Well, i went to Nottingham yesterday to see a preffessor christopher hawkey , about a possible treatment for my aggressive crohns, its in the form of stem cell theropy which used to be known as a bone marrow transplant. this is how it happens , if im accepted onto the trials , i'll be subjected to ALL the tests they use to determine what disease we have and how bad it is , then they would give me a 2 day course of chemo then a 6 day course of a growth hormone, this would make my bone marrow work really hard and over produce stem cells untill they come out into my blood stream, this apparently feels like your bones are exploding and is pretty painfull.  they then collect all the over produced stemcells, and clean out all the corrupt ones then freeze them. they then give you a huge dose of very strong chemo and completly kill off your immune system which is apparently is the very dangerus time because it leaves you open to every infection going, apparently the common cold is like full blown flu , they then re-introduce your stem cells an thats it then , job done time to relax and recover. its quie long , drawn out and isnt garenteed . the only other option for me is surgery leaving me with a illeostomy , im still very torn about which route to take, any way just thought i'd post this message, for myself really aswell as informing you guys on some progress . stay well every one.

Hey chezzy Lad,

Just read your message and I am in the same boat as you.  I have got severe Crohns and all the drugs are not working, I have been on Adalimumab since Nov after trying everything else and it aint working.  I feel like CRAP all day every day!!  I go to 2 different hospitals for my crohns one in Inverness and one in Aberdeen.  Inverness is my local hospital and they have suggested that I since this new drug is not working i might be accepted for this Stem Cell trial in Nottingham like yourself. My Prof GI consultant in Aberdeen is very good friends with Prof Hawkey and is the editor of new editor of GUT so Im in a bit of a muddle. I'm interested in what you think of the Astic trial?

Cheers
Neilfisk

Hi Chezzy lad,
  I am in the exact same position as yourself, i was diagnosed with crohn's 15 years ago and have tried and tested every medication apart from Low dose Nitroxene which is very hard to get a prescription in this country, but annoyingly you can go to the states and get it. Anyway, my consultant from Derby hospital as request to Proffesor Hawkey that i have the option to try Stem cell implant as my only other alternative is complte removal of my bowel( i really don't like the idea of having a stoma permantly). Please keep me informed of your decision and if you do go a head i would really appreciate a progress report and obviously i will do the same.

Adrian

hey guys, thank you for yur interest in my thread, in some ways its comforting to know that im not in this boat alone. where to begin on my current thoughts on this treatment. i suppose really its a god send, its a possible break through or maby a step closer to a cure, prof hawkey did specify though that if it is successful, then it doesn't "cure" you, it takes you back to a stage before you had the disease, so although you dont have it, you could get it, again. prof hawkey also said that if the treatment isn't successful, regards taking you back to that state, then as a consilation prize, regular treatments and drugs tend to be more effective as a result of the stem cell. i dont know about you guys but to me, i dont think i'd like the thought of having my hopes built up to potentially be let down so dramaticly, thats one of my doubts, theres also a chance that IF i'm successfull in getting on the trial, theres a strong chance that treatment wont start for another year due to the way they run the program, they feed your name into a computer thats conected to all the other hospitals thats perorming this same trial, and that decides whether you start your treatment now or in a years time, its somthing to do with how they collect there findings from the tests, im not sure exactly.
im just so uncertain of which route to take, there are times when i think , yes im strong enough lets give the green light to the stem cell, but then i think no im not strong enough, then there are other times when im in so much pain and discomfort when i just think right , im ready for the surgery, now !!! then after some strong pain killers , things tend to settle down abit an i think im ok. obviously im not ok , i was waighed on saturday and ive lost another half a stone in a week, but i just carnt make the descision , i'll keep you informed of how im getting on.
speak soon
  chris.

This is my 1st time on this site and I too have just been told that my doctor wants to put me forward for stem cell treatment as I am only 21 but if I dont get my crohns sorted rapidly I will be left permantly with a colostomy bag. No treatment seems to be working I am now on salidomide which is the last thing to try but I am so scared that they wont take me on the trial and if they do take me it may be too late and i would need surgery before I get the chance it makes it harder knowing that there is this treatment out there that could really change things for me as crohns always seems to get in the way of me doing things (work, parenting) but it may be too late. Im too scared to research the treatment as I dont want to get my hopes up. Im interested in watching this thread it will be nice to see someone elses experience as no one I know understands what I am going through

Donna xx

hey donna, first things first, and beleave me i know how hard it is , but try not to let it get to you to much , like you and every one else that uses this site, this disease is always on my mind, always in my chain of thoughts but i try not to let it get to me. now as far as this stem cell goes, my doctor never brought up the subject as far as treatments go, i actually only heard about it from my mam who read about it in the dailey mail. i then researched it abit and found an email address for proff hawkey, when i mentioned it to my consultant he said its still in trial stages , and its not a normal treatment , an its not a miricle cure, and the next normal standard form of treatment at the stage im at would be surgery for an illeostomy. now the thought of having that sort of surgery scares the hell out of me, but the thought of having stem cell theropy scares me quite alot more, i think mainly bcoz its so new and so many people are so unsure of it, its also a case of you have to be accepted for the trials, so if i was to go for it then be told no sorry , youve been unsuccessful with your application would just be a huge kick in the nuts for me, it would be like the donkey that never reaches the carrot. as far as the surgery goes, having a colonostmy or illeostmy doesnt sound as bad as what your imagination lets you think, ive spoken to a few people who have got one and they all lead perfectly normal lives, my step dads cousin refs football and goes swimming, and one lad whos a year younger than me said he wishes he hadnt waited so long to have it done. so i dont know....... all i do know is , that which ever route i take, i'll be taking it before you by the sounds of it , so i'll keep you informed of what its like. dont ever feel alone donna, theres always someone on here that will know exactly what your going through and how your feeling, try and keep your chin up

thank you chezzy lad I will watch the thread and see how you get on. I have an appointment on thursday with my consultant so will find out whats happening then hopefully

your welcome donna, i hope all goes well with your appointment on thursday, speak soon, stay well x

Hey everyone. Just been reading more on this stem cell trial in nottingham and have seen that there is a programme about it. Its on the community channel sky 539 and its on on monday, starts at 8.30am but is on through out the day. I have not seen it myself so am looking forward to seeing it. Just thought i's let everyone who is interested in it know.
Cheers
Neilfisk

nice one neilfisk, cheers , lol only thing is i dont have sky telly . if some one could watch it then let me know what it was like an what the think then that would be cool , ta

Hey Chezzy Lad, Ile be watching it so ile let you know what the score is when it's on. You can if you wanted too, go to the Commuity channel website,register and then login. Then search for Crohns in the search box and it will take you to the video link.

Take it easy mate and hope that helps

Cheers

Neilfisk

Well I had my consultant appointment on thursday got kept in my consultant is in talks with Proffeser Hawkey to get the stem cell treatment done A.S.A.P they are in talks of beginning it in Edinburgh which is good as it is alot closer my consultant seems to think it is all gonna happen in a matter of days which seems very unlikly but I will wait and see should find out more during the week

Donna x

I think this is the program.
Very Interesting.

http://www.communitychannel.org/index.php?option=com_rnvideoarchive&task=view&vidclip=275&Itemid=139

Any updates who went to see about this.

Hi steve

I had my meeting 3 weeks ago and should find out next week when I begin the treatment

Donna