Stem Cell Treatment

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Claire617

Claire617

Joined
Nov 1, 2009
Messages
277
Heya, basically I'm trying to find out as much as I can on this subject, I've spent the last year in a flare and now my life is totally diminished, I sit at home all day because if I move my stomach has a go at me.
No drugs are putting me into remission, I have been put on methotrexate injections however the only upside to them if that Im not being sick, well you all know what its like.
Anyway my consultant is one of the doctors involved in the clinical trials in nottingham and I have an appointment with him on thurs he mentioned it to me before but we were trying out Humira back then so it wasnt an issue hoping that would work.
I've looked at the subject as much as I can on the net so before I open that can of worms with him I was just wondering what people think on it?? Would you resort to it?? Also If anyones actually had it??
 
I'm waiting for my GI to find the right concoction to use. He's hoping that in two years or so they will be able to have another trial and I'm awaiting for that.

I wouldn't consider embryonic stem cells but I'm looking forward to being treated using stem cells from fat tissue. That way they use my own fat so I don't reject it, that's not the same for embryonic stem cells.
 
Are you referring to stem cell transplant?? We have actually had two people post (might have been just one, can't remember) on this subject. One guy was from Canada I believe - and he has a blog. Will have to see if I can find the thread. If you are talking about the transplant (self transplant - can't remember exactly what it is called) - it can be risky - but I'm sure if you have researched it well you know that already. Also - not sure where you live, but I don't think this treatment is available everywhere yet. I'll try and find that thread for you.
 
Thanks Peaches, Yeah was on about transplant, I live in Cornwall in England, I know Nottingham had clinical trials in 2009 and as my consultant was one of the doctors leading the treatment, was hoping to get my foot in the door if this was a road to go down.
It's just getting to that point where you're willing to try anything.
 
I hear you hon - I've tried everything in that long list of yours except for Humira...that one is probably next for me.

Keep us posted ok?
 
I think Stem cell is the future of curing diseases, just my opinion. What I dont get is why can they do heart, liver, kidney transplants but not intestines.. maybe from a pig for instance? NO?
 
I have always thought the same thing Pen

THis stem cell stuff is really interesting, Ive got some reading to do
 
The Dr. at UCLA last week proposed this to me at Northwestern University in Illinois. Basically if Humira and Metho don't work for me then it is either bye-bye colon or the more drastic Stem Cell/Bone Marrow transplant. He said they had treated 20 patients with the stem cell transplant, 16 of which are in remission and on no drugs, 2 on some drugs, and 2 didn't respond to the treatment at all.

After talking and reading about it, I think I would go with the colon removal. The stem cell procedure just sounds like nasty risky stuff.
 
It is pretty scary to me.....They pretty much kill off your entire immune sysytem, then reintroduce stem cells to reboot it. The risk of dying from infection while you are without immunity is scary......I would have to really be at the end of my rope.
 
Yeah true, that is a little scary.
I guess Im just more of a risk taker, so I dont think about those things. Just the positive side of it.
 
They basically give you Chemo till your immune system is on par with someone with fully active AIDS. Then they reset it with the new stem cells. It is just as dangerous as Chemo for someone with Cancer.

Autologous Stem-Cell Transplant: Phases of the Procedure

When the case is detected (that does not respond to drugs or surgery), the patient undergoes an autologous stem-cell transplant, which is a bone-morrow transplant in which the immune system is reset to prevent it from attacking the intestinal flora. The process lasts approximately 2 months and consists of 6 phases:

* Initial Chemotherapy (Cyclophosphamide + G-CSF). In this initial phase, leukopenia or reduction of the number of leukocytes (immune-system cells) in the blood is induced in the patient.
* Migration of Stem-Cells to the Blood. Following the previous immunosuppression, the organism reacts by releasing stem cells from the bone marrow into the blood; these are the cells which will later be used for the transplant.
* Collection of Stem Cells by means of Apheresis. Apheresis is a technique that separates components of the blood. Here, the stem cells that previously migrated from the bone marrow are separated.
* Cryopreservation of Stem Cells. When the stem cells have been collected by apheresis, they are frozen and preserved until ready for transplant.
* Second Chemotherapy. In this phase, total leukopenia is induced; that is, the immune system is left devoid of leukocytes, ready to be reset with the stem-cell transplant.
* Autologous Stem-Cell Transplant. The patient receives the transplant by means of transfusion with his or her own stem cells. The immune system is reset, leading to remission or reduction of the abnormal inflammatory process of Crohn's disease.
 
Fog Ducker said:
Yeah true, that is a little scary.
I guess Im just more of a risk taker, so I dont think about those things. Just the positive side of it.
Click to expand...

Would have to say that's my mindset on things, dunno if its a good thing or bad thing the whole idea of destroyed immune system is scary but i'm running out of options and getting desperate :(
 
Claire and the rest of the crew...I am a newly diagnosed Crohns patient. I thought surgery was the next step if meds don't work? Can someone help me explain...this is such an awful disease....Does anyone know if HR 2084 proposal will help us? Sue
 
Hey, My GI consultant wants me to go down to Nottingham and see Prof Hawkey. I have been on all the drugs available AZA, MTX, Thulidomide, Inflixamab and nothing works. I am still undecided on the ASTIC trial, it takes over 2 years and very painful

Neilfisk
 
Well I saw my doc today and its either my whole colon out and have a bag which he would prefer I do or I get a second opinion and go for this, definitely swaying more towards the ASTIC trial though - Hey Sue someone correct me if I'm wrong but surgery is a way of tackling symptoms not the actual problem which is the immune system
 
The Dr. at UCLA said if I had my colon removed it would pretty much take me off drugs for life. Though he said it would be an internal pouch with normal digestive function.

Both options scare the hell out of me.
 
Sorry for me being ignorant and I guess I could google it, but how can the internal pouch have normal digestive function? And who is to say that the disease doesnt start attaking the remaining part of intestine?

Not trying to be negative here I just dont know a lot about the surgery side of this disease. I guess I have been closed minded about learning about it in the past because I was in denial about the possibility of having to go that route myself.
 
He said at UCLA they remove the colon and create an internal pouch and connect that to the rectum. Ileal pouch reconstruction. It is more common for UC than Crohn's. I had always been told I had Crohn's, he was not so sure so he game me a serum to test to determine if it was UC or Crohn's.

He then proposed the Stem Cell thing at Northwestern as another alternative.

I didn't dive much deeper as he felt I should see how I do on the Humira/Metho combo for at least 3-4 months. If those don't take then one of the above two options.
 
I think I posted this before. I have the J Pouch. I had Colitis. They looked around and saw no signs for Crohns three years ago. To my disappointment, in November--Got diagnosed with Crohns! I cried for a week (okay--more than a week). So, yes you are right that surgery removes the "problem" not the cause. I would have to do some serious investigations before I did a stem cell trans. THat scares me! I would need more education. My friend who is suffering from Lukemia, had hers three years ago and is still seriously ill. THe j pouch, was successful for me. But, the darn pouch is filled with Crohns now..Ugh! So, I don't know what I would do if I were you. The pouch has been good..but, to get rid of Crohns....ahhhh life before bathroom trips unlimited....Mmmmm, let us know what you learn and decide. I'll be thinking about you...Sue P.S. I'm back on the meds!!!
 
I'm really confused! What is the J pouch made of? I assume something synthetic, so how can the crohns get into the pouch??
It seems that whichever way you turn, crohns just slaps you with another wet fish!!
 
The J Pouch is made of your small intestine, you can go to jpouch.org and learn more about it. Its a great support sight, even if you are not a jpoucher yet--they will answer any and all questions. When I originally had the surgery, I "shopped" someone well experienced in creating it. Their experience I feel has much to do with the functioning of the pouch. You still use the bm alot--like 8 times. But with a SUCCESSFUL pouch, you have control. With colitis, at the end I didn't YUCK!! But, when I had my surgeon he made sure (or thought) that I did not have crohns. Well, three years later, that crazy pouch. Which I am trying like heck to save, is filled with the crohns. Samantha, I do feel like it slapped me in the face!!! Sue
 
Sue-2009 said:
The J Pouch is made of your small intestine, you can go to jpouch.org and learn more about it. Its a great support sight, even if you are not a jpoucher yet--they will answer any and all questions. When I originally had the surgery, I "shopped" someone well experienced in creating it. Their experience I feel has much to do with the functioning of the pouch. You still use the bm alot--like 8 times. But with a SUCCESSFUL pouch, you have control. With colitis, at the end I didn't YUCK!! But, when I had my surgeon he made sure (or thought) that I did not have crohns. Well, three years later, that crazy pouch. Which I am trying like heck to save, is filled with the crohns. Samantha, I do feel like it slapped me in the face!!! Sue
Click to expand...

That does seem to be the risk unfortunately. It appears once you exhaust your drug options the remaining options really stink. Hoping I can get some relief from Humira/Metho and something better comes up in the future.
 
You and me both Mini Cooper!! They need to spend more time and money on research. It angers me that more research isn't done for auto immune problems that have been around for many many years. On the flip side, I am waiting to hear how the brave Stem Cell people will be doing. Don't quit posting. And keep us updated.. Sue
 
Hey all, just been reading into this stem cell research and read that there is a programme on the community channel sky 539 on Monday. It's on at 8.30am but noticed it's on again through the day. Its all about the stem cell trial in nottingham. just thought I'd let you all know, have not seen it myself but looking forward to seen it.
Keep well everyone
Cheers
Neilfisk
 
Your choice

CrohnsHobo said:
That does seem to be the risk unfortunately. It appears once you exhaust your drug options the remaining options really stink. Hoping I can get some relief from Humira/Metho and something better comes up in the future.
Click to expand...

I hope it works for you..please please keep us posted. Sue
 
I have a more positive outlook on Stem Cells for crohn's than most. So far it has an 80% success rate out of the study in chicago. In spain they are offering it as an alternative treatment for the last 1-2 years not just in trials!
Sure you have an increased risk of some cancers...so what are you saying, that all the other drugs we take don't????????? The majority of the drugs we take and combinations of drugs we take that increase our cancer risk still don't have an 80% success rate. Oh so then you might say there has not been enough trials done... Well there has been something like a million stem cell transplants completed when you take into consideration all the other illnesses it has been used on. - It's not a new procedure.

With that in mind, I am currently enrolling in the study in Chicago, and could not be more excited, or more positive about my future.
 
Sue-2009 said:
You and me both Mini Cooper!! They need to spend more time and money on research. It angers me that more research isn't done for auto immune problems that have been around for many many years. On the flip side, I am waiting to hear how the brave Stem Cell people will be doing. Don't quit posting. And keep us updated.. Sue
Click to expand...


I will keep you updated Sue. There are a few other stories out there similar to that kid from Canada who have posted blogs. I will try to find them - They are all inspirational with no downside to their stories. :)

Oh also the first one was performed in 2002, and the crohn's patient is still in full remission!! Makes you wonder why countries like spain are so much more ahead of us when it comes to this. If this becomes as successful as many hope, can you imagine all the drug companies like infliximab(remicade) that would go bust! Just makes you wonder why its taking us so darn long... Just saying...
 
It is not the cancer risk that scares me. It is dropping my immune system to dangerously low levels through multiple rounds of chemotherapy.

Something I would like to avoid unless it is a last ditch effort. I think I would have to be a lot more sick than I am currently before I went to those lengths.
 
CrohnsHobo said:
It is not the cancer risk that scares me. It is dropping my immune system to dangerously low levels through multiple rounds of chemotherapy.

Something I would like to avoid unless it is a last ditch effort. I think I would have to be a lot more sick than I am currently before I went to those lengths.
Click to expand...

Yes it is scary depending on how you look at it. I am 25, and for me it is well worth it. I look at the statistics and am comfortable with the risk/reward ratio. I guess MAYBE if I was older, married with children and settled, then I MIGHT consider a bag over the stem cell transplant. This is just my outlook. If I had not tried every drug out there and stuggled back and forth over the last 13 years with crohn's I might see things differently. I can honestly say I have little fear with going forth with this right now. Thats just me...
 
I couldnt agree with your outlook more Slick! To me the possible rewards far out weigh the possible risks, but thats just me, I am a big risk taker.
Be sure and kep us updated on how you make out. :)
 
The stem cell transplant option is very scary. My husband was in the Prochymal stem cell replacement clinical trials, but he just got worse. We think he got placebo. But that's not the same as the transplant process.

Anyway, since you are close to the Univ. of Nottingham, have you not heard that they are doing a clinical trial with Helminths for people with Crohn's? I would try this way before stem cell transplant. They are infecting Crohn's patients with 10 hookworms. Apparently the hookworms turn off the immune response by secreting a certain protein as a form of self preservation. It's quite genius. I know someone in remission from it after 20 hard years. My husband tried it (via Tijuana Mexico since there are no other way to get it here in the US). He had 25 worms put in - clear liquid, goes on a patch which gets stuck on your arm and the microscopic larvae go thru the skin into the bloodstream.
It took 3 months for the body to adjust (and it was brutal because he put a large # at once), but he began to feel great after the 3rd month like clockwork. Unfortunately, this only lasted about a month because he went on a routine Dr. visit and they gave him a tetanus vaccine which killed the worms. The one time I didn't go with him too....achhh!

It is worth a shot, especially since you have the top researchers right there. Anyway, food for thought.
 
Hey all you Crohnies...I'm so glad I found all of you (((hug)))! Mr Slick, you got this insane disease at 12! Unflippin' believable!!! My heart goes to you and your family. I worry for my daughters. So, pleae, please yes keep me posted. All of you! the hook worms I'd try....the stem cell...welll...I'd have to be at the end of my rope, with two nine year olds hearts breaking when I go into hospital asking if I'm dying...I don't know, I might go the bag.....But, just get this into remission is my goal. U of M has a forum this week talking about the latest and greatest for Crohnies...I'll try to go and pass on info...I want to know where that LDN is, hookworms etc. I think it should all be out there for US Crohnies to see!! I don't know...I've said it before...They come up with meds and drugs to get other well known illness' under control haven't they? WHat about the Auto Immune Conditions!!!!!! Okay...enough...Sorry----Peace, Sue
 
Fog Ducker said:
There is a thread around here talking about the hookworm therapy
Here it is http://www.crohnsforum.com/showthread.php?t=6008&highlight=hookworm

You say your husband went to Mexico to get it, was it expensive? Since it was working do you think he will try it again?
Click to expand...

It was $1600 for 25 worms, but I know the price has gone up. He did really well and I have a friend who in remission and doing great. Unfortunately, he lost the worms and when we re-infected he had such a severe reaction he had to terminate treatment. It turns out 25 was too many at once. It put him in the hospital. He couldn't stop throwing up. I would try no more than 10 worms, then adding 5 more a few months later and so on. Proceed with caution. It takes 3 months to start feeling the effects. If you are interested here is the website:
http://www.wormtherapy.com/index.html

Garin is very helpful and informative. You go to San Diego, then cross the border to get treated. We were in MX for about 1/2 hour...it was that fast!
Scott may try it again if the LDN fails. It's just that there are so many unknown factors with the worms. You really have to be careful not to kill them and we are learning of more and more things that can cause then to die. It's a tricky one.
 
Hey guys I'm not near your point or anything close and I'm sorry for your conditions right now. I'm writing because I'm attending university and have access to all the latest published studies out there. I just found an article in an academic journal summarizing and anaylizing 107 different studies on stem cell treatement for Crohn's and combing their results. Their conclusion was that "In autoimmune gastrointestinal disorders Haematopoietic stem cell transplantation, it seems that high-dose chemotherapy followed by HSCT is feasible and safe and might result in long-term improvement of disease activity."

So anyways there are 1000s of studies on this done and this was a review of 107 of them done by the Department of Gastronenterology and Hepatology University Medical Center Amsterdam. I dunno if that helps any of you but I found it suprising that he does say it is safe.

Oh and I would copy and paste it but it won't let me. It has a copyright on it.
 
I am sure I work for the company the published a majority of those studies. I get free access to all of that stuff working for the worlds largest publisher of research material.

Still does not make me feel better about it. lol
 
Im BACK!! Mr Slick/Ziggy here. I got kicked from the site for reasons unknown to me and decided not to come back because of it. However I went to Chicago, met 3 dr's that are doing the Autologous Hematopoietic stem cell transplants. They met me and told me they would give me an answer in a week after dicussing wheather I was a good candidate for the transplant. Long story short 1 denied, 2 over ruled and insurance approved the 1/4 million dollar procedure. I am flying up monday, and thought it would e an injustice if I didn't share this with my fellow crohnies. That is what made me decide to come back here. So I will be making an entire non biased, detailed blog, with the good, bad, ugly and everything in between in the treatment section in the next couple days. Even though there are not as many people that have done it (30 in just this one trial), it is to date the MOST effective thearpy for crohn's known to date. I fly out and start phaze one on monday. Join me on my journey if you like - This one is for you guys =)
 
Wow, that's great! Please keep us updated would love to know how things go for you, I ended up with surgery and haven't looked back since however if I flare again I want to know from someone first hand what this treatments like, the best of luck to you!
 
Claire617 said:
Wow, that's great! Please keep us updated would love to know how things go for you, I ended up with surgery and haven't looked back since however if I flare again I want to know from someone first hand what this treatments like, the best of luck to you!
Click to expand...

Claire, I remember reading this and wanting to talk to you a bit more through pm about it since we were interested in the transplant around the same time. I was booted before I could PM you...? Anyways, I had a perferation of my colon during a colonoscopy(the 1 in 1000 people lol) by my GI and still have my temp ileostomy at the moment because of it. I'm having the stem cell transplant as my crohns is still giving me problems. However they are thinking of reversal of the ileostomy post transplant. I will keep you updated - I think it will be rough, but I really think it has less risk and might be easier then the general public seem to imagine. I'll guess I'll finding out soon enough =)
 
ha 1 in 1000 people, that must've been horrible! Yeah in January before I had the surgery, like you said I ticked all the boxes meds weren't working etc etc and I met with the doctor involved with the treatment because he does clinics at my local hospital, however I was apparently too thin for it, my bmi needs to be atleast 18 and I was 14 so there was no way I was guna be able to put that weight on! That was really annoying!
It's like I said to my parents and like you've said I know it's a risk but half the meds i've been on has some risk to them, stem cell treatment isn't actually that new a treatment, and someone has to try these things if it has a close chance of 'cure'. I'll be keeping an eye out for any of your posts :)
 
A friend of mine who had been diagnosed at the age of 12 (she's 22 now) just underwent stem cell treatment about this time last year. She spent a good portion of the last 12 months in the hospital where she had to deal with chemotherapy, pneumonia, H1N1, and then Celiac disease, and obviously it took a huge toll on her.

That said, she had an endoscopy and sigmoidoscopy last month and is now 100% Crohn's free, as in she does not have any symptoms whatsoever. She's not taking any medication and is feeling better than ever. She has to deal with Celiac disease now, but she says it's much more manageable.

So I guess it just comes down to high risk, high reward. I'm new to this disease as well, so I can't really offer anything from my own perspective, but I hope this helps!
 
Looking to hearing more about your journey with this. While I find the process scary I would love to know more about it from someone that actually does it.

Hope it goes great and looking forward to reading more!
 
Claire617 said:
ha 1 in 1000 people, that must've been horrible! Yeah in January before I had the surgery, like you said I ticked all the boxes meds weren't working etc etc and I met with the doctor involved with the treatment because he does clinics at my local hospital, however I was apparently too thin for it, my bmi needs to be atleast 18 and I was 14 so there was no way I was guna be able to put that weight on! That was really annoying!
It's like I said to my parents and like you've said I know it's a risk but half the meds i've been on has some risk to them, stem cell treatment isn't actually that new a treatment, and someone has to try these things if it has a close chance of 'cure'. I'll be keeping an eye out for any of your posts :)
Click to expand...

Grr that's frustrating... My "stem cell buddy" (Great guy who is doing the transplant the same time as me) is only 113lbs and they have accepted him. And you are absolutely correct - bone marrow/stem cell transplants are not a knew form of treatment, they are just to crohn's. Yes there are a few kinks that are being worked out for the better, but with every transplant that goes by the treatment is becoming more solid. The stats themselves already right now for crohn's I consider to be incredible. So sorry you didn't get the chance to partake in your trial :( But atleast you are getting incredible relief from the surgery right :)
 
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CrohnsHobo said:
Looking to hearing more about your journey with this. While I find the process scary I would love to know more about it from someone that actually does it.

Hope it goes great and looking forward to reading more!
Click to expand...

I know you have been a bit skeptical and scared of the thoughts of no immune system buddy - They really do take such good care of you though really and are extremely pre cautious. So I'm here for people like you my brother.

Here ya go

http://www.crohnsforum.com/showthread.php?t=10838
 
Brizzyce said:
A friend of mine who had been diagnosed at the age of 12 (she's 22 now) just underwent stem cell treatment about this time last year. She spent a good portion of the last 12 months in the hospital where she had to deal with chemotherapy, pneumonia, H1N1, and then Celiac disease, and obviously it took a huge toll on her.

That said, she had an endoscopy and sigmoidoscopy last month and is now 100% Crohn's free, as in she does not have any symptoms whatsoever. She's not taking any medication and is feeling better than ever. She has to deal with Celiac disease now, but she says it's much more manageable.

So I guess it just comes down to high risk, high reward. I'm new to this disease as well, so I can't really offer anything from my own perspective, but I hope this helps!
Click to expand...

Now isn't that just incredible!? She had a compromised immune system, had pneumonia, H1N1 had such a restricted diet as Celiacs and they still managed to pull her through and free her of her crohn's... Stories like that give me even more inspiration, and motivation than i already have right now. God bless her.
 
I heard they did do some intestinal transplants.2 out 5 succeeded.After that conculsion they stopped.But its just what heard.
 
All Internet mention of the ASTIC trials seems to have faded in the last year or so.
Does anyone know how they are going?
 
Claire617 said:
Heya, basically I'm trying to find out as much as I can on this subject, I've spent the last year in a flare and now my life is totally diminished, I sit at home all day because if I move my stomach has a go at me.
No drugs are putting me into remission, I have been put on methotrexate injections however the only upside to them if that Im not being sick, well you all know what its like.
Anyway my consultant is one of the doctors involved in the clinical trials in nottingham and I have an appointment with him on thurs he mentioned it to me before but we were trying out Humira back then so it wasnt an issue hoping that would work.
I've looked at the subject as much as I can on the net so before I open that can of worms with him I was just wondering what people think on it?? Would you resort to it?? Also If anyones actually had it??
Click to expand...

I am currently having Stem Cell Therapy(Polychymal) through a clincal trial and doing well...if you meet the requirements I would strongly suggest you give it a try. I am doing great and no side effects at all! Thank you Jesus!
 
Sue-2009 said:
You and me both Mini Cooper!! They need to spend more time and money on research. It angers me that more research isn't done for auto immune problems that have been around for many many years. On the flip side, I am waiting to hear how the brave Stem Cell people will be doing. Don't quit posting. And keep us updated.. Sue
Click to expand...

I am currently getting stem cell infusions and doing great! It feels like a miracle. If you have any questions please let me know.
 
That's great news Janjan. I'm very happy for you!
I'm not sure if people who have had their large bowel removed qualify for the trials...
 
Astic update

Helper said:
All Internet mention of the ASTIC trials seems to have faded in the last year or so.
Does anyone know how they are going?
Click to expand...

The Astic site at Nottingham University states that patient recruitment has now been halted. Word on the grapevine suggests that the initial results are poor and that patients suffered higher than expected side effects
 

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