I read this article earlier (click Here) on the Daily Mail website. It seems there may be a major development in the finding of a cure for Crohn’s Disease. It is still under trial at the minute, so we are quite a way off this being mainstream. It does look quite promising though, with over 50% of patients seeing their Crohn’s Disease fade away.
It doesnt say how many people have been tried on this method or the bad reactions that may of been had by the other 40 odd percent of patients. We can assume that there still needs to be alot more research into it.
Please read the article and let me know what you think. Is this the start of the end for Crohn’s or is it just another study that will lead nowhere? Do you know of anyone else who has had this treatment? For me personally it shows major progress in understanding the disease. I would love to believe there is a cure out there on the horizon, but for the time being I will focus on what can be done now, which for me is surgery.
May 12th, 2010 10:32
Hi Ben,
I also read this yesterday… Not sure if I would like to spend £24k for a 50/50 chance though!
Definitely agree that it is promising that they seem to be making progress with research although, with the NHS struggling to provide Infliximab for longer than 12 months, I can’t see this becoming freely available to all if it does become a proven treatment.
Hope you are having a good week.
Kat
P.S Thanks for the Lemon & Ginger Tea tip, I’m finding it really helpful along with Deep Heat Patches!
May 12th, 2010 11:26
Hello Kat
Glad to hear my Tea tip is helping. Its a brilliant drink to help settle the tummy.
£24k for a 50/50 chance is a pretty high risk and your right, the NHS couldnt pay for this at the minute, not unless it becomes cheaper and is garanteed to keep us Crohnies away from further meds and hospital treatment. If it was a total cure, I think the NHS would cover it as in the long term it would probably work out cheaper.
Keep well
Ben
May 21st, 2010 16:24
Hey,
I have just become friends with Ben on facebook and as he knows I have just had a stem cell transplant for Crohn’s. It is far to early in the process to say that it is a cure, but I am the fifth person on this trial and everyone has received some form of remission from disease. And when they have had the first warnings of active disease the meds that have previously stopped working appear to work after the treatment. Wierdly PCT’s are now paying for patients on the trial as the ‘funding’ has run out.
For me I have only been out of hospital for a few weeks, so I am very early in the process. But even so I had upper GI crohn’s which meant I was mostly unable to eat solid food and in the last 10 days, the ulcerations in my mouth and windpipe have reduced enough for me to now rely less on my liquid food and more on normal solid food. I am hopeful that I will soon be in full remission.
This is not an easy road and it has made me very ill and recovery just from the process can take a year, but having upper GI crohn’s where surgery is not really an option it was worth the gamble.
We shall see how good it actually is.
Sarah xx
May 22nd, 2010 19:39
Hello Again Sarah
Please keep us updated on here with your progress (or just Facebook me and I will put something useful on here)
Good luck and I hope the eating of proper food each day comes soon
Ben
July 20th, 2010 14:15
hi Sarah,
i was wondering if you could tell me a bit more about the Stem Cell treatment? How did you get put on the trial? Where are you from? I thought of asking my consultant about this as we have run out of treatments to try but not sure how to approach this.
Any help would be brilliant.
loren xx
November 7th, 2010 14:10
Hi,
Sorry for the delay in replying, but I have been a bit crap, but also waiting to see how I get on.
Stem cell treatment is not the ‘cure’ they thought it would be. I have been increasingly gettin gill over the last few months and I am now back on humira.
The trial has also been run in Chicago, where they have just completed the 5 year follow up and most people didn’t see complete remission. The ‘consolation’ prize (as my consultant said) is that I should now be more responsive to the meds I wasn’t to prior to the transplant. But it does seem a lot to go through…
We shall see how it goes.
xx
November 7th, 2010 14:30
Hi Sarah
Its a shame it hasnt worked as hoped, especially as I know how difficult it has been for you. It wasnt a pleasant treatment at all. Lets hope you are more responsive to the medications, so at least something useful comes from the treatment.
There is more and more knowledge around Crohn’s Disease as well as rising media attention. So hopefully, with the exposure and money, it is only a matter of time until a true cure appears.
Until then, we carry on trying to control it ourselves with a mix of medication, careful diet and the support of each other.
Keep well (as well as can be)
Speak soon
Ben x