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Family Surgeon mentioned "Stem cell implantation"

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Posted 9/26/2014 6:40 PM (GMT 0)
While i was talking to him more than a year ago, he mentioned "Stemcell implantation" ( i was in a very bad flare at the time) being an option.

He didn't talk much about it, all i know is rough details of the procedures (see below) and that he already had a Crohn patient which he treated with such method which successfully renewed scar tissues in his colon, and also put him in a long remission after the second procedure.

(he does a lot of research in stem cell field, and previously worked with an orthopedic doctor to grew a new knee cartilage for a patient successfully and many other stem cell related treatments)

Procedures :

- you take some prep meds a few days beforehand
- they numb your belly, and start extracting some fat while you're fully awake, painless he says
- they take like a month or so i am not sure of the period, to work on stem cell culturing i think
- they run you through a colonoscopy like prep, and instead they inject you with the prepared stem cells Enema, and supposedly they close your back end for like 6 hours

and that's it, he also warned me that a person could need multiple procedures like this to get good results, but to my knowledge its not too expensive its almost the same cost of 5 boxes of mesalamine 4g enemas (7 in each ).

I was wondering have anyone heard of a similar procedure ? i couldn't find anything similar, or even discussing the procedure, only general topics like this gut.bmj.com/content/46/6/869.full and the crazy person who went with a complete a multi-million wipe of their immune system years ago.


I told my current GI about this, he told me its a hoax and there is a cancer risk.........

lol as if there isn't one with immunomodulators
Posted 9/26/2014 7:06 PM (GMT 0)
I don't think it is the same thing, but one person is using a bone marrow transplant to cure her Crohn's. She is very desperate though and the procedure has had great results, but the possible side effects of Graft vs. Host disease and Death are worth risking because her condition has gotten so bad and she is at the end of her rope.

You can read more about that here: crohntransplant.wordpress.com/about-me/
Posted 9/26/2014 9:11 PM (GMT 0)

Tunnelvisionary said...
I don't think it is the same thing, but one person is using a bone marrow transplant to cure her Crohn's. She is very desperate though and the procedure has had great results, but the possible side effects of Graft vs. Host disease and Death are worth risking because her condition has gotten so bad and she is at the end of her rope.

You can read more about that here: crohntransplant.wordpress.com/about-me/


this is very interesting, thanks Tunnelvisionary

He also talked about it being safe since they are going to use my own stem cells (Autologous) instead from a different host (Allogeneic), also he did mention that using a different (matching) host will render a better results but more risky, and much more expensive.

Edit: also he stressed upon it being a last card, he was and still anti-surgery eventhough it's his job.
Posted 9/27/2014 5:43 AM (GMT 0)
Never heard of it. I'm skeptical. Is it done in the doctor's office or a hospital? If the office, that would be a huge red flag for me because procedures done in hospitals are reviewed.

Would it be submitted to/covered by insurance? If not, sounds like a way for your doctor to make money on a procedure that an insurance company would never approve (with good reason, for once).

I'd have to see A LOT of published research proving effectiveness before I'd try something like that. And if my GI said it was bunk, even that might not be enough.

The fact that this surgeon is anti-surgery in your case may be because he doesn't do that kind of surgery.

Based on your signature, you seem open to alternative methods. Have you tried curcumin? There is published research showing effectiveness for UC and the side effects are zero. Not saying it works for everyone but I will guarantee that it is a safer choice than the "stem cell" thing.
Posted 9/27/2014 1:34 PM (GMT 0)

kiptyn said...
Never heard of it. I'm skeptical. Is it done in the doctor's office or a hospital? If the office, that would be a huge red flag for me because procedures done in hospitals are reviewed.

Would it be submitted to/covered by insurance? If not, sounds like a way for your doctor to make money on a procedure that an insurance company would never approve (with good reason, for once).

I'd have to see A LOT of published research proving effectiveness before I'd try something like that. And if my GI said it was bunk, even that might not be enough.

The fact that this surgeon is anti-surgery in your case may be because he doesn't do that kind of surgery.

Based on your signature, you seem open to alternative methods. Have you tried curcumin? There is published research showing effectiveness for UC and the side effects are zero. Not saying it works for everyone but I will guarantee that it is a safer choice than the "stem cell" thing.

-Hospital setting under monitoring

-umm, i am not sure about that i am a freelancer (software developer) in Egypt so i don't have private insurance, and public health insurance medicines would have killed me quite some time ago, i even have to smuggle the 4gm mesalamine enemas as we don't even have those.....

- that's why i posted this i couldn't find a lot of info on the subject

- i am not sure why he's anti-surgery he's considered family so i know that he won't attempt to scam me or anything, but i guess he sees other medical alternatives as a viable option ...maybe, he's somehow unconventional i.e when i was flaring badly and rapidly losing weight (i even was underweight to begin with) GI were suggesting Biologics (which is CRAZY expensive) or surgery, he said nope and gave me a "Nandrolone decanoate" injection and asked me to eat a lot specially proteins, later on i was getting my weight back (real weight not water) in no time even with my flare, GI was bit surprised until medicines kicked in and things got better.

- actually "touch wood" , things have finally started to calm down for me after imuran decided to work and the great 4gm mesalamine enemas, after more than a year of brutal suffering.

I haven't actually tried curcumin, even though i do have it in powder form , but i am bit scared of spices as i know they can irritate the colon.
Posted 9/29/2014 12:48 AM (GMT 0)
I didn't know you were in Egypt. I made the unwarranted assumption you were in the US. My bad.

My questions about whether it would be done in the hospital or if it would be covered by insurance were based on the assumption that you were in the US. I don't know how things work in the Egyptian healthcare system so what I said may or may not be relevant.

I'm still skeptical without published research. It's like what I think about weight loss "miracle" cures-if they really worked, the world would know it.
Posted 9/29/2014 2:49 AM (GMT 0)
I'd have risked death for the closest thing to a cure there is.

Biggest regret of my life not asking my GI if I could try this.
Posted 9/29/2014 2:56 AM (GMT 0)

NiceCupOfTea said...
I'd have risked death for the closest thing to a cure there is.

Biggest regret of my life not asking my GI if I could try this.


NCOT,

Have you taken a look at the blog I posted earlier in this thread? Perhaps it might be on interest to you.

Here is some more information about the trial she is participating in: studies.fhcrc.org/cats/

I hope more studies are done on this and come out to be more successful/less risky. I hope they test this out on UC one day, too.
Posted 9/29/2014 3:04 PM (GMT 0)
@kiptyn: Its ok i also presume that most users on healingwell are from the US too, regarding "I'm still skeptical without published research" its not as easy as it sounds when a researchers comes up with a possible solution because i think they have to have enough X number of successful results with patients to think about publishing it and considering UC/Crohn is rare in Egypt with such unconventional treatments it would take a while.

________________

@NiceCupOfTea: I am really sorry, back when he told me about this i was in an immense amount of pain and extremely weak that the idea of turning my pc on sounded like running a marathon, i only had like a few minutes of peace in the entire day spent mostly reading a couple of pages from my eink reader, rest of the day between bed(including meals) & the toilet, if not in the hospital or at the GI office.

But when i got better i kept reading the topics in here for months, but i recently registered in hope that i could maybe even help a single person, it breaks my heart knowing that other people went through what i have and even more everyday....

______

I have the Dr's direct phone number if anyone is interested and wants to call him directly, i don't think he would mind.
Posted 9/29/2014 3:13 PM (GMT 0)
If something magical popped up for UC I don't think the world would automatically know about it. I think it may eventually get out but it would be an uphill battle. There is way too much money made on UC drugs. Don't know how many "True Blood" fans there are but sorta reminds me of how they ended it all. There was a HepV cure, but instead of releasing it, they formulated another form which required a continuous dose lol.
Posted 9/29/2014 10:18 PM (GMT 0)

Tunnelvisionary said...
NCOT,

Have you taken a look at the blog I posted earlier in this thread? Perhaps it might be on interest to you.

Here is some more information about the trial she is participating in: studies.fhcrc.org/cats/

I hope more studies are done on this and come out to be more successful/less risky. I hope they test this out on UC one day, too.

Yeah, I have. It was interesting, but it's too late for me, m8. I've already had my colon taken out. No going back from that. But believe me, if I could go back in time and have a stem cell transplant I'd be getting into the time machine right now. I can't think about this too much, because if I do, I just end up bereft at having lost my only hope for a "cure". **** Crohn's. And above all else, **** surgery. Yeah, maybe it's good for UC, but it hasn't been good for me. It's easy to be an internet hardman (or woman in my case), but I'm being honest when I say I would now willingly run the risk of death for an actual cure.

Urgh! So pissed! skull
Posted 9/30/2014 1:08 AM (GMT 0)

NiceCupOfTea said...

Tunnelvisionary said...
NCOT,

Have you taken a look at the blog I posted earlier in this thread? Perhaps it might be on interest to you.

Here is some more information about the trial she is participating in: studies.fhcrc.org/cats/

I hope more studies are done on this and come out to be more successful/less risky. I hope they test this out on UC one day, too.

Yeah, I have. It was interesting, but it's too late for me, m8. I've already had my colon taken out. No going back from that. But believe me, if I could go back in time and have a stem cell transplant I'd be getting into the time machine right now. I can't think about this too much, because if I do, I just end up bereft at having lost my only hope for a "cure". **** Crohn's. And above all else, **** surgery. Yeah, maybe it's good for UC, but it hasn't been good for me. It's easy to be an internet hardman (or woman in my case), but I'm being honest when I say I would now willingly run the risk of death for an actual cure.

Urgh! So pissed! skull

Actually the bone marrow transplant doesn't require that you've never done surgery. I know it must be difficult to lose your colon, but wouldn't it be at least nice to know you'd no longer have Crohn's or have to risk going through more surgeries in the future? The lady in the blog has no colon and only 1.7 m of intestine left, more surgery would've killed her.

If you're willing to risk it, I would definitely apply to be in that bone marrow transplant study. If no medicine is really helping and the only option in the future is more surgery, I'm sure you'd have a good shot at entering the CATS trial. Since you would be given another person's genes to replace your own for your immune system, the procedure is essentially a cure for Crohn's. You would no longer have the genes that are ultimately causing your immune system to act the way it is. The procedure is risky because you run the risk of severe infection and Graft vs. Host disease but the center that is doing the study is very experienced at mitigating these risks and while allo-HCT is still not a totally safe procedure, it is safer than ever thanks to advancements in science..

Of course, I'm not trying to be pushy. Just thought you might find it relevant.
Posted 9/30/2014 1:44 AM (GMT 0)
It's in Seattle; I live in the UK =/

That said, with my absolute neurosis about the Crohn's coming back, I think you have a valid point. The meds never worked before surgery; don't see any reason why they would suddenly start working really well now. And without something to halt the inflammatory process, I'm convinced there will be more surgery down the line. I used to be the opposite of whatever a hypochondriac is: everything I experienced, I assumed it was nothing serious, that I would never be hospitalised, etc. Kinda naive, looking back, but no doctor mentioned surgery to me. Not even once. (How I came to eventually have surgery is a long and tedious story, but I had to bring it up with my GI, not the other way round.)

Now I feel like I can't take anything for granted. Surgery? Yeah, will almost certainly need that again for something Crohn's-related in the future. Short bowel syndrome? Hopefully never, but with my luck wouldn't entirely rule it out.

Yeah, I've twisted my own arm. I'm gonna see if there are any equivalent trials in the UK; see if I'm eligible; and seriously consider applying if I am.
Posted 9/30/2014 5:01 AM (GMT 0)
The lady in the blog is from Norway, pretty sure. She traveled to Seattle and is living there for a while. So I don't think your location is an exclusion factor for the CATS trial.

The CATS trial website I linked to earlier has a questionnaire. I'd say it would be worth it to fill out, just to see. I almost wish I was at the end of my rope with CD because I would love to be a part of the trial.

I'd say getting UC has completely gotten rid of being a hypochondriac for me, ironically. I used to freak out so bad about so many diseases (that weren't UC) and lo and behold, I got UC. I guess something about being in good health makes you really afraid to lose it, and then when it kinda happens, you're just like meh. At least for me, anyway.
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