Stem cell replacement

[Jessicaallen]

Hi I'm 25 and a chrons sufferer. I was 12 years old when I was diagnosed with chrons disease! They started me off on high doses of prednisolone, with no real effect. Reduced inflammation slightly. I suffered for the next 3 years with constant trips to hospital. I was bound to a wheel chair due to inflammation. My feet swelled to twice the size of my feet and i had painful poisonous lumps on my legs. I was placed on tube feeds for 6 months due to the severity of my condition. This was to completely rest my bowel. Again another treatment that failed for me. I was then tried on azathioprine which had no results. This led me to try alternative treatments;reiki healing, reflexology, Chinese medicines all of which gave me no relief. My level of pain was at an all time high. By the age of 15 the professor at the children's hospital tried me on infliximab, which was a relatively new drug and had miraculous effects on my condition. The drug kept my chrons to a manageable condition mixing good days with bad. This drug unfortunately started to fail due to my body building up an immunity to it. Back to square one. My consultant started me on adilibamab last year this drug had no real success. He then tried me on methatrexate which was a horrible drug for me it's been the worse for side effects. Throughout the the years I've also been on courses of IV hydrocortisone which is effective but only for short periods at a time. Over the last 6 months I've been back on prednisolone and azithioprine and they are having no effect, I'm now classed as a resistant patient and no medication works for me. My consultant now can only offer me a stem cell transplant as surgery is not possible. I'm currently having infliximab infusions to try and give some relief from the pain and symptoms. This is prepping me for the stem cell replacement. I'm on permanent pain medicine which is oramorph and tramadol. I'm currently having meetings with doctors and haematology doctors to plan and finalise this very big step in my life. I can carry on with this debilitating disease, but I'm not ready to give up yet!! If anyone else has been given this option, knows of anyone who has had a stem cell replacement I would really apreciate it of you could help me out as I'm entering the unknown.

 

[rygon]

Hi and welcome to the forum. Sounds like you have had a pretty bad time with crohns unfortunately.

Theres quite a few people on this forum who have had positive results with stem cell treatment. If you have any more questions about stem cell it would be worth posting in the treatment area. That way you will get more people looking at your question

Heres the Sticky from that area about stem cell treatment http://www.crohnsforum.com/showthread.php?t=22259

 

[DustyKat]

Hi Jessica and :welcome:

I'm so sorry to hear of all you are going through... but glad you found your way here.

I have no experience with SCT but we do have a few members here that do! Take a look at this thread, it will link you to everyone here that has experience with them and their stories. I'm sure they won't mind if you PM too...

http://www.crohnsforum.com/showthread.php?t=22259

Ziggy and effdee are around but I haven't seen Adrian in a while which is a shame because he is UK based.

Good luck hun and let us know how you get on!

Dusty. :heart:

 

[Kelly2]

Hi Jessica,

Welcome to the forum. Sorry to hear you have been going through such a bad time. If you have built up immunity to the Remicade, and failed to respond to the Humira, while waiting for the stem cell transplant, why don't they try you on Cimzia? It is in the same class of drugs as Remicade which it seems helped you for a very long time. You have come to the right place to read about other experiences with stem cell transplants. Ziggy's journey is a very in-depth day to day account of exactly what it is all about. It has healed some very sick people who had stopped responding to other meds. Just remember that Ziggy had the autogulous transplant (which is probably what you would have in the UK), where they "reset" your own immune system, and Effdee had the allogeneic transplant (where they wipe out your immune system, and replace it with a donor's immune system). Also, find out how long they wait to reinfuse your own stem cells back into you. Over in the States, they do it right away, but I have heard some reports where they wait quite a while over in the UK.

Best of luck to you, and let us know if you need anything or have any questions.

 

[bozzylozzy]

Hi jessica, I think i was in hospital with you last autumn?
if you are the same person, ive been wondering how you were getting on.

(im lauren, i gave you a book.. and there was some crazy old women with alzheimers on our ward) lol! i hope you can get some successful treatment soon xx

 

[xJillx]

Hi Jessica and welcome! Boy, you have been through so much. I think pursuing a stem cell replacement is a smart move. As my friends above have said, we have had a few members have successful transplants. And, as far as I last heard, the first person to receive a transplant in 2001 is still in remission.

Good luck and best wishes! Please keep us posted.

 

[lancek]

I would like to learn and read more about the idea of stem cell replacements. It sounds promising.

 

[Jessicaallen]

Hi thanks everyone for the kind words I've read ziggys diary but he just stopped posting do we know if he is ok?? I have a meeting on the 11th with more information about the stem cell so I will be sure to update everyone.

 

[xJillx]

Hi thanks everyone for the kind words I've read ziggys diary but he just stopped posting do we know if he is ok?? I have a meeting on the 11th with more information about the stem cell so I will be sure to update everyone.

Mr. Ziggy still makes appearances on here every once and awhile. I am quite sure he is still doing very well. I suggest you send him a private message. I am sure he'd be happy to answer any questions you have.

 

[rygon]

I think you will find that once people feel better they stop visiting this forum so often.

 

[lancek]

I think that is probably very true!!

 

[seaofdreams]

Wow, I'm so sorry to hear that you've been so sick but I hope that your stem cell treatment goes amazingly well and you get some relief. I wish you all the luck I can muster! Please keep us updated.