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Stem cell research for fistula?
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Crohn's Disease
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Chitowncrohns
New Member
Joined : Jan 2018
Posts : 11
Posted 6/20/2018 6:38 PM (GMT 0)
Hello,
I've just had a failed advancement flap surgery - my 10th surgery in the last year and a half. I am starting to consider alternative approaches to getting rid of my one/two anal fistulas (they'll know more when they go in next week). Does anyone have any experience with stem cell research/clinical trials? The University of Michigan may have some going on but I'd like to know if anyone has ever partaken.
Thanks!
xy123
Veteran Member
Joined : Feb 2014
Posts : 1137
Posted 6/20/2018 6:41 PM (GMT 0)
/www.crohnsforum.com/showthread.php?t=83469
DCCrohns
Regular Member
Joined : Jul 2011
Posts : 60
Posted 6/22/2018 1:19 AM (GMT 0)
Happy to help how I can. Link provided by xy123 gives some background. I actually just returned a few hours ago from my second trip to Mayo for my stem cell plug placement (earlier this week) for a RVF (had previous surgeries to address anal fistula).
Too early to know anything but the surgeon was pleased after surgery and my post-op day one check-in. I don't think they are enrolling for the study that preceded mine with anal fistulas, but it might be worth reaching out to the study contacts to see what plans are for phase 2 and other trials (contact info for all should be up on clinicaltrials.gov and the Mayo website).
Chitowncrohns
New Member
Joined : Jan 2018
Posts : 11
Posted 6/22/2018 11:32 AM (GMT 0)
Thanks @dccrohns - I met with my GI yesterday and he wants to start me on Remicade instead for now. I have an EUA/seton placement next week so we will go from there....the journey continues!
DCCrohns
Regular Member
Joined : Jul 2011
Posts : 60
Posted 6/22/2018 11:39 AM (GMT 0)
Remicade does have a good track record (sadly I developed an allergy over time). Best of luck, Chitown!
Chitowncrohns
New Member
Joined : Jan 2018
Posts : 11
Posted 6/22/2018 9:00 PM (GMT 0)
Thanks
And same to you as well. Really hoping you get some positive results from the stem cell plug!
Chitowncrohns
New Member
Joined : Jan 2018
Posts : 11
Posted 7/15/2018 9:53 PM (GMT 0)
Actually have a consult with Mayo in a few weeks in Rochester, my current treatment @ Northwestern want to do a stoma and I am not in favor...
DCCrohns
Regular Member
Joined : Jul 2011
Posts : 60
Posted 7/16/2018 9:00 PM (GMT 0)
Ah, who are you seeing at Mayo? I head back there tomorrow for my next post-op check-in.
On the stoma (assuming they are talking temporary ileostomy), it is a big decision and mentally challenging. If you are pursuing surgical repair, it can be the way to give your surgery the best chance of success. I had repairs before and after my ileo, and only the one after the ileo took (albeit it was the most invasive and involved using muscle).
There is no one path that is best for everyone. For me, I was willing to go with more advanced/involved options since I hadn't had success medically or surgically before...and I know I would always wonder "what if?" if I didn't give it a go (and could).
Best to you!
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