42 years Crohns

[Crohnie56]

Hello all: new to this site but fell my 42 years of Crohns Disease experience may be good for some. I have had 4 resections, only 120cm of Small Intestines remaining. A STEM Cell Transplant with Chemotherapy and have been prescribed all drugs known to man to stop the progression of Crohns. After 4 resections, in 2008 underwent a year long STEM Cell Transplant which just about killed me due to the Chemo....a year on the antirejection medications. I have had no more resections, knock on wood!

Since STEM Cell Transplant in 2008: diagnosed with Ulcerative Colitis, skin cancer on ear, 2 Strokes in 33 days, Prostate Cancer, Anemia, and recently Verrucous carcinoma on right thigh which left a large scar. Most notably is Anemia with shortness of breath. Was in hospital last 5 days for 6 Iron transfusions. No fun.....

Keys to managing life as a "Chronie": attitude and always staying positive. You have to be an advocate for yourself. Since undergoing many surgeries and treatment for Crohns I have accomplished more in life than I ever though i would or could have accomplished. Attitude is most important. Also, exercise is the other important factor along with managing a good diet.

I think exercise and attitude made me a much better Chronie.

It is hard as I go into the later part of life with Crohns. But what the hell.....I made it and I did it my way! Advocate for yourself, explore, read, read and read.

I found the STEM Cell transplant by calling a doctor in England who hooked me up with a great doctor at Northwestern. All because I did not just sit back and settle for the same old treatment. No way, this is my life and I will never, ever give up! Failure as we all know if never an option.

Stay positive even when it hurts like hell, Live your life your way, go for it!!!

Crohnie56

 

[Guerrero]

Hello Crohnie56 and welcome,

thank you for sharing your long and struggling experience with ibd. Quite an unlucky situation you seem to have managed very well with the right attitude.

How does the stem cells treatment work, I mean how do you take it?
Did you fail all the biologics treatments before switching to stem cells?

 

[Crohnie56]

Yes failed every biologic known to man...LOL STEM Cell Transplant ia long and hard.

1. Go thru screening about 3 days in hospital
2. Harvest your own STEM Cells - takes a day or so inpatient
3. The admit to hospital
4. More testing
5. After about 3 days they start the Chemo - worst experience ever- don't remember all of it
6. After the CHEMO lowers or kills your immune system the re-input the harvested stem cells
7. You then spend 30 days in isolation - reverse air room
8. Then you get discharged and stay near the hospital for 2 weeks just in case
9. Take anti-rejection Medicine and other items for the next year

At the time I did it was experimental so my insurance did not cover it. I had to use my entire life savings
Would do it again!!!

 

[Scipio]

Interesting. But why do you need anti-rejection medication if you are receiving your own previously harvested stem cells? Since they arose from you they should be entirely immunologically compatible.

 

[Crohnie56]

The Northwestern autologous STEM Cell program's methods alter your harvested STEM Cells in a manner I am not privy to. That is why the STEM Cells are harvested prior to going into the hospital for the procedure so they can manage the harvested STEM Cells. Of course being an experimental program, I don't know if they will share the details. Dr. was Richard Burt, MD, Northwestern Oncology Department ran the program. Do not believe the program is still operational.

 

[Jbungie]

That is a HEAVY DUTY treatment dude! They are basically erasing your immune system, glad to hear you got thru it!

 

[Crohnie56]

Jbungie: yes it was like "Rebooting" your computer. The program was about half "Chronies" and half Lupus patients. Some folks did not make it thru the Chemo so it was not a total success but as far as I am concerned they saved me from further resections, knock on wood!