stemcells ready for harvesting, the injection is once a day for 6 days which is given in your belly area. They inform you that you may get bone pain due to the bone marrow trying to create more stemcells but after all my injections i did not experience any pain.


So, yesterday i went on the stemcell machine which is the same size as an oven and makes a lot of noise. The nurse connected me via my hickmen line and within 5 minutes i was reading my book and relaxing and after 3 hours was told that they had enough cells (piece of cake). I went back to my room and was told that i could go home tomorrow which is today. As i am writing this i am packing my baggs Yipppppppy! I can go home and see my son Christopher even while writing i am building up with tears in my eyes of the thought of seeing him as he is not allowed to visit.

The doctor has informed me that i will be told whether i am on a late or early transplant next week. This means that if early i will be back in 4 weeks if not then 50 weeks.


Take care everyone and just to let you know for the first time in 9 months i have solid stool. Thank you for all your support and thoughts.xx

Adrian

Last edited by adrian mcdonnell; 01-27-2011 at 07:42 AM.
01-27-2011, 07:43 AM   #23
beth
Senior Member
 
Join Date: Mar 2009
Location: United Kingdom

My Support Groups:
Kewl! keep well and stay strong.
01-27-2011, 07:46 AM   #24
Sue-2009
Senior Member
 
Join Date: Nov 2009
Location: Michigan
Hugs and prayers...Sue
01-27-2011, 08:08 AM   #25
spingirl
Senior Member
 
spingirl's Avatar
 
Join Date: Jan 2011
Location: Massachusetts

My Support Groups:
My jaw is dropped. I didn't know they even did this...or that it works...and I agree wholeheartedly with Ian, it is a good feeling to know there is more hope out there. If you live elsewhere...is it easier to be treated this way? Or do you still have to have tried everything else? I have had this since 1985...but only just had bad flare after 15-20 years...I would love to just do this and be done. Is it our insurance companies holding us back? Is this a cure for some? Oh...I have to keep reading. Good luck to you Adrian...I am praying for you and look forward to reading all of your posts!
02-13-2011, 05:29 PM   #26
Dexky
To save time...Ask Dusty!
 
Dexky's Avatar
 
Join Date: May 2010
Location: Kentucky

My Support Groups:
Anything going on now Adrian?
02-19-2011, 12:35 PM   #27
Guest9283
Senior Member
 
Join Date: May 2010
anything going on now adrian?
+1

?
02-20-2011, 09:30 AM   #28
e13 boy
Banned
 
Join Date: Jun 2010

Do you have to have tried surgery first to be eligible?
Hi Ian

I did some reading on this approach 2 years ago.In the criteria i found online it stated that a patient who had previous surgery for CD was not eligible.I stopped reading about because i've had many operations.I'm sure a couple of months ago somebody in the US had posted on this forum they had gone ahead with this treatment despite having previous operations(i can't recall his name - sorry).
Hopefully somebody on here can give more information for you.
02-20-2011, 04:46 PM   #29
Ian
Senior Member
 
Ian's Avatar
 
Join Date: Feb 2010
Location: London, UK
See, I think I found the trial that Adrian is involved in online:

http://www.nottingham.ac.uk/scs/divi...formation.aspx

Under 'Which patients can take part in the study?', one of the criteria is 'you must have symptoms that are not suitable to be treated with surgery'.

Unfortunatley I think that rules me out, otherwise I'd probably be on the phone to them lol.
02-20-2011, 05:29 PM   #30
e13 boy
Banned
 
Join Date: Jun 2010
That looks very similar & it was a Dr in nottingham that i read about.
It states on your link 'must not have D due to short small or large bowel'
ie; no previous operations.
Reply

Crohn's Disease Forum » Treatment » My stem cell transplant
Thread Tools


All times are GMT -5. The time now is 09:21 AM.
Copyright 2006-2017 Crohnsforum.com