HealingWell
Search Close Search
☰

Stem Cell Research

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/30/2010 10:33 PM (GMT 0)
anyone ever heard about any advances or recent publications, and or trial tests being done in correlation with Crohn's and UC?
Just curious if we should or are expecting some advances or answers for the diseases we suffer. I'm about at wits end with my UC and am considering surgery.
but don't want to pull the trigger if its too soon. kinda like buying something and watching it go on sale the following week. ;)
Posted 8/30/2010 10:40 PM (GMT 0)
Look up Dr. Burt at Northwestern university. They've had good success with MS and promising results with Crohn's and other AI diseases like Lupus. You might want to contact him - I don't believe they will do this for UC though because there is a surgical "cure" and there is a 1-2% risk of death (I think but you'll have to double check that), which is substantially more than the less than 1% risk associated with scheduled (as opposed to emergency) surgery for UC.
Posted 8/30/2010 10:43 PM (GMT 0)
Surgery is a scary subject. one lady at the infusion clinic had an ostomy bag and her stoma was always getting infected. and people with J-pouch claim to get pouchitis. so no guarantees there either. I would like to be hopeful that surgery would help me and be sucessful. but I felt the same way about Remicade. not ready to give up on it yet. but close......thanks for the info, gonna look it up now!
Posted 8/31/2010 9:02 PM (GMT 0)
Look up Prochymal. There was (maybe still is) a trial for Crohn's. Because we have a surgical "cure," we're going to be the last ones tested for stem cells or any other medications. Treatments spend years in clinical trials and everything, so even if Prochymal works, it'd be many years before it would be FDA approved for Crohn's, and add an extra few more years for UC.
Posted 8/31/2010 10:54 PM (GMT 0)
that's unfortunate, I'll post after my GI appt tomorrow. I suspect that the doc will keep me on Remicade since I've only had two infusions. maybe it will come around. I hope so. and surgery is scary the more I look into it.
Posted 9/1/2010 12:56 AM (GMT 0)
Are you on rectal meds? It took me 4-5 infusions plus the right combo of rectal meds to achieve remission. Don't give up yet!
Posted 9/1/2010 1:05 AM (GMT 0)
I believe prochymal failed in trials or the company putting it out fudged their data and withdrew it or something dodgy like that. unfortunately.
Posted 9/1/2010 1:11 AM (GMT 0)
I've tried Rowasa, and colocort (steriod enema) before I was on oral steroids. didn't get any results from it. I'm gonna give Remicade two more infusions. but I'm backed up bad, not much poop this morning, and blood the past three days. I seemed to be doing better after my first dose. I actually felt well enough to go wakeboarding! I felt alive again for a while. but back to crappy. hopefully its just a fluke.
Posted 9/1/2010 1:12 AM (GMT 0)
Sorry, prochymal is back on. Just looked it up.
http://www.genengnews.com/gen-news-highlights/osiris-restarts-phase-iii-prochymal-trial-in-crohn-disease-following-interim-analysis/81243389/
Posted 9/1/2010 2:10 PM (GMT 0)
killcolitis, any idea of how far the trials for the Dr. Burt's stem cell treatments? I know we'll be the last ones to get it, but I still can't help but to be excited about it. I'd personally take the 2% risk of dying and get stem cell treatment rather than the 1% for surgery.

Edited to add: I just called Dr. Burt's office. Whoever I spoke to said that they do not have any trials for UC. When I asked about trials in the future, she said she wasn't sure and that I should check the internet. shakehead

Post Edited (bookworm21) : 9/1/2010 8:53:50 AM (GMT-6)

Posted 9/2/2010 12:02 PM (GMT 0)
Chef Patrick, how did the GI appt. go?
Posted 9/2/2010 12:23 PM (GMT 0)
Bookworm, I believe you can contact Dr. Burt directly by email. I don't know when trials for UC will start or even if they are in the works, but I think once the procedure goes through trials for more serious diseases (ie. those without a surgical cure) it'll be more likely that you'll be able to have anyone offer it for UC. If you get in touch with him, please let us know what he says.
Posted 9/2/2010 12:24 PM (GMT 0)
well, I don't know why I'm having pain and bloating, or a little bit of blood, but the doc scoped me, and my colon is looking better than it did two months ago. healing. not 100% but much much better, so he wants to keep me on the meds. and very slowly take me off prednisone.they took blood to check on cbc and a few other things. said he'd call me if anything wasn't normal. but to take it easy. so I'm just gonna do that. got another remicade infusion on the 23rd. so I should know by then I guess if I feel like its better or worse, or is turning around towards the worst. might get scoped again shortly after that just to see how healthy the tissue looks compared to today. I think I might start taking Tumeric too. haven't tried that one. how does it work for you?
Posted 9/2/2010 12:46 PM (GMT 0)
killcolitis, I agree--we'll definitely be the last ones getting it. I just wonder that if it's been fairly successful so far, why aren't more doctors doing it? Have you emailed Dr. Burt in the past?
 
Chef Patrick, I started turmeric after being on Remicade for a couple months, so I'm not sure if it has helped. I just like to take it as back-up. I'm glad to know that the colon is healing!
Posted 9/2/2010 6:30 PM (GMT 0)
No I haven't but I understand from others who have undergone treatment from him (for CD) that he does if you have questions. It's worth a shot. I've emailed several major IBD researchers/Drs. and quite a few have responded. I find in time they usually do. Dr. Burt is a pioneer of this treatment. It's offered in Spain and a few other countries as an alternative treatment for CD (as opposed to a treatment for those who have failed all other treatments). I can think of many many reasons why it isn't being done more frequently. Hasn't gone through clinical trials (I believe it is currently going through them now), requires a lot of highly skilled staff, isn't a huge money making drug with pharma backing (not that it's a "natural cure" by any means but it might just be a cure for many).
Posted 9/3/2010 1:56 AM (GMT 0)
there was a show about stem cells on discovery health yesterday. It talked about Adult Stem Cells which are harvested from your own body fat and grown in a lab, with them being from your own body the Dr. on the show said there is no chance for your body to reject the cells. There wasn't anything on the show about IBD a lot of it was about bone growth which they have been successful with. Still it was a very interesting show and with how discovery is it will probably be played several times throughout the week if you would like to watch it.
Posted 9/3/2010 2:56 AM (GMT 0)
Chef Patrick: I'm so happy to hear about your positive scope results!! That's great news. Perhaps knowing that there is an improvement will help put you at ease and on the road to healing. The subconscious mind can do amazing things. Yay for you!
Posted 9/9/2010 1:44 PM (GMT 0)
Bookworm, FYI, I did contact Dr. Burt and received a very helpful reply and further information from him within an hour.
Posted 9/9/2010 3:35 PM (GMT 0)
killcolitis - was it in regards to UC? Mind sharing if it was?
Posted 9/9/2010 4:07 PM (GMT 0)
Yes well it was in regards to a few issues (I've got a few people in my family who are waiting for this to become a mainstream treatment). But my daughter's case is one where the outcome might be CD (as it is more likely with young children initially diagnosed with UC). I've been following Dr. Burt's work for a while and so figured I'd email him a few questions. He responded to all. Basically, he said that they are conducting pediatric stem cell transplants for CD in Montreal (we're in Canada), but like at Northwestern, you must have first failed all other treatments first. They're not going to carry this out for UC any time soon since it's curable, though I didn't ask him that.
Posted 9/9/2010 5:08 PM (GMT 0)
Got it - ty very much.
Posted 9/11/2010 2:00 AM (GMT 0)
killcolitis, you got a direct reply from Dr. Burt?! That's great.

I emailed him as well and received an email from his nurse, who said that they do not have a protocol for UC and to check out their website. When I asked if there would be one in the future, she gave the same reply as before. I had also asked questions about the logistics of the treatment (just out of curiosity), and she just attached a couple articles.

Posted 9/11/2010 3:25 PM (GMT 0)
@Chef Patrick
I've never heard of anyone having an infected stoma. Probably a bacterial infection which is easily treated.
I've had an ostomy for a little over 3 months now and I haven't had any issues.

As for pouchitis I've been told that it is nothing like a flare up.
Posted 9/22/2010 9:07 PM (GMT 0)
well, ever since doc started tapering me off my prednisone I've started to bleed worse and worse by the day. so I have one more remicade infusion this week, and if I don't improve I'm going for surgery. I think I have extinguished all my options. I have not tried Humira but I hear if Remicade doesn't work it won't either. I feel as if I've been on steroid for too long and have become dependent. so I think surgery would help. gonna give VSL3 a try as well. but I am not optimistic.
✚ New Topic ✚ Reply