Crohn's Disease Forum » Your Story » Coming to terms with everything............


05-25-2014, 03:35 PM   #1
Badfoot
 
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Location: Calgary, Alberta
Coming to terms with everything............

Hi everyone,

I have written this post a couple of times but kept wimping out and deleting it before hitting the submit button. It has been hard to put my account of my Crohn's journey out there but from what I have seen from lurking for a while, you all seem like a great group of supportive people, so here goes..........

I moved to Canada from the UK five years ago and everything was going great until I started getting sick last summer. I started to get bouts of abdominal pain that ended up with some vomiting. The vomitting would relieve the pain and I would feel fine again. I just put it down to something I ate but it started happening once a month, then twice a month, and by Christmas it was happening about once a week. After a couple of these incidents I decided to get it checked out.

After loads of vists to useless doctors who kept telling me it was just IBS or stress one took me seriously a ordered a stool blood test. After this came back positive I was finally refered to a GI doc and had a colonoscopy. Ulceration was found at the top of my colon but the biopsy results came back negative. My GI doc was 99% sure it was Crohns so we discussed a medication strategy comprising 5-ASA and Entocort. She decided on the milder meds as between the pain/vomiting incidents I was feeling pretty good, with normal bowl movements, no blood, and appetite. She gave me an option to think about the meds until after a constrast ultrasound that was scheduled 2 weeks down the road. I decided to not go on the meds right away as my symptoms didn't seem too bad and the side effects were something I wanted to research.

However last week it all kicked off big time.......I had my constrast ultrasound on monday which identified a stricture caused by scar tissue, active inflamation, an ulcer which was almost full thickness through the bowl wall and a fistula which linked two loops of bowl. I couldn't believe the results, I didn't feel sick enough to have all this stuff going in inside me and I had already convinced myself that my Crohn's was going to be a mild case - no big deal. However I didn't have time to digest the results as I was back in hospital the next day for some knee surgery to fix some cartilage damage caused by a skiing accident.

The narcotics I was given after the surgery gave me the worst constipation I have ever experienced and the straining caused liquid BM to exit from my bladder. I was devastated as it indicated another fistula. So it was off to the ER on saturday which was definitely a low point in my life. Going from being a healthy individual to having IVs inserted in of three of Calgary's hospitals within the space of one week was crazy.

I have just been to see my GI who confirmed I have a very agressive form of the disease. She was like "no more discussion, you are going on meds now". So I am on prednisone, Imuran, and the insurance paperwork is in to get approval for Remicade. I am also waiting so see a surgeon to discuss a bowl resection.

So it has been the crazyiest week ever. After months of tests, doctors visits and waiting, waiting, waiting, everthing is now going a million miles and hour and it is hard to take everyting in. However, I stumbled across this forum full of people that understand what I am going through. It helps to know I am not alone.

Anyway, thanks for listening to my long-winded account,

Kate
05-25-2014, 04:09 PM   #2
Tuff
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Join Date: Feb 2013
Location: Ontario

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Hello Kate, and welcome to the forum. I'm sorry to hear you have the more aggressive form of the disease. Fistulas are not fun to live with. It's good that you finally have a diagnosis and a treatment plan. Your co-ordinator can apply to the manufacturer to see if they will give the loading doses free of charge, if you qualify. Then you wouldn't have to wait so long for treatment. Have you had your vitamin and iron levels checked, or been to a dietician?
I hope it all goes well for you. It gets better!
05-25-2014, 04:41 PM   #3
nogutsnoglory
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Welcome to the forum. Thanks for sharing your story. I'm sorry that you ultimately end up with the crohns diagnosis but hopefully you can start remicade soon.
05-25-2014, 04:43 PM   #4
Daisy123
Senior Member
Hi Kate, you know 30 years on, I have no idea what type mine is. All I know is that you adapt and treatment is so much better now than when I was first diagnosed. Keep your diet very light and avoid fibre with strictures. I have had 7 resections and they really have given me my life back. Feel free to ask me anything, you are welcome to email me.
05-25-2014, 08:32 PM   #5
DJW
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Hi Kate. Welcome. Very sorry to hear you're dealing with all of this. It is a lot to take in. Try and take things a day at a time. Give yourself lots of time to adjust. I've heard great things about remicade. I'm starting that myself in the near future.

Sending you my support. I hope remission comes quickly.
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