Crohn's Disease & Ulcerative Colitis Support Group

Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...

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Crohns Allogenic Transplant study

Chelpie
Chelpie
So about a year ago I heard about a trial where they discovered a possible cure to Crohns disease as they found this out from treating cancer patients who also have crohns and after the treatment they were crohns free. This only takes place in Seattle WA and would consist of chemotherapy and radiation and then a bone marrow transplant. I decided to contact them and sent my medical history over thinking nothing would come out of it but I'm just looking into options as I am despret. After living with Crohns now for close to 14 years I have never reached remission even after having resections done. My GI doctor is telling me im pretty much out of options because ive exhausted pretty much every option and nothing has worked. The other day I got a surprising call from washington telling me I meet all the criteria to recieve this treatment as they only pick 20 and there are many things you would need to have been trough to even qualify . After researching it I am a little hesitant considering the risks and that it is still just a trial. I would be in the hospital in quarintine then at home for five months after. I do realize how big of a deal this is and that it is not fun but the only reason i'm considering it is because I will try everything. The past 14 years of my life have been painful and miserable and I cant even live a normal life. In my mind i have hope and want to try it but then I'm also hesitant because of the risks and such and what if it doesn't work for some reason and my crohns comes back. I was just wondering if anyone has heard of this or known any one who has gone through such a treatment? Is this a terrible idea to even consider?
AdventureEvryDay
AdventureEvryDay
No treatment is a terrible idea to consider. When you have been sick so long and have exhausted all your options then there is nothing sweeter than hope. You have been earned a very important and invaluable opportunity and I say go for it. Sounds like you have done the research, know the positives and negatives and you understand the risks and rewards intimately.
I searched for years for some relief and discovered fecal transplants a few years ago, nothing as intense as what you are considering but a huge ray of hope for me. It worked wonders for myself and don't regret taking the leap.
I wish you all the best with whatever you decide. You know what is best for you so have confidence in your decision and never look back. Good luck. Charlie
rmb
rmb
I just want to reach out and say whatever you do, you have our support. I agree with Charlie that when you've exhausted all options and then this opportunity presents itself, you have to wonder if it's calling you.
bart4u
bart4u
Please do some more research about this therapy. Talk with a number of GI doctors and get their opinion. I think I mentioned to you to at least be seen at the Mayo Clinic. They are the number one place to go with complicated Crohns issues. If I were in your shoes I would see them first and consult their opinion on your condition and on this new therapy. I wish you the best and I do hope you will feel better soon.
deleted_user
deleted_user
IDK if this will be helpful or not, but I have some experience with bone marrow transplants..my dd is a cancer survivor who has had 2 bone marrow transplants, one at 8 months old, one at 2. I can tell you in the briefest terms this is a big deal. The chemo is given to you over a number of days to knock down your immunity and you will lose your hair and vomit-sometimes a lot, if it is as intense as hers, and may need a central line placed, as well as blood transfusions more than once. After your counts are at zero (for her it was 14 days of chemo) then you get the transplant. The marrow transplant itself is no biggie as it is in a bag that hangs and goes in like any other blood product. Then the waiting starts for your counts (white blood cell and leukocytes) to come up. There is a significant risk of infection while your counts are down, so how far down they need them to go and for how long should be at the top of your qs list for these docs. Infections with low counts can be very serious, even life threatening..I don't mean to scare you out of any treatment as I can't even imagine what you've been going through having no relief from this for 14 years, but I wanted to be honest with you what to expect. Good luck! Even though the 2 transplant my dd went through were so so hard, she wouldn't be alive today without them. If you have any other q's just ask. HUGS!
sleeplover
sleeplover
If you want to do it, to for it. I know what it's like to be desperate. Sometimes being sick makes me so sad that I wish I wasn't alive anymore. I feel like I have nothing to lose. If you are willing to take the risk, do it and try to get better.
Chelpie
Chelpie
I understand that this is not a fun thing to go through. It was the first time i felt hope or had a good feeling about finally beating this terrible disease. I can't remember what it feels like to feel normal and not in pain and discomfort but that is also why i don't know what to do about this opportunity I have been given. I do not want to make this choice just because im sick of being sick. I need to look at this objectively as well. I really feel like this is right for me but my family feels different. they look at the risks and say its not worth it but ultimately its my choice...i'm the only one who knows what ive had to go through to get to the point where i am not to even consider such a dangerous decision. im torn. listen to them or my heart that is filled with hope? i dont know
rmb
rmb
I wish we could tell you what to do. It has to come from you, and you alone, you know. This is disease is so lonely in every way, shape and form, and this is a perfect example of why and how.

These are things I'd ask myself if I were in your position:

--Will I regret it if I don't do it?

-- Am I in a good mental and emotional place right now to make a rational decision for myself?

--Will I have some kind of emotional support during the treatment? ( Even if family doesn't want you to do this, will they be there for you if you do? )

--Can I live with any potential consequences?

How you answer these may give you peace of mind that you're doing the right thing, whatever you decide.
ashley906
ashley906
You guys are all amazing.... Do I tell you enough.

I haven't told Dale this yet but he recommended his GI for me to see who runs the inflammatory bowel disease center at UCLA and he was amazing! He in seconds figured out how to solve a major problem I as having in one appointment.

I have never been as sick as you are and I am so sorry you are suffering so much. If you can come down to UCLA in LA to see Dr. Cole he is not that backed up, also the mayo clinic or even USF in San Francisco could be your 2nd to last option before jumping into the clinical trial.

I also think Rachelle's questions are amazing too to ask yourself. Seattle is a major state, so I am sure the MD's treating you are not incompetent, but sometimes when MD's dedicate their lives to Crohn's disease they see the toughest cases and know how to solve them.

In the mean time, hang in there! I am so sorry you are suffering and I too am here to support any and all decisions you make!
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