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Crohn's Disease Forum

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People suffering from the debilitating bowel condition Crohn's disease may be cured using a groundbreaking stem cell treatment, according to the British doctor leading the research.
Initial findings from the world's first controlled trial of the procedure have raised hopes that it could banish the disease's symptoms for many years in up to half of the patients who undergo it.
The pioneering therapy involves "rebooting" the patient's immune system by first destroying the cells that have attacked the body's immune system to cause the Crohn's, and then replacing them.
Prof Chris Hawkey, a gastroenterologist at Nottingham University, is leading the Autologous Stem Cell Transplantation in Crohn's Disease (Astic) trial. So far 15 patients from six European countries, including three Britons, have taken part, though others are being recruited.
"I'm hopeful that half or more of the partients that undergo stem cell transplantation may either be cured or have a long-term remission," Hawkey said. "We think it's likely that about 50% of people [in the trial] will be cured. We are encouraged. We have a lot of patients that seem to be very well."
Hawkey, other specialist doctors and patients involved in the trial will today meet Alastair Darling, the chancellor, to press for the NHS to offer better treatment across the UK to the estimated 60,000 people who have Crohn's and the 140,000 who suffer from colitis, a similar condition.
Crohn's is a chronic inflammatory bowel disease that typically strikes teenagers and those in their 20s. A lifelong condition, it causes ulceration and inflammation of the digestive tract and is incurable. Existing treatments all involve drugs, which help sufferers control their symptoms but do not offer a cure. It wrecks lives because its embarrassing and painful symptoms – including diarohhea, stomach pains, fatigue and weight loss – can mean that those with the most severe form of Crohn's find it hard to go to school or college, hold down a job or plan a holiday. It is those most acute sufferers who will benefit if the early promise of the Astic trial translates into a viable treatment.
The stem cell treatment, which takes two years, is very painful for patients, and involves risks including bleeding, infection and a 1-2% chance of death. The stem cell transplantation is used to kill off the patient's old bone marrow that produces the harmful cells which cause the Crohn's and generate new healthy cells.
Riding instructor Laura Hancock is one of the three Britons who are taking part in the trial. She had severe sickness and stomach pains after the chemotherapy element of the treatment as well as aching bones caused by injections of growth factor. The pain led to her also suffering lack of sleep, back pain and loss of energy. Ultimately, however, she benefitted from what proved an uncomfortable experience
She told the recent annual general meeting of the National Association for Colitis and Crohn's: "Three months down the line I felt much better and I'm back to my normal energy levels. My recent colonoscopy showed that the Crohn's disease seems to be quite under control."
Helen Terry of the NACC said: "It's not a pleasant treatment for patients because it's painful and carries certain risks. It's not an easy option. But it holds out the prospect of an effective treatment for some people with Crohn's, for whom other, drug-based treatments have proved ineffective. It could mean that people are able to get their conditions under control and get their lives back. We hope that this will prove to be an effective treatment for patients."
The study has been funded by the Broad Foundations, the Los Angeles-based venture philanthropy organisation run by Eli Broad, one of America's biggest philanthropoists, and his wife Edythe. But Hawkey has applied for further funding, with which to finish the trial, to the UK Stem Cell Foundation, which is trying to progress stem cell techniques from laboratories to actual use in treating patients. It is due to make its decision next month.
 
I believe this treatment holds great promise. I am very interested in trying to enroll in this procedure. In Ontario I believe there is a doctor in London at Western University beginning to administer this treatment. It sounds unpleasant but for me personally I would start tomorrow if I could.

Here's hoping for all of us.
 
I believe this treatment holds great promise. I am very interested in trying to enroll in this procedure. In Ontario I believe there is a doctor in London at Western University beginning to administer this treatment. It sounds unpleasant but for me personally I would start tomorrow if I could.

Here's hoping for all of us.[/QUOTE

I completely agree. I am going to write to the university and ask for the current position. I will keep you posted! I hope today is a good day :)
 
No the autogulous transplant Hawkey is doing is NOT the "cure". It can be considered a successfull treatment that may keep the patient in remission from 1-3 years. At 5 years less than 1/4 only are still in remssion. Hawkeys results are worse than that because he is still trying to figure when best it is to start the transplant after harvest. He waits a whole year sometimes which is already proven ineffective here in the states. No reason to wait a year. Second, he needs to move on to donor allogeneic stem cell transplants. THATS WHERE THE POTENTIAL CURE MAY BE. Im suprized he keeps lacking so far behind. If he would just collaberate a bit with the doctors in the states, it would push him years foward.
 
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No the autogulous transplant Hawkey is doing is NOT the "cure" at all. It can be considered a successfull treatment that may keep the patient in remission from 1-3 years. At 5 years less than 1/4 only are still in remssion. Hawkeys results are worse than that because he is still trying to figure when best it is to start the transplant after harvest. He waits a whole year sometimes which is already proven ineffective here in the states. No reason to wait a year. Second, he needs to move on to donor allogeneic stem cell transplants. THATS WHERE THE POTENTIAL CURE MAY BE. Im suprized he keeps lacking so far behind. If he would just collaberate a bit with the doctors in the states, it would push him years foward.

I am intrigued to find out more about this. Would. You be prepared to share your information with me? Have you had this treatment?
 
Yeah no problem, im only on this forum to help. Ive had the autogulous transplant, just before they started doing the donor allogeneic transplants here. Soon as my crohns is back, i'll be back in line for the real thing. You see the problem with the autogulous tranplant (ones own stem cells) is that they are unable to kill the last B lymphacite with crohns because they put the patients own blood back into them. A colonoscopy post autogulous transplant will most likely show remakable results...but the crohns slowly comes back. This is not a waste as we have found that when it comes back, it is a lot milder, can be controlled by medication, and the patients seem to respond to treatments which may have stopped working for them in the past - like remicade. Let me know what other questions you have. These allo transplants are being done by Dr. Richard Burt of Northwestern hospital in Chicago. Previous studies show that 4 patients stayed crohns disease free for 15 years so far with the allo transplant. They are still in good health. There is another patient 2 years out and still well, and then 2 other patients who are still recovering as of these last 2-3 months.
 
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Btw thanks for typing all that out for us, even though im sure there are plenty of people here already sick of me preaching the word of sct's lol. You definitely came to the right crohns forum for this. ;)
 
I guess I just get frustrated by specialists. Your in the room for such a small amount of time. Different opinions between the doctors mean your up and down. When I read the article I just gave me positive hope that some day I may be cured! My own specialist isn't giving much away about other alternative treatments so I have written to the university for more information. It would be nice to be armed with physical evidence ready for when I next go to see my specialist.

I love this forum. So many wonderful peole. Great advice! I just wanted to spread a little hope to anyone who may be suffering!

Thanks for your posts.
 
I guess I just get frustrated by specialists. Your in the room for such a small amount of time. Different opinions between the doctors mean your up and down. When I read the article I just gave me positive hope that some day I may be cured! My own specialist isn't giving much away about other alternative treatments so I have written to the university for more information. It would be nice to be armed with physical evidence ready for when I next go to see my specialist.

I love this forum. So many wonderful peole. Great advice! I just wanted to spread a little hope to anyone who may be suffering!

Thanks for your posts.

Hope is definitely still there! I was just trying to inform you that its the cord donor stem cell transplant that you want to watch, and push for in the UK. I'm sure that is where Dr. Hawkey will eventually end up. If it makes you feel better, I am one that believes it is the closet thing to cure. There is a member on our board who has just completed this donor transplant. If you would like some more info to give to your docs over there, you can show them this current trial currently going on :

http://clinicaltrials.gov/ct2/show/NCT01288053
 
Mr. Ziggy,

I read through your stem cell transplant blog and thank you for taking the time to post on your experiences. It certainly gives hope to many.

I hope you are still feeling well. Is your life essentially back to normal now?

I find your posts on autogulous and allogeneic transplants interesting and saddening that ones own stem cells may not fully cure Crohns, I wish everyone could benefit from this.

When my son was born 7 years ago my wife and I opted to save the cord and we've kept it frozen in case maybe one day a family member may need it.

Can you offer some advice as to how best to get in contact with a doctor that may be doing these trials? What action did you take to get in contact with Dr. Burt?

I wish for everyone that this disease would simply disapear.
 
Mr. Ziggy,

I read through your stem cell transplant blog and thank you for taking the time to post on your experiences. It certainly gives hope to many.

I hope you are still feeling well. Is your life essentially back to normal now?

I find your posts on autogulous and allogeneic transplants interesting and saddening that ones own stem cells may not fully cure Crohns, I wish everyone could benefit from this.

When my son was born 7 years ago my wife and I opted to save the cord and we've kept it frozen in case maybe one day a family member may need it.

Can you offer some advice as to how best to get in contact with a doctor that may be doing these trials? What action did you take to get in contact with Dr. Burt?

I wish for everyone that this disease would simply disapear.

Thanks for reading my blog. It certainly is long enough isnt it lol. I did shorten the into recently, to make it less personal. I was however doing pretty bad before my transplant. My life was spiraling down. Kidneys were failing because i couldnt even absorb water to keep me hydrated. Spent more time in hospital than at home near the end. I feel a lot better nowdays. However I keep a realistic outlook, and know that I am approaching a timeframe where the autogulous transplants usually start relapsing.

I hope too that it (allogeneic) will be avalible sooner to everyone. Unfortunately there is not much money in these transplants, so its basically up to the patients to spread the word, and ask for more research.

I found an article that i have not seen before that states 10 of 11 patients in Germany underwent an allogeneic (donor) stem cell transplant for their crohns. 1 Died from complications (the one that was not counted in remission of the 11), the rest were crohns free at their last checkup - 8 years after the transplant. This is in addition to the previous studies i posted about the patients crohns free at their 15 year follow (allo not auto). I'll double check and post the Germany article tomorrow. Btw I don't believe dr Burt has had any deaths of his transplant patients. I think this comes down to good selection and approval of candidates that are sick, but not deathly sick, to the point were they can't handle the treatment. Also an age limit for the same reason.

If you look for my post tomorrow, I will find Dr. Burts assistants email address so that you can contact her. She will briefly evaluate if she thinks you meet the criteria, after you fax your file. If so she will make an appointment for you to see dr Burt, and discuss the procedure. His GI partner and him will also evaluate you for the transpant then, and decide on approval (you have to meet the criteria). At that point, if you are approved, they then get everything ready to submit to insurance. HLA stem cell donor matching begins - or they test your siblings for matches. These days donor matching has come a long way, is a lot easier and safer. Obviously not risk free of course as you can tell from my blog.

http://www.youtube.com/watch?v=n-vo-n5awjk Little youtube vid of Dr. Burt at Northwestern on stem cells
 
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