02-19-2017, 05:29 PM   #1
Join Date: Feb 2017
Location: london, United Kingdom
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hi never wrote on a forum until tonight i was diagnosed with Crohns nearly 2 years ago but was ill for a long time before that i was actually diaogised with it in my mouth when i was 16 but i refused to let them keep doing more tests after the endoscopy and things naturally started to settle down and they thought it could be gastro enteritis
unfortunately not for long. ironically i was working for a medical device company and was helping IBD patients through their problems with the disease and finding the best solutions for their problems when it came to Stoma care and the best suited ostomy bags for them so if anyone needs advice there I thought i could help.
After growing some balls and being in so much pain i though i would rather be dead then keep living with that amount of pain i was admitted to hospital and all those fun filled scans and cameras through every part of my body confirmed Crohns at this stage i was grateful they found out what is was as i had a good year of back and forth from being asked if i was pregnant to checking it wasn't bowl cancer.
it was then finding the right medication for me as I'm sure you all know just because they find out what it is there is no quick fix i ended up in hospital 3 times after being diagnosed i have ulcers through the colon and a stricture they thought had completely closed luckily it was just inflamed. i was on steroids to start but after months this did not work and they looked into alternatives. while this was happening i always felt guilty for telling people what was wrong with me and if i went out with people who didn't know i felt like i didn't want to tell them but more often then not it would have to come out as i was missing time of work or turning up to work and being sent straight back home having to cancel on friends and family and not even trying when it came to a boyfriend. i was lucky and had very supportive friends and they have not only been there but help make light (i like to joke about my toilet runs and experience.) And my mum auntie and cousin have all been my rock and I'm very lucky to have that. I have also had the absolute twats "OMG you've lost so much weight i wish i had that" or yh your so swollen today like yh thanks i know i look fatter today. also i was very anaemic have been all my life and naturaly very pale so when people point this out on one of my good days saying i must be so ill looking like that i could punch them.
I'm now on humira and inject every other week and have oromorph and tramodole for when the pain hits which thank God is no where near as often. Stress was a big trigger for me and i will be starting a CBT course which i highly recommend and have moved with my dog into a much happier environment and thought why not post and see if i can help anyone else x
02-19-2017, 05:40 PM   #2
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Welcome. Thanks for posting your story.
02-19-2017, 05:54 PM   #3
GI Jane
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Join Date: Jan 2017
Location: Yakima, Washington

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Yep can relate with the "special" people comments. I've had Crohn's since 2004 or 2005 it's a blurr now sorry too many head injury was and such. Stress is definitely a trigger so I just don't eat if I know there is going to be stress.

Getting ready for my first actual surgery guess I've been pretty lucky with only tests and medications for so long. They said my down fall was having a high tolerance to pain, my Tramadol disagrees lol. If I spoke up sooner maybe the strictures and fistula wouldn't have been so bad....such is life.

Our family has the warped humor which makes it easier. My sister has tourettes and humor helps. It's the awkward crickets chirping when others finding things out which are hard.

My eating tiny meals until my surgery is crazy. Feels like that's all I'm doing have a half cup of this or that recently. Funny how the surgeon said I need to eat all the things I've gotten away from over the years because their lack of nutrition. Kind of fun eating Ritz crackers and Cinnamon Toast Crunch. Feel like a kid again.

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