• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Hi Everyone!

I just found this forum...and thought I would join :) I am semi-new to Crohn's disease but had IBS since I was about 12 or 13 (I am 26 now)

In 2004 (at 22), I moved from Rural Alberta to Victoria, BC. Shortly after that, my little tummy problems were becoming bigger tummy problems. I was sleeping with a hot water bottle almost every night. I was sensitive to almost everything I was eating. I found doctor in town that was accepting new patients...luckily, he suffered from IBS as well, so he understood. He sent me for a couple tests and was concerned about the results. 6 months later...I was at the Gastroenterologist.

He wanted me to have an MRI for diagnosis. It was an 'experimental' thing at the hospital, and I was a good candidate. 2 weeks later, I got the results...I officially had Crohn's Disease...UGH.

He put me on Pentasa, and it did absolutely nothing for me but make me feel sicker...just in a different way. So I stopped taking it, and committed myself to a healthy diet, and exercise plan. It was working perfectly for 2 years. But after a while, I started to slip...and was eating carelessly, and not taking care of myself as well.

Fast forward to mid-October of 2008 - I had a bad cramp in the lower right side of my abdomen...I worked through it for 2 weeks, but it wouldn't go away. My honey moon was in a week...and I was worried. I went to my GP. He was concerned, and sent me to the Emerg here in Victoria to get ultrasound. I honestly thought it was an ovarian cyst...and that I could get it easily taken care of in a week. So on Halloween (of ALL days), I sat in the emergency for EIGHT HOURS...But I finally got a CT Scan...and my 'mild' case of Crohn's was not so mild anymore. I would need surgery asap.

The surgeon explained to me that my intestines looked like 'congealed spaghetti'...interesting analogy, and that I had a fever of 41C (105F)-HOT.

So in the end of it all...I ended up with 18 inches less of my small intestine, 1cm less of my colon, and the valve that connects the two. They also found a golf-ball sized cyst on my right ovary, and hollowed out half of the ovary.

I was in the hospital for 8 days, and sent home to recover for 7 weeks.

Today, just 2 months after the surgery, I am about 80% back to normal, feeling better than I have since I was 12 years old...it's really amazing. I am on Imuran now, taking 3 pills a day. I still find that I am VERY sensitive to certain foods, and my trigger foods are different than they were before the surgery. Weird. But trying to manage this new lifestyle, and I am really looking forward to researching these boards a little bit more.

Thanks for listening, if you made it this far...that was LONG!
 

GoJohnnyGo

One Badass Dude
Howdy Daisy, another western Canadian here...

I have been 19 years diagnosed. I had a pretty similar operation (minus ovaries, naturally).

One of the best pieces of advice I can give to start a food diary and jot down everything you eat, what your pain was like, and how your bowel movements were. After a while, you start seeing patterns of cause and effect developing.

Good luck managing your Crohn's and glad to hear you're feeling better.
 
Sounds like you've had a long road. Hopefully you can keep the crohn's
in control now that you have had surgery and are on meds. Lots of great
information here. Welcome and keep us posted on your progress!
 
Welcome daisy_dueller, I am in agreeance with you on the pentasa, it did nothing for me as well and also made me feel sicker in a different sort of way that I cann't explain. I didnt like the feeling after taking it.

Sincerely and Respectfully, Gary
 
Pen said:
Hi there, a female Crohnie from Canada, welcome to the forum. You were brave to have a MRI, I have had crohns 30 years and dx 16 and never had a MRI... you'd have to put me out first, very claustrophic. Hope you find some friends here.
I was totally okay with it...I got to listen to Frank Sinatra, and I just didn't open my eyes the whole time. Plus...the doc that was doing it was reeeeaaaalllllyyy cute, and had a french accent...so it made it that much easier. He sat with me for a half hour before while I drank the chalky crap (whatever it's called)...it was a good day :) :lol:
 
F

furiousrose

Guest
I'm an island girl too... I am so happy to have so many great dr's and help available here. They treat me like I have the patience of a saint for what I have been through... but I understand the medical system with all its wait lists and under minding.
Did anyone find that the pentasa made them more emotional? I am not sure if its the drug, or the stress of what is going on... maybe even the relief of being on a path to understanding what I go through, and finding others who understand and have the same stories as me.... but I believe i am mostly made of stone... I dont deal well with emotions, and I feel like they are taking over.
I just feel like I am getting to a point where all I want is a really big hug, and a good cry. Just looking for the right person to let myself break down to.
As for MRI's.... I have only had one, and it was for a shoulder injury... piece of cake, i got to listen to Garbage in mine. But I had metal anchors put into my shoulder 4yrs ago, and now the MRI isnt an option for me.
Maybe when we re-do the small bowel follow through, it wont get messed up this time.
I think that dealing everyday with this disease is harder then any test that is required. We can get through
 
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