Hematopoietic stem cell transplantation for Crohns

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

N

Neilfisk

Guest
Hey, how you all doing? Has anyone been offered a BMT to help with your crohns? Iv been on all the meds MTX, AZA, Humria etc and they are'nt working, had bowel resection a few years agao but GI's not keen on going in again. He has said that they will give me 2 more injections of the Humria but next step is a BMT. Sounds very drastic to me but was wondering if anyone has been offered this or even had it done themselves.
Cheers
Neilfisk
 
Hi Neilfisk and welcome to the forum! I have not had this done - but wanted to know if you could elaborate a little on what this procedure would entail? If it is what I think it is, it does seem to be a bit much, but if you have no other options because you have tried them all and have severe, severe disease - what is left?
 
Peaches said:
Hi Neilfisk and welcome to the forum! I have not had this done - but wanted to know if you could elaborate a little on what this procedure would entail? If it is what I think it is, it does seem to be a bit much, but if you have no other options because you have tried them all and have severe, severe disease - what is left?
Click to expand...


Hey Peaches, Thanks for the reply.
Yeah its what you think, bone marrow transplant. Mad eh!! Well thats what I thought anyway. I have been reading on the web that the US and Canada often do this if its the only thing left but it's on trial over here so it's a new one.
Cheers
Neilfisk
 
I definitely wouldn't say it is often done - we have only had one person on this forum who had it done and in reading their blog it seemed quite a task to complete and risky as well. I think he was from Canada. I believe it may still be only in the clinical trial stage here in the US and that is for autologous stem cell transplant. Haven't looked up your hemato version to see what that comes up with.

If you do decide to have this done, we would just love it if you would post your progress here as it seems to be such a new treatment, but a hopeful one. I am sure everyone would be grateful for the information! Good luck!
 
Yes, he was a young man from Ottawa, Canada and found a doctor willing to do it and he is doing great! Yes, very risky and he did get one bad infection but got it under control - the whole story is on here somewhere - sorry I can't remember his name - He had tried everything and nothing was helping him and he had it really bad - I think it is only for the worst cases but YES if you have it done please keep us updated as I believe this is the future treatment for this disease...Thanks for the post
 
Thanks for your posts, I obviously never read the web pages properly, sorry about that. I was under the impression that it was done reguraly in the US. I did read about that person from Canada who managed to find a Dr to do this procedure on him and all the best to him. Sorry again
 
OK, Thanks. Another prob im having is that I have 2 GI consultants in 2 diff hospitals. Long story short my local hospital told me there was nothing wrong with me so I went to another hospital 100 miles from where i live to get a 2nd opinion and they have said i have severe crohns. They have a dedicated crohns ward as my local doesnt, but because i live outwith the other hospitals area they can only treat me with some drugs. I am on Hurmria in my local hospital, and i feel it's not working but they say i have to wait another month to see if it does 'kick in'. I don't think it will!! One hospital says one thing and the other another, I just don't know what to do. I was thinking of going to get a 3rd opinion. What do you think?
 
I'm A bit confused about something tho. I'm actualy doing a stem cell research report as we speak for my biology module of my degree. And So that the body does not reject the stem cells that they put in, they make sure it has your DNA in it so they body knows it is you. I think in the procedure they do for crohns they take your own stem cells from the bonemarrow to use them. (correct me if im wrong)
But, if this disease has some genetic factor in it, then how come we dont still have a problem after we have been given the new stem cells?
x x x x x
 
I was wondering the EXACT same thing LMV! I don't know if we get a "reset" of sorts and maybe it will keep us super quiet for a LOOONG time, or maybe it is a roulette wheel kinda thing if your cells will once again learn the inflammation routine or maybe not? IDK - but it would be fascinating to learn more.

Neil - it is difficult to say - but if it were me, I'd want to stick with a hospital that specializes or actually SEES a lot of Crohn's disease patients. They are the people who would most understand the progression of the disease and the likelihood of your disease being so progressed that you would need something as drastic as a SCT. I mean, if you have already been on all the different medications and none of them seem to phase your disease - what is left? I hate that you are in that situation and really hope they can figure something out for you!!
 
Hi LittleMiss, Yea your right. From what my GI doc tells me 'they take all your bone marrow out, take away the bad parts (he tells me that the bone marrow has a memory and that they take that cells away) away and then put back the bone marrow into you'. It's not a cure because at some point there might be something that triggers a flare up again and then your back to square one. The cells remember that you have inflammation and you get flare ups, but from what he tells me it has worked. So who knows
 
Its a difficult situation to be honest Peaches, the other hospital did a rh hemicolectomy on me and gave me inflixamab but they wont pay for adalimamab but because i live outwith the hospital catchment area. Then I go to my local hospital and they tell me it's in my head, but we will give you adalimamab. I am in a no win situation

Neilfisk
 
Good grief - I see your quandry! How long have you been on the adalimumab? Did you ever try Remicade? Is the other place wanting to do the SCT because they aren't able to try you on the Humira? I'm wondering if the two places can "hold hands" so to speak to get you going in the right direction.

Ugh - healthcare - just what we all NEED to have to worry with having this disease!
 
I have been on humira for the last 2 1/2 months got 160mg then 80mg then 40mg but I don't feel its working plus Im getting awful side affects. Tried the inflixamab aswell but that did nothing, tried MTX and thulidomide. Am on 150mg of AZA have been for the last 10 years. All have not helped. My GI Dr in my local hospital does not agree with me going to the other hospital to see GI Prof. We do not really get on
 
So - how long have you been diagnosed? It is just so weird to me how some of these meds work great for some people and not for others. And every so often you get someone like you - where nothing seems to work. It makes me realize how much science does NOT understand about our disease.
 
I got diagnosed away back in 1999, my dad has it as has my brother and they are both fine. Which really annoys me!!
 
Boy, that is annoying! I always felt like I got dealt the bad cards in the family until my twin got it last year. Kinda wish it was only me though - hate that she has it too.

Sorry to ask so many questions - it is just rare that we get someone on here who is kinda at the end of the treatment rope so to speak. Did none of the meds really work for you over the years, or did you at least have some periods of time that you felt OK? Did prednisone ever work?
 
Thats funny you say that because my twin brother only got diagnosed last year aswell. After my op I think I only had about 1 month were I was fine and dandy but to be honest every day is a struggle. The pain and having to run back and forth to the toilet, I am there at least 20-35 times a day!! Ouch!! I was on prednisone way back at the start for about 2 years but they did nothing to help, they mad me mad. The side affects were horrible but my Dr would'nt take me off them. So I cant take them.
 

Similar threads

J
Stem Cell Transplants Prove Effective for Patients With Severe Crohn’s Disease
Replies
3
Views
1K
Scipio
Scipio
C
42 years Crohns
Replies
6
Views
1K
Crohnie56
C
Luciana
LDN & Stem Cells
Replies
2
Views
820
Luciana
Luciana
Crohn2357
Using Stem Cells To Treat Perianal Fistulas
Replies
3
Views
6K
exit4
exit4
L
Joints swelling after infliximab pls help
Replies
2
Views
2K
Redfox99
R

Latest posts

Back
Top