Hyperbaric Oxygen Off-Label Self Trial

Hello all,

I am a 2nd year medical student in Texas who tries to stay up to date on current Ulcerative Colitis research (Left-sided UC diagnosed 2017). I am currently in a flare and am failing entyvio.

There has been some recent research into the use of hyperbaric oxygen therapy (HBOT) in the treatment of hospitalized UC patients. The early data (albeit small trials) looks extremely promising. The results are statistically significant. I do tend to be an optimist, but I really think HBOT could be a potential game-changer in the treatment of UC someday. All of our current therapies rely on immunosuppression to promote mucosal healing. HBOT DIRECTLY stimulates mucosal healing through inducing colonic stem cells.

If you do a Google and PubMed search, you will see extremely positive case reports documenting the use of HBOT in ulcerative colitis.

Imagine a future where if you have a yearly flare, you just go into the chamber for 40 session and are good for a whole year?! I don’t think this therapy is a cure-all. The jury is still out on the long-term efficacy, but I think this therapy could be a DEPENDABLE therapy whenever a flare does arise. I think a lot of my mental anguish with UC comes with the not knowing if a therapy will work or not. And it takes some therapies 12 weeks until you can even assess if it is working!!

Dr. Parambir Dulai is leading the current research in this area. They are starting Phase III trials next year in hospitalized UC patients who are at risk for colectomy. This isn’t some fringe physician or anything. He works at Northwestern.

It seems the treatment protocol is 2.4 ATA for 2 hours daily for 40 treatments. It is a time commitment, but I think best case scenario, it is 80 hours for 325 days of remission (best case). Which I would gladly take. And If it works and I have another flare, I can just say “well, time to go in the chamber again!”

I typically am skeptical of facebook claims as well, but I tracked down a woman who said her 10 year old son was failing remicade and was facing a colectomy. I dont know why someone would take the time to respond to me and lie about her son responding to HBOT. She wasn’t selling me anything, and she seemed extremely honest and open about their experience. They tried HBOT for 2 months, and she reports he has been in remission for 4 years. Now I do believe that outcome is nothing short of a miracle, so I am not expecting that to be the commonplace outcome.

I know this may seem dubious, but I urge you all to do some research into this area. If it is something you have access to and can afford to try, why not give it a shot? It cannot hurt anything. It is very low risk. If you are hospitalized and a colectomy is being discussed, I especially urge you to bring this up to your physician, as this seems the main patient population this is being researched in. It is also being researched in pouchitis.

I luckily found a local physician who was open to me trying this therapy. I will keep you all updated on my results. My first session was yesterday. I am trying not to get my hopes up too high. I wish you all the best.

It is unlikely to be a treatment option for the majority. It also seems to be a relatively short lived effect. In the first trial the outcomes were not very significantly different 12 months after end of treatment.

“The overall proportion of patients who required second-line therapy, either during the index hospitalization or during the 12-month follow-up, was similar between HBOT and sham-treated patients (HBOT 60% vs. sham 88%, p = 0.31).”

The results of the second trial were more positive but follow up was only to 3 months.

Reading around it it seems HBOT may work in part by its positive effect on aryl hydrocarbon receptors.
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc6044055/

Qing Dai/indigo naturalis also has this effect and is widely available and affordable. Orally it can have side effects but compares very favourably to conventional therapy in this respect and in effectiveness. .

From the two clinical trial reports. The quote is from the 2A trial - apologies, I should have provided the source.
https://www.scholars.northwestern.edu/en/publications/hyperbaric-oxygen-therapy-is-well-tolerated-and-effective-for-ulc
The 2B trial refers to 3 month follow up. https://onlinelibrary.wiley.com/doi/abs/10.1111/apt.15984
"Finally, we were able to follow patients out to 3 months after hospitalisation and observed a low 3-month re-hospitalisation and colectomy rate, and that none of the patients who responded to hyperbaric oxygen by study day 3 required re-hospitalisation or colectomy. The expected rate for re-hospitalisation at 3 months is approximately 26% in meta-analyses,15 and 30% for colectomy when looking at the CONSTRUCT trial.8 Therefore, our re-hospitalisation rate of 10% and colectomy rate of 30% in a cohort of patients refractory to multiple biologic and small molecule therapies prior to hospitalisation is clinically meaningful."

The quote is from the full paper. HBOT looks like it could be useful for rescue of extreme cases in hospital but logistically it is unlikely to be available for 40 sessions to many with less severe disease. I also think no one therapy will be the answer but combinations addressing different aspects of the disease may be the best approach. Qing Dai also promotes mucosal healing through AhR/il22 (and possibly other mechanisms) but I think for any of these things to work well conditions have to be favourable.

Cc, I was just about to post the same. I think UBTough was the person here who did these treatments. If I’m not mistaken it was in a Canadian hospital, also using IVIG therapy.

I remember UB Tough doing HBOT for fistulizing crohns disease. I can't remember if it healed the fistula completely or not, it was some time ago. I believe she is on Stelara & doing very well.

Hope it works well for you. If it was available to me I would certainly try it as it seems very safe and beneficial on a number of fronts. I also think the reason sometimes for less promising results in clinical trials is that the focus is on the study treatment only. If it were combined with supporting interventions it might be more successful in the longer term.

There also seems to be possibilities for rectal ozone therapy in UC. If it is valid it would be a more accessible method.
https://bulletin.tomsk.ru/jour/article/view/4695?locale=en_us

Keep us posted on how you make out with this. If you don't mind -- tell us more about the treatments -- how long are they and what happens during a treatment? How far apart is each treatment spaced? One last question (if you don't mind sharing) how much does each treatment cost? I assume they aren't covered by insurance, correct?

Thanks, King. What exactly is the treatment? Do you just sit in a chamber like deep sea divers use?