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Crohn's Disease
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Posted 4/4/2018 9:35 PM (GMT -5)
I know it's a long-shot, but has anyone participated in a trial to treat their fistula(s) using mesenchymal stem cells (i.e., those harvested from you)?

I've tried it all and am about to start a clinical trial at Mayo using a MSC-coated fistula plug in hopes that it helps me with my RVF (developed after successful surgical treatment of an anal fistula with my gracilis muscle). They've used this therapy on anal fistulas and had promising results, so I am hopeful that this less-invasive approach will make a difference (and allow me to be reconnected, since I'm approaching two years with my "temporary" ileostomy).

Here's to being a guinea pig!
Posted 4/5/2018 1:29 AM (GMT -5)
There was a clinical trial with Prochymal, which is a MSC treatment, some years ago. I don't know what happened with its Crohn's trial, my doctor was hopeful with that treatment. He said to me this could be the closest thing we have for a cure.

/www.clinicaltrials.gov/ct2/show/NCT00482092
osiris.com/OLD/clinical_prochymal_crohns.php
osiris.com/OLD/prod_crohns.php
osiris.com/OLD/pdf/Crohn's_Ph_II_Handout.pdf

I am in a similar situation right now, I have been living with a temporary stoma for two years and I started a new treatment to heal and finally re-connect.

Has your doctor said anything about increased cancer risk in the unused section of the colon (stump)? That's why we can't let that part inactive like this for a long time, so it's either anastomosis or resection for me.

Post Edited (xy123) : 4/5/2018 12:33:52 AM (GMT-6)

Posted 4/5/2018 10:15 AM (GMT -5)
An increased risk has not come up in any of my consults with various doctors and surgeons...but I suppose that's something that happens with a variety of treatments we pursue, such as biologics.
Posted 4/6/2018 3:58 PM (GMT -5)
I was in the Prochymal trial for Crohn's. Not sure it did much to help me.
Posted 4/6/2018 4:07 PM (GMT -5)
Sorry to hear that, Dave123. This trial is targeted at the fistula with a plug infused with millions of stem cells...trying to prompt healing at the site. This (https://newsnetwork.mayoclinic.org/discussion/promising-application-for-stem-cells-crohns-complications/) was the first round, and now they are trying on RVF patients.
Posted 4/11/2018 9:13 AM (GMT -5)
wow! I was just about to post about this! I'm seeing a doc next week about this!

I'm nervous about the process.....

Can you suggest any questions I can ask the surgeon?
I hope there's no seton involved as I'll have to refuse the treatment.

I'm not sure of the status of my fistulas. MRI in Jan showed healing....but it spontaneously opened and drained for 1 night in March. I have on and off pressure pain still.

Thanks DC. We may be in this together!! (Just in different countries!)
Posted 4/11/2018 8:55 PM (GMT -5)
I know the plan for this study/me is for a seton prior to the stem cell-infused plug. I now one of the pre-requisites is having the area as calm/non-inflamed as possible, as well is infection free.

UB, it sounds like a seton, antibiotics or another treatment may be what you need (have dealt with opening and closing before, as well as infections and going on the Cipro/Flagyl combo).

Wishing you luck with the doc and finding a path to healing!
Posted 4/12/2018 4:30 PM (GMT -5)
My biggest fear is that he'll insist on setons, and I'll refuse the study. Had them for 8 weeks last year, spent 6 of those in hospital drugged up on pain pills. Continued to abscess. Pure, unnecessary torture. They went right through the levitor ani muscles .....so setons are a deal breaker.
Posted 4/12/2018 4:35 PM (GMT -5)
Was it a cutting seton? I know those aren't very effective historically and have risks for muscle function. A draining seton could be uncomfortable but shouldn't be so much that it causes constant pain...and definitely shouldn't impact muscles. They also can be adjusted if they are giving you issues usually.
Posted 4/12/2018 4:43 PM (GMT -5)
Draining setons. Through levitor ani muscles. Removed setons and pain/spasms went away. Put it this way I was on 60mg of percocets plus morphine plus breakthroughs daily for 6 weeks. 2 more i & D's with them. Only thing that hospital did was get me addicted to drugs, put me in debt, exhaust my family and of course made me consider assisted suicide. They refused any other alternative. Thankfully, things have been quite except for a blip since. (Hope I didn't speak too soon).

Setons are a deal breaker. Failing this, I hope to travel to Texas as per a recommendation from another member for a FLAP etc.
Posted 4/12/2018 5:03 PM (GMT -5)
U B Tough, have you ever considered starting anti-map (antibiotic combination) therapy? Since you are MAP positive and have been dealing with chronic fistulas, the abx combination might give you permanent relief.

You can also combine the antibiotics with biologics to achieve an even better response.

Combining infliximab, anti-MAP and hyperbaric oxygen therapy for resistant fistulizing Crohn's disease/

There are websites and online communities in which you can learn and ask questions about the anti-map therapy.

Anti-MAP Therapy Support Group
Posted 4/12/2018 5:30 PM (GMT -5)
Thanks xy123---yes I did 40 hyperbaric treatments before setons and it didn't heal me. RVF closed, but then reopened. Continued peri anal even though initially HB seemed to help. I can for sure say it helped with urgency. I believe I wrote extensively about it on the UC side, so if interested I'd suggest reading on it there.

Regarding MAP---I was in a life/death situation this time last year and the same hospital refused me AMAP siting no evidence. It was decided with my GI to try Stelara seeing I was in dire need. Stelara is working wonders but I may need to stop it due to joint pain. I wouldn't say I'm in firm remission but I'm not sure I'll ever be. This is as close to it as I've been in many, many years though. If I had my way, I'd wait on AMAP until the vaccine comes out. But you never know.....depending on what happens with stem cells.
Thank yousmile
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