Pleased to meet you

[sophie]

pleased to meet you

Hello everyone,

I have been dipping in and out of this forum for a couple of weeks now and I have finally taken the plunge and joined, so hi.

I got diagnosed with Crohn's 16 years ago and since then i have been on pretty much every drug there is. I have also had 2 resections, 1 gall bladder removal and at least 10 procedures for perianal Crohn's.

At the moment I am in the middle of a nasty perianal flare, i had surgery at the beginning of October where the plan was to insert a seton. However, whilst I was in the recovery room the surgeon came to see me to say that there was too much active disease and that my medical consultant had been called in to have a look and apparently she said there was no more she could do for me medically so i would need to have a proctectomy....that's when I hit the internet to try to find stories of others who had dealt with this and I found Crohn's Forum which i have found to be a great comfort to see how others have been through similar (and worse) and come out the other side.

Anyway, it turns out that my consultant did not say that there was no more she could do for me. (thanks Mr Surgeon!!) We are going to give weekly Humira injections a go, I was on fortnightly injections which were amazing and kept me in remission for over 2 years , so i am hoping that the weekly dose will kick it back into remission.

I am also about to start hyperbaric oxygen therapy which has shown to be really beneficial for those with perianal Crohn's. I dont start it for another week but i will let you know how it goes.

Well that was my first post, sorry its all a bit disjointed and I hope to meet some of you here soon.

 

[Jessi]

Hello Sophie and welcome to the family. I'm really happy that you decided to join in.

I'm sorry about your current flare. But I'm glad that they're letting you give it another shot before surgery. It's hard to type with my fingers crossed. I'm hoping for the best for you.

Check out our Humira forum. http://www.crohnsforum.com/forumdisplay.php?f=59
We also have a great place for people going through surgeries. http://www.crohnsforum.com/forumdisplay.php?f=71

Again, welcome. Make yourself at home, and I hope you stick around for a long time to come. You will find loads of support here. :hug:

 

[xJillx]

Hi there Sophie and welcome! I am sorry you are having such issues with your Crohn's. Is that you one the horse? It must not be too comfy horseback riding when you are in a flare. Ouch!

I have never heard of hyperbaric oxygen therapy. Please do share about how this works. Whatever it is, I hope it works for you, Sophie!!

 

[David]

Greetings Sophie, a most hearty welcome to you

Please do indeed keep us updated with the hyperbaric therapy. Was this something you found on your own or did your doctor bring up the idea?

I wish you well!

 

[sophie]

Hello :ybiggrin:

Yes Jill that is me on my horse (Jazzy) and I haven't been able to ride him for nearly 3 months, sitting on a chair is struggle enough at the moment

I am starting the hyperbaric oxygen therapy next Monday. The idea to use it came from my Dad as he used to make the chambers 10 or so years ago so knows some of the science behind it. We mentioned it to my consultant at St. Marks in London and she seemed happy for me to give it a go. There is only minimal evidence on the internet about the efficacy of this form of treatment for crohn's but all of the evidence I have found has shown positive outcomes, especially for those with perianal Crohn's which is my biggest problem at the moment.

The therapy involves being pressurised in a chamber (the one i am going to use seats 8 people) to the equivalent of 33 feet (or 2 ata). Once pressurised i will have to wear a hood which will deliver a 100% oxygen supply for me to breathe. Apparently breathing pure oxygen under pressure enables oxygen to be carried to dying tissues (such as my fistulas) and allows them to heal. There is also evidence that it causes an increase in stem sell production and it can kill anaerobic bacteria and it reduces inflammation.

It all sounds a bit good to be believed but from what I have read I am certainly willing to give it a go. The biggest downside is the ammount of time it is going to take. I have spoken to experts at Dundee University and another hospital that has been working wih crohn's patients and oxygen therapy. They recommend at least 20 sessions which will be run 5 days a week and each session will take an hour and a half...add into the fact that it is a 40 minute journey for me to get to the chamber I am invesing a lot of time in this.

The cost is £16/session

I will let you know how i get on and when i can figure out how to post links i will post the information i have been reading.

Good health to you all

Sophie x

 

[robbo87]

Hi sophie, good luck with the therapy, it sounds very interesting so i look forward to reading how you get on!

 

[xJillx]

Jazzy is beautiful!

Thanks for explaining this therapy. I never heard about it. Once you start, consider starting a thread in the Treatment forum and keep us posted on your progress. I am sure many others, including me, would be interested in how it works for you.

Good luck!

 

[Lisa]

Welcome to the forum - always glad to meet another horse-lover (I have 3 myself)....

I have heard good things about hyperbaric chamber therapy - it is used sometimes for wound healing, also for burn patients - as was already stated, he extra-oxygeneated blood helps to heal....

Hope you keep us updated on how that goes - and good luck with the Humira too!

 

[rygon]

welcome to the forum, the oxygen thing sounds pretty interesting. Hope that and the humira makes a difference for you.

btw posting links is easy, just copy and paste the link here and it should make it a clicky automatically (as long as it has www. or http:// at the front of it) so this website will be http://crohnsforum.com or www.crohnsforum.com