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Using Stem Cells To Treat Perianal Fistulas

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Posted 7/23/2019 5:00 PM (GMT -5)
Using Stem Cells To Treat Perianal Fistulas
https://www.crohnsforum.com/threads/using-stem-cells-to-treat-perianal-fistulas.85217//
Posted 7/26/2019 6:44 AM (GMT -5)
Thanks for this. I've twice tried to get in on this study but Health Canada has deemed it unsafe thus far and the studies have been cancelled. My GI has sent a referral to Clevland Clinic but I've yet to hear anything. That was over a month ago. Unsure if they treat them when flaring. Incidentally, I've also been in contact with Qu Biologics but can't more forward until I see my GI at the end of August. Looks like I've failed Stelara after 2 years...
Posted 7/26/2019 3:47 PM (GMT -5)
Have you tried 6mp? I've heard from a doctor that it can help with fistulas. Might be worth discussing adding 6mp to the stelara with your doctor; or maybe adding methotrexate if you're sensitive to thiopurines.

The studies with stem cells on fistulas look quite good. It's approved for fistula treatment in Europe.

Have you tried antibiotics?

Post Edited (xy123) : 7/26/2019 3:04:46 PM (GMT-6)

Posted 7/27/2019 2:49 PM (GMT -5)
I'm on 150mg imuran and I've had repeated and ongoing (sometimes upwards of 5 months) of abx.

Other option to Restore maybe filgotinib.....
Posted 7/27/2019 6:49 PM (GMT -5)
Maybe seeing a new, competent colorectal surgeon who is specialised in Crohn's could be helpful for you.

I remember Canada Mark has used oregano oil for his Crohn's with success. Although he didn't have fistulas, I think taking something like high carvacrol oregano-thyme oil every day could be worth a try, since you want to reduce the microbial load and the oregano oil is capable of doing that I think.

I hope you get well again.
Posted 7/29/2019 12:09 PM (GMT -5)
Hey xy123--

Canada Mark did have a fistula but it didn't bother him. I used oregano oil for a month with this last abscess. Unsure if it did anything but from what I read you can only use it at high doses for 3 weeks at a time. I'm hesitant to start it again given I'm flaring and have significant LQP. Supplements and probiotics really don't seem to help.

I've seen many IBD surgeons and they all dismiss a repair. However, just this morning I had a consult with a new CRS (originally from Europe) who just arrived here. This is the first time in 4 years I've actually had a direct consult for the purposes of a repair. He didn't tell me anything new....that the success rate for repair with CD is low and given I'm flaring now, he wouldn't do it anyway. The success rate for a repair with CD is 30-50%. That's a better success rate than what I've been dealing with. I don't think it's right or in my best interest to continue to have I & D's which is what I said. He's willing to at least do an EUA and give me (I hope) and unbiased opinion once my bowel has settled.

Interestingly, he was involved in the European stem cell studies. The placebo success rate was 37% compared to the stem cells at 52% so it's not the "magic bullet" we were hoping.

His suggestion is the do the stem cell study over any surgical repair if I have that opportunity in Cleveland. He believes Health Canada will continue to postpone the study here for another few years.

I see my GI at the end of August. I'm sure he'll want to do a scope and then we can determine if I should try Restore or filgotinib or even increase the frequency of stelara. This flare isn't bad....I've had much, much worse so I'm sure it's still doing something. My main concern is the LQP.

Thanks for the wishes. Hope you're well.

Post Edited (U B Tough) : 7/29/2019 11:12:47 AM (GMT-6)

Posted 7/31/2019 8:59 PM (GMT -5)
Having had stem cell treatment for a fistula (RVF) as a part of a phase I trial in the U.S., I think there is great potential here. They are still learning a lot about optimal treatment/donor types (I had autologous cells from my self), but the treatment itself is far less invasive and has potential (with the biggest barrier being scaling "production" and reducing costs).

If no response, you don't have the additional scar tissue. If you do, it could be anything from an improvement/reduction in the size to healing.

I'll add I was fortunate to have an insurance provider that considered the clinic conducting the research "in network" (study pays for all experimental portions) and the means to pay for my own travel. I know that's not the same for all, but I do have hope that it will become a viable option for more over the next few years.
Posted 8/1/2019 8:22 AM (GMT -5)
Thanks DC! I’ve wondered how you’ve got on. Any improvement or healing?

I was surprised to learn that they transplant the cells around the tract, not directly in it.

I’m so sorry for what you’ve been through. I have such empathy for you. Fistulas are just pure evil & it’s hard for ppl to understand what’s going on.

Incidentally I used Repa-Gyne when mine re-opened in April. (Only pass gas, no stool). It helped so much. I think the tea tree oil closed it. Purchased it from amazon.
Posted 8/5/2019 7:32 PM (GMT -5)
Thanks, UB. I had partial improvement (mostly based on evaluation under EUA and MRI vs. my symptoms), but I may try again in an upcoming trial with donor cells (which may prove more effective) and direct injection in the tract. Sadly there is no silver bullet so trying some less invasive that is showing comparable or better rates of healing to surgical therapy seems like it's worth it. My ultimate goal is reconnection (still have "temp" ileo) and, while options are few, at least I have a few still.
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