Hyperbaric Oxygen Therapy

[mdwright]

I've had Crohn's for around 7 years, and through the course of treatment I have failed out of nearly every medicine that my doctor has recommended. Either I never responded to the drug, or the side effects to my kidneys and liver function were too much to keep me on it. The best success I had was with Remicade, and I was in remission for well over a year. Unfortunately, the Remicade stopped being effective for me in the Fall of 2010, and over that time my condition has regressed to as bad (if not worse) than it was before.

I really, REALLY don't want to do any kind of surgery if I can avoid it. I'm 29 years old, newly married, and want to be able to get back to the active lifestyle that I so much enjoyed before I started tanking again. My wife and I met with a guy at a hyperbaric clinic, and he said he had seen great results with Crohn's patients. He seemed very straightforward, but we want to be able to make a decision off of more than just his word before we shell out a big chunk of change here.

If you have ANY experience with hyperbaric treatment for your Crohn's or know someone who has, I would LOVE to hear from you. Thanks for your support!

 

[David]

Greetings and welcome to the forum!

I have yet to meet anyone who I feel legitimately has gone through hyperbaric oxygen therapy and there's definitely some... marketers... around doing unscrupulous things. Hopefully someone finds this thread who HAS been through it so they can give an accurate portrayal of their experience.

Based upon everything you've said, you may be a candidate for stem cell therapy if that interests you at all.

Please keep us updated and I wish you well.

 

[raechel]

mdwright-Did you end up trying HBOT? If so, how did you respond? I am considering this as well. Thanks for any insight.

Raechel

 

[mdwright]

Haven't tried it yet...

Hi Raechel,

Wish I had a better update for you than that! After talking with my father (who is an MD in internal medicine) and my gastroenterologist, both agreed that HBOT would probably help lessen some of the symptoms, but in their opinions the type of inflammation that is caused by Crohn's is different than the type of tissue damage that HBOT is most effective at treating. Neither said it was a bad idea, and it certainly wouldn't hurt, but with our financial position being what it is my wife and I decided that we would hold off on HBOT until either insurance can cover some cost, we hit the lottery, or we just flat-out run out of other options besides surgery.

If you end up doing HBOT, please post into this thread or another, because I would love to hear a first-hand report as well! Best of luck in your treatment plan,

Matt

 

[raechel]

Matt- Thanks so much for replying. From the research I have been doing I am skeptical about its ability to help me as well. I have read it being more useful for anal crohns and things less, internal if you will. I am trying to get approved for a stem cell transplant. I was accepted into the trial, but my insurance won't cover it. In my final appeal denial that I received yesterday they threw in my face that I have not exhausted all options because I have not been on Tysabri, and have not tried HBOT. This is what prompted me to look into HBOT for crohn's because until yesterday I honestly had never even heard of it being used for crohns disease.

It is my understanding that Aetna is willing to pay for HBOT so maybe I will give it a shot. I am concerned about the pressure on my stomach though seeing as even a tighter fitting t-shirt can send me through the roof right now.
I really appreciate your feedback and will post here if I do end up trying it out.

Raechel

 

[mdwright]

Wow, I think it's pretty ironic that they would deny your claim and use HBOT, a therapy in which the jury is still out as far as its helpfulness for IBD patients, as a justification for you "not trying everything." From what I know, there is way more evidence for stem cell therapy inducing remission than HBOT.

As for your concern about the pressure, the HBOT clinician we talked to said that there isn't a reason to do HBOT at a pressure that would be greater than what you'd experience at 30 feet below sea level; I don't remember the exact figures (I want to say 1.2 atmospheres?), but we were assured by both the clinician and my father that the pressures they would do therapy at were not enough to be a concern. I'm sure every clinic is different, so make sure you find out what their pressure number is and if it's higher than that magic number of 30 feet below sea level, I wouldn't mess with it.

 

[raechel]

I know! I think it is ridiculous too. It just really sucks because they waited until the final level of appeal to write that in their denial explanation so its not like I can appeal that now.As if that wasn't on purpose...SO frustrating!
Thanks for the info about the pressure. I actually contacted Aetna yesterday to confirm they would pay for HBOT since they suggested it and it turns out that they won't because it too is "experimental". Go figure! I guess I will just add this to my list of if I suddenly come in to money and nothing else has worked...ughhhh!
Well anyways, thanks for your input! Best of luck to you!

 

[phillycrohns]

You may be right, Raechel, to be concerned about whether or not HBOT would work for Crohn's - given its location is "further up." See my post in the other HBOT thread, where I responded to your message about how I am doing after my treatment--answer is still in remission.

I think that diet is crucial to complimenting HBOT. And I believe in the SCD theory of starving the bad bacteria of their food source. That why I was on the SCD before and during my HBOT treatment. I personally believe that a microbiome that is out of balance is likely the key to all of our diseases. But anyhow, I wish you all the best and hope you get better soon!

Chris

 

[phillycrohns]

I also want to say, HBOT at a hospital facility is prohibitively expensive. But there are private companies that offer the real-deal HBOT (hard shell NOT soft shell) that are FAR FAR less expensive. And you may be able to work out a fee that is MUCH MUCH more affordable. If you really want to try this treatment, then see what you can work out in terms of pricing. I realize it still would not be cheap. I blew through my savings on this treatment--and no I am not wealthy by any means or make a ton of money--I work for a nonprofit. I am just saying that if you really want to try this therapy because you think it might work for you, at least call and speak to the doctor who runs these facilities. THey may be able to help you....

Chris

 

[wchambersnc]

I just started HBOT yesterday. I have been trying to do SCD very unsuccessfully! I did it 4 years ago and it worked wonders but after a year I slowly went back to my old eating habits. Stress this summer started a flare that I kept trying to reel in. I tried Uceris and that helped but as soon as I came off it D came back worse than before. We have an off site HBOT clinic near me. My son went to treat post-concussion syndrome 2 years ago with much success. So I thought I would invest in my health. The Clinic I am going to had one person with Crohn's that had improvement after 3 tmts and continued to do 20 total tmts. It is going to run about $3500 for the tmts but worth it if I can feel better and avoid biologics...they just scare me!