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One hell of a ride!

I have been suffering with IBD symptoms for many years, my earliest memory of it was at the age if 18, I went to sit an exam at college and began violently throwing up with excruciating stomach pains. I was rushed to hospital =, given pain killers and that was the end of that. I constantly was in and out of the doctors only to be told that I was stressed and had IBS. Upon seeing one locum doctor and a doctor in A&E, both were convinced that I had IBD and sent letters to my GP who ignored them both and told me that IBS and IBD were the same thing. I eventually went off to university to study law, hoping that it really was stress and that the change of environment would help.

I ended up going from 10 stone 3 to 7 stone from September to December. I was so ill and anaemic that I ended up deferring my studies and returning home. Returning home was such a battle, I felt like a failure as I did not know what was wrong. My father accused me of not wanting to do anything with my life and I was severely depressed. I contemplated taking my life several times.

It wasn't until May 2015 that I eventually got to see a gastroenterologist. I had only just reached home for the appointment when he rang to tell me to pack a bag and come back to the hospital.
It was found that I had ascites (abnormal fluid build up in my abdomen) that had to be drained. My muscles were wasting away and I had multiple organ failure. I was six stone and placed on TPN for 24 hours.

I remained in hospital till the 23rd of July where I was transferred to St Marks Hospital for a double balloon enteroscopy to open up some of the strictures I had. It was there that I was diagnosed with Crohns.

Due to inflammation, the dilation was unsuccessful and I was immediately placed on steroids and Humira.
I was relieved for my diagnosis as it meant that this was not just "all in my head" I returned to university in September optimistic but ended up back in hospital in November and spent the rest of the term at home. Azathioprine was added to the mix but I then had to come off of it as it resulted in elevated liver function tests.

I enjoyed a lovely new years in The Netherlands and reluctantly visited my doctor on my return who advised that I return to the hospital. I spent a week in hospital and two weeks out before I was admitted again.

I was put on TPN once again. I was tachychardic and doctors could not find out why so decided to operate. I had a exploratory laparotomy on the 16th Feb (My 22nd birthday!!) and woke up to find two stomas.
I had 23 strictures from the jejunum down so the safest thing to do was to defunction me. I have 30cm of small bowel and a jejnuostomy. I also have an ileostomy that acts as a muccus fistula.
Due to the small length of bowel, I am on TPN 16 hours a day seven days a week, I also have additional saline every other day.
I had to leave university once more as I was told that I will need further surgery in September and I do not wish for it to interrupt my studies.

Thank you so much for taking the time to read my story and please feel free to ask any questions!

sending hugs
 

Trysha

Moderator
Staff member
That is quite a horror story jk...I am surprised you did not look for a better GP...but now maybe it's better the devil you know.....
Hopefully you will be helped to steer a new course into better health in the near future.
St Marks is a very good hospital and renowned for GI diagnosis and treatment
Feel better soon
Hugs
Trysha
 
Hi Trysha,
You are right, I now wonder why I did not seek another GP. I think I was just convinced that it was all in my head as that is all I heard from the doctor/family so I just tried to get on with it.

I hope you are well!

Sending hugs!
 

Trysha

Moderator
Staff member
Hi jk
I think you should continue your studies regardless of illness.
You may not be able to attend formal classes because of your time being somewhat fragmented with illness and treatments but you may be able to draw up some kind of curriculum with the help of university tutors....have you had a think about it?
Worth a try ..........
Don't let illness rob you of future possibilities........follow in the footsteps of Stephen Hawking...a remarkable example to us all ....
Never give up....never give in....
Cheers!
Trysha
 
Hi jk
I think you should continue your studies regardless of illness.
You may not be able to attend formal classes because of your time being somewhat fragmented with illness and treatments but you may be able to draw up some kind of curriculum with the help of university tutors....have you had a think about it?
Worth a try ..........
Don't let illness rob you of future possibilities........follow in the footsteps of Stephen Hawking...a remarkable example to us all ....
Never give up....never give in....
Cheers!
Trysha
Maybe you could do some classes.online.
 
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