hyperbaric oxygen therapy

New Topic Locked Topic Printable Version
34 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

dms40
Regular Member


Date Joined Oct 2009
Total Posts : 37
   Posted 6/10/2010 9:11 AM (GMT -7)   
I'm wondering if anyone has successfully reached/maintained remission using hyperbaric therapy. 
We used HBOT last fall to help heal my 16 yr old son's fistula,  during that time we saw his CRP and ESR markers fall to a normal range, and he was feeling very well / eating well, gaining weight etc.    He is on SCD and LDN, but in December/january his markers rose and a recent MRI showed inflammation in the terminal illeum.  His LDN was compounded incorrectly with lactose and we have fixed that and his markers are almost normal again, but he has never felt as well as he did while doing HBOT. 
We are thinking of purchasing a home HBOT to maintain remission  and I'm curious if anyone has heard anything or tried this?
 

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/10/2010 3:33 PM (GMT -7)   
I've never heard of it as a Crohn's therapy, dms. How does it work?
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


dms40
Regular Member


Date Joined Oct 2009
Total Posts : 37
   Posted 6/10/2010 4:07 PM (GMT -7)   

 

There are many trials, journal reports etc of it healing peri-anal fistulas, and it has many, many studies of it lowering inflammation.    I live in Canada and did HBOT in Vancouver, BC, but the Dr. I have been consulting with is in California (and one in New Orleans).  They have said that HBOT will lower the inflammation but may or may not control the symptoms (nausea, diarrhea etc) of Crohn's, he has also said that he has sold many chambers to Crohn's patients to help with maintaining remission.  We all know what a frustrating disease Crohn's can be, what works for one may not work for another. 

My son is fairly asymptomatic, and at this time does not have many of the typical Crohn's symptoms, so we are not worried so much about controlling symptoms as we are about lowering inflammation, and getting him to put on some weight and gain a few inches in height.    While he did HBOT he gained 9 pounds in 4 weeks and had NO crohn's symptoms at all, a blood test taken at the end of the 4 weeks showed very low inflammatory markers.  
 
Also, it did heal his main fistula, another one came on after that, but that one had been developing before we started HBOT - as indicated by an MRI done in July 09.  A second MRI done this past May shows the first fistula is gone, and the second has a very short drain tract and is almost gone. 
 
That's our experience with HBOT, and I'm interested in hearing if anyone else has ever tried it. 

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 6/10/2010 4:59 PM (GMT -7)   
i have heard of this and i want to try it but i bet my insurance wont cover it. i havent been able to find anyone in san diego who does this.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


ozonehole
Veteran Member


Date Joined Dec 2006
Total Posts : 559
   Posted 6/10/2010 11:11 PM (GMT -7)   
As usual, Wikipedia has an informative page on this subject:

http://en.wikipedia.org/wiki/Hyperbaric_medicine

I did a little googling to see what they would cost if you wanted to buy an oxygen chamber. Not cheap - looks like prices start at US$10,000. And you still have to buy oxygen:

http://www.drmedicalequipment.com/hyperbaric-oxygen-chamber-solace-210.php

http://www.drmedicalequipment.com/hyperbaric-oxygen-chamber-vitaeris-320.php

I wonder what it would take to actually build your own?

cheers,
Robert
Crohn's since 1988
3 resections


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 6/11/2010 7:00 AM (GMT -7)   
THANK YOU! I've heard of it a couple of times speculating on its possible value for Crohn's disease but this is the first I've read of anyone who has actually been able to undergo hyperbaric oxygen therapy.
My computer says I need to upgrade my brain to be compatible with its new software.


dms40
Regular Member


Date Joined Oct 2009
Total Posts : 37
   Posted 6/11/2010 8:33 AM (GMT -7)   
With a home hyperbaric unit you do not need to buy oxygen, you purchase an oxygen concentrator specifically for use with a hyperbaric chamber and it will take the air from the room and concentrate it to about 93 - 96% oxygen, you breathe this concentrated air through a mask. 
 
To purchase a hyperbaric unit, concentrator, connectors, masks, frame, everything you need to get going it will cost about $9000 US, to bring it into Canada with duty, exchange,  and GST it would be just over $10,000.   Unfortunately there are no guarantees that it will do the job, so the best bet is to go to a clinic and do some sessions to see if it will benefit you before investing in a chamber.  In Canada we payed around $100 per session, from what I understand it's over double that in the US, In Alberta it MAY be covered by medical (depending on your Dr.), but because Crohn's is considered an off label use it is not covered by insurance.  We were able to claim our expenses back on our income tax though. 
 
Because we had such good success with it last fall, the Dr's I have spoken with are suggesting that our son is a good candidate to be maintained with Hyperbaric, and really the chamber is supposed to last about 15 years, $10,000 is not that big of a price to pay if it works.   If not, I guess we can always sell it on E-bay or Craigslist, they are becoming very popular for families with autistic members. 
We have decided to go ahead and purchase one - this has not been a quick decision for us, we have been tossing it around for the last 6 months or so.  If anyone is interested I can post every once in a while and let you know how our son is doing.
 
ozonehole, I had to laugh at building your own - my dad is a retired dairy farmer with an old steel milk tank that he's always trying to figure out how to convert into a hyperbaric unit!!
Crazyharry, I'm quite sure insurance won't cover it, we are working with a Dr. just outside of San Francisco, he seems very knowledgeable - if you want his info I can pm it to you.   Also Dr. Paul Harch's office in New Orleans had lots of information for me, he was an ER Dr. and now focuses just on hyperbaric, and has a clinic, has written a book, etc.

dms40
Regular Member


Date Joined Oct 2009
Total Posts : 37
   Posted 6/11/2010 8:52 AM (GMT -7)   
One more thing, just for interests sake, when trying to heal a fistula with HBOT,  all the trials have been done at 2.0 - 2.5 Atomospheric pressure,  wound healing is best done at a high pressure, where as inflammation is controlled at all pressures BUT you have to be breathing higher than 90% oxygen.  Most HBOT centres will start you off at 20 - 40 sessions, we went twice a day for the first 20 sessions, and then once a day after that, it's a big time commitment.  My son went for 50 sessions in all.
 
 Home hyperbaric units can only be purchased at 1.3 ATA (atmospheric pressure)  in the US and up to 1.7 ATA internationally.  If you purchase a hyperbaric unit without an oxygen concentrator you would only be breathing 24% oxygen (21% would be what we normally breathe).   
I have done a ton of research on this, so if anyone has any questions re HBOT I can try to answer them. 

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 6/11/2010 4:25 PM (GMT -7)   
dms40 this is very interesting and I would like to follow how this works for your family. Please continue to post how it goes for you, I'm sure many of us would be interested.I live in Canada too so maybe I could come over to play in it!


Male, 55 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Entocort, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk,  Imuran and Prednisone in the past.


dms40
Regular Member


Date Joined Oct 2009
Total Posts : 37
   Posted 6/11/2010 9:59 PM (GMT -7)   
Sure Grandpato2, I take it we're both in the same end of the country?  I live an hour out of Vancouver.
 
Here's some interesting reading on Hyperbaric and Crohn's
 

mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 6/11/2010 10:27 PM (GMT -7)   
wow- never heard about it for crohn's...i know michael jackson used to sleep in one!
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently off Pred.  still taking Asacol.  Just had 1st Remicade infusion a week and a half ago
In the middle of a bad flare now for a year...lost almost 30 lbs. -- gained most of it back now.


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 6/12/2010 12:53 AM (GMT -7)   
dms40 Yup Surrey at guildford.
Male, 55 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Entocort, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk,  Imuran and Prednisone in the past.


Escalador
Regular Member


Date Joined Jul 2009
Total Posts : 103
   Posted 6/12/2010 4:23 AM (GMT -7)   
in Croatia, its covered by our national insurance although still many GI's are reluctant to prescribe it
I've heard of a lot of people with Crohns here that said that it helped them a lot

staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 6/28/2010 6:41 PM (GMT -7)   
dms40,
Thanks for all this info! I actually have my first appt tomorrow. I am happy to have this info before I go in with all my questions. I am just recently off of Humira and Immuran due to severe shingles which led to a hospital visit! Now the CD has kicked in quite hard. I don't want to go back on any biologics if I can keep from it so I am 2 weeks into LDN and begin my 3mg dosage tonight. So, I thought maybe HBOT would be a good thing to go along with it. I need hope at this time so any good that anyone knows of HBOT I would really appreciate!
36 y/o Female
Diagnosed with CD 1993

Currently taking Asacol, B-12, Folic Acid, Probiotic, Fish Oil, LDN

Past meds: Humira, Immuran, Robinul, Flagyl, Cipro, Prednisone, Bentyl,


dms40
Regular Member


Date Joined Oct 2009
Total Posts : 37
   Posted 6/28/2010 7:36 PM (GMT -7)   
staci100 good luck with the LDN, I hope it's the drug that works for you!  I hope you are able to do HBOT with it - would you try and get it Dr. prescribed (at a hospital) or do it at a private clinic?   Where abouts are you located?
 
We received our HBOT and O2 concentrator last Wednesday, my son has been in it twice a day since then, yesterday am was the first time since last November that he did not wake up and immediately have to head off to the bathroom, hopefully this is a sign of good things to continue.  We do not expect any real significant changes as he is basically already in remission, but a couple of things that could be improved on:  1) urgency in the morning upon waking.  2) less acidic bowel movements  3)  last fistula healed up 4)  a bit more variety of foods that agree with him. 

staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 6/28/2010 8:51 PM (GMT -7)   
I'm in KY and there is a Dr. who has been giving the HBOT for quite some time now. He has 2 and treats lots of kids with autism and of course many other problems. There is no way I could get it dr. prescribed at a hospital (atleast I can't imagine anyone around here being open to the idea for CD). I don't know why I wouldn't be able to do it with LDN but we'll see tomorrow.
36 y/o Female
Diagnosed with CD 1993

Currently taking Asacol, B-12, Folic Acid, Probiotic, Fish Oil, LDN

Past meds: Humira, Immuran, Robinul, Flagyl, Cipro, Prednisone, Bentyl,


dms40
Regular Member


Date Joined Oct 2009
Total Posts : 37
   Posted 6/28/2010 10:30 PM (GMT -7)   
My son started LDN and HBOT at the same time last August and felt the best ever on this combo - that's why we're trying it again.
Good luck at your appointment, please report back and let us know how it goes. I know when I brought it up with our GI he really was against it and basically said it doesn't work, I believe most Dr's feel this way because it's tough to commit the hours into it that you need to to make it work, plus I think just a lack of knowledge about it at the GI level.

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 6/28/2010 11:35 PM (GMT -7)   
Great for you if it works, could be the start of something usefull for us. I was kidding about playing in it by the way.
Male, 55 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since May, 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. In the past, 5-asa Salofalk, Asacol, Entocort,  Imuran and Prednisone.


staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 6/29/2010 7:42 AM (GMT -7)   
dms40, I've got another question for you. When you posted that I should try to get HBOT in a hospital or clinic....is it dangerous or is it just that whoever administers it should be knowledgeable about it???
36 y/o Female
Diagnosed with CD 1993

Currently taking Asacol, B-12, Folic Acid, Probiotic, Fish Oil, LDN

Past meds: Humira, Immuran, Robinul, Flagyl, Cipro, Prednisone, Bentyl,


dms40
Regular Member


Date Joined Oct 2009
Total Posts : 37
   Posted 6/29/2010 8:15 AM (GMT -7)   
HBOT is very safe, the reason I asked about a hospital is because if it's prescribed by a Dr and you get it done at a hospital your insurance might pick up the cost,  I was glad that my son had gone for sessions in a clinic because we knew exactly what was "normal" as you pressurize and depressurize the chamber, but it's certainly not hard.  No clinic will guarantee results, and you might find the clinic that you go to may not have much knowledge of treating Crohn's with HBOT, it is much more common for it to be used for autism, strokes, brain damage etc. 
 
Grandpato2 you're welcome to come and take a look at it - I'm at the other end of the valley in Chilliwack. 

staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 6/29/2010 9:48 AM (GMT -7)   
Okay, thanks just wondering.  This dr. really believes in his HBOT for many things.  I am getting ready to go and am very anxious to see what he says.
36 y/o Female
Diagnosed with CD 1993

Currently taking Asacol, B-12, Folic Acid, Probiotic, Fish Oil, LDN

Past meds: Humira, Immuran, Robinul, Flagyl, Cipro, Prednisone, Bentyl,


cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1272
   Posted 6/29/2010 4:47 PM (GMT -7)   
Staci100 - I am also in KY, do you mind if I ask where in KY you are at? Where the clinic is at? If you don't want to post it on here I have my email linked if you would PM me any info I would appreciate it. I think we are at similar points, I just stopped Humira and getting ready to start LDN.
Diagnosed with Crohn's in 1998, father has UC we were diagnosed at the same age.

Currently on 15 mg Prednisone, 4g Sulfasalzine, VSL#3, B complex, Calcium, Magnesium, D3 and Passion Flower. Previously on Remicade, just stopped Humira after 9 months, wasn't working.

No surgeries so far.


staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 6/29/2010 5:03 PM (GMT -7)   
Well, had my first session and loved it. Didn't know if I could get in that thing or not but it was just fine. Liked the dr. also!
36 y/o Female
Diagnosed with CD 1993

Currently taking Asacol, B-12, Folic Acid, Probiotic, Fish Oil, LDN

Past meds: Humira, Immuran, Robinul, Flagyl, Cipro, Prednisone, Bentyl,


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 6/30/2010 2:47 AM (GMT -7)   
Dms40 thanks for the offer but I'm familiar with them as I worked in the diving industry for a short while in my 20's.
Male, 55 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since May, 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. In the past, 5-asa Salofalk, Asacol, Entocort,  Imuran and Prednisone.


Peace08
Regular Member


Date Joined Sep 2008
Total Posts : 28
   Posted 7/5/2010 3:47 PM (GMT -7)   
I wish you all the best, reading this thread has got me a little hopeful for some relief, does anyone know if they do HBOT in london for crohn's?
New Topic Locked Topic Printable Version
34 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Sunday, December 04, 2016 3:34 PM (GMT -7)
There are a total of 2,732,719 posts in 301,047 threads.
View Active Threads


Who's Online
This forum has 151202 registered members. Please welcome our newest member, Ed Ski.
358 Guest(s), 4 Registered Member(s) are currently online.  Details
mtm3461, Gear, MauiViv, BKelly


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer