My Story

[shmo]

Hello,

I figured I'd throw my story on here to help paint a picture for those studying the disease.

I was diagnosed when I was 3 with rheumatoid arthritis, and then diagnosed with Crohn's when I was 5. I spent my youth popping sulfasalazine (or rather crushing it and drinking it with apple juice as many youngsters did) and spent a couple times around 10-17 years old on prednisone and 6mp. As I was going through puberty the doctor's were concerned about my weight as I wasn't gaining any so for a couple years I did tube feeding at home. Not the most pleasant experience but as the alternative was surgery, we felt it was the better option. It worked and I started to keep pounds on although never really reaching past 115-120lb.

Soon after Asacol became popular I switched over to that and have been taking 2-6 tablets of 400mg every day ever since. I've had good months/years and bad months/years since the age of 18 (25 now), but for the most part I'd say all has been well considering...up until this year.

An anal abscess began to form at the end of last year and, unfortunately, as I wasn't educated or informed, didn't know what it was or how serious it would soon become. After some tests were done it was discovered that I had two fistulas, one leading to the abscess which was to be drained. That was over two months ago (as well as 25 pounds ago) and I'm still waiting for the wound to heal now.

I'm back on 6mp and preusmably will start Remicade in a couple of months. In the meantime I've also tried to change my diet slightly to be more Crohn's friendly, and I've also been seeing an Osteopath who has worked miracles for getting my bowels back in order.

They say Crohn's is at its worst in people aged 20-30. I hope to any higher being that this has been my due.

 

[Angrybird]

Hello shmo and welcome to the forum, I am glad you have decided to join I am sorry to hear about the troubles you are having at the moment, if you have not already do check out our fistula/abscess sub forum to get some further info/advice from others who have these: http://www.crohnsforum.com/forumdisplay.php?f=76.

I will be keeping fingers crossed that the new meds can sort things for you so you can be feeling better again. Pls keep us updated on how you are getting on.

AB
xx

 

[afidz]

Hello and welcome.
Its hard for me to imagine the life that you have had to lead with having 2 auto immune diseases pretty much your entire life. I read that you are to start Remicade shortly, I dn't know very much about Remicade except for that it is similar to Humira. I know Humira treats Crohn's, Rheumatoid Arthritis and Psoriasis. You might be able to knock out 2 birds with one stone. Keep us updated and I hope you find answers and relief soon

 

[shmo]

I remember the doctor at our local Children's Hospital back when I was young telling me that there was a link to the Arthritis and Crohn's. They generally seem to work together in that when one is worse, it usually means the other is as well. Probably has to do with the inflammation I'd imagine.

Thank you for your welcomes and kind words

I am very hesitant to start Remicade despite the many success stories. I've always thought the fewer drugs the better in the long run...I guess we'll see how it goes.

 

[David]

Hi there and welcome to the community! We appreciate you joining and sharing your story

Is your Crohn's Disease confined to your colon? It doesn't affect your small intestines at all?

I'm curious what the osteopath has done for you and how it changed things?

Again, welcome!

 

[shmo]

It has been a very, very long time since they've had a look, but last checked my Crohn's was where the small and large intestine met.

The osteopath I see is just one of those people that is very good at knowing the body, and knowing how the body works. She will work directly on my guts if needed - sort of massaging, but being more direct and meticulate than that. When I became sick with my fistulas and abscess, she said my intestines felt rigid...hard. She worked on them until they started to feel, as she put it, "juicy". Her purpose was to increase the blood flow to my intestines to help with the absorbtion of nutrients. She wanted to physically seperate the intestines from each other, in essense loosening them up.

The before and after were quite drastic for me. I wasn't in pain before necessarily, but things weren't right. Very loose stools, little relaxation in my torso. One thing that I hadn't realized until she started working with me is that my guts were silent. After a few sessions of her "loosening" me up, my guts started to make noise again. As she put it (and I trust her), the more gurgling the better. My appetite increased, my stools were better, and my guts did feel more "juicy".

Sorry, that was a bit of rambling. It's a bit hard to explain. But it makes my guts feel better and that's always nice.

 

[David]

That's wonderful information, thank you Do you still see your osteopath?

 

[Hobbes650]

..... Is your Crohn's Disease confined to your colon? It doesn't affect your small intestines at all?...

Sadly, nothing about Crohn's disease surpises me anymore. And that's why treatment can be so tricky. I hope things really start to improve. Being sick for so long and still only in your 20's is tough beyond words. Your attitude speaks volumes and certainly provides encouragement for others!

Keep us posted,
Hobbes

 

[shmo]

That's wonderful information, thank you Do you still see your osteopath?

Right now I do.

I had to leave work in March because it became too painful with my abscess (and I was only then discovering what was going on since I'd never had this happen to me before.) When I left work I mostly stuck to the couch or bed as it became increasingly painful to sit, stand or walk. In April I had the surgery to remove the abscess (it became a biggie, so operating room style) and post-surgery I continued to lay down to recover.

What happened was, because of the arthritis, my left hip locked up and I temporarily lost the ability to walk. Everything is connected so with the flare up of my guts came a flare up of my hip joint. The osteopath has helped loosen me up, both in my bowels and in my hip. I walk with a cane now and it's only a matter of time before I'll eventually return back to normal (presumably).

When I was healthy(er) I mostly saw her for my hips as they'd give me more problems than my guts. Maybe a couple of times a month if needed. It was only after the abscess that I discovered she could change my guts from a sack of sand to, well, the juicy coils of meat they should be.

 

[David]

Thank you. I realize I'm just some guy on the internet, but I'd love to talk to your osteopath. That she was able to soften your intestines makes me excited. I've read about the benefits of massage and there have been anecdotes on here of people benefiting from self-massage of their intestines, but hearing a medical professional do it is really exciting to me. I'm not asking you to do it now, but if you one day feel comfortable giving me their name so I might look them up, please PM me. I'm an administrator here and you're welcome to review my post history by going to my profile so you can hopefully determine I'm not as creepy as this request might make me sound

If not, no worries, but I'm always looking for new and exciting ways people here can treat themselves that doesn't have a high risk of side effects.

 

[shmo]

If anyone else is in the greater Vancouver area and is having flare-ups/trouble with Crohn's, I highly recommend her. She's not cheap, but if you can afford it or are covered and you're looking for something to try, I can't recommend it enough. I learned more about how my intestines work with her as well.

www.zoetherapy.com

Edit:
That's one of the great things about the therapy, David, is that there is relief with no side effects. It's not a cure, and as I say above it's not cheap, but it brought my guts back to life. There obviously has to be some element of trust though as you have someone pulling apart your intestines basically (and no, it's not painful)