Reply to "J-pouchers in London"

Thanks for the response.

I was fit and healthy for 33 years then all of a sudden became ill in January 2014.

I managed to get an endoscopy in April 2014 when I was diagnosed with Crohn's disease from the pictures and biopsies taken.

I was first admitted to hospital 2 weeks later in May 2014 where I spent a few weeks in St Peters (hell hole) hospital and ended up on a concoction of drugs , Pred and IMixiflab infusions and I was ok until December 2014. In January 2015 I spoke to my then Crohns nurse and consultant from St Peters ( hell hospital) hospital who put me on azaphioprine and made my infliximab infusions every 6 weeks. 

I had to discontinue Azaphioprine as it made my muscles in my legs tighten and I could hardly walk for 2 days. 

I became so ill that I ended up back as an inpatient at St Peters (hell hole) hospital again. I was put back on steroids among antibiotics and given a loading dose of 4 shots of Humira and sent home after 2 weeks stay.

I stayed at home still ill where I was in bed for 2 weeks shivering but hitting high temperatures. The Humira nurse wouldn't come out to me as she told me that I shouldn't have been put on Humira with the other drugs I was on. ( Thanks St Peters for that!)

After being persuaded many times and not wanting to go back to that place I was rushed back into St Peters where they didn't have a clue what was happening.

i was so ill I couldn't eat. My tongue and throat was swollen.

at first they said It was a cardio problem, then they said it was a water infection and after a long debate and still getting no where I insisted that I be transferred to ST Tomas's Hospital in Westminster under the care of Dr IRving and Anderson who I had previously heard of researching myself.

St Peters nearly killed me and after having a row with the consultant there and the surgeon whom told me I would have to loose my intestine and have no chance of a Future J pouch I was thankfully sent on my way in an ambulance to ST THomas hospital. I was intact suffering from sepsis and put on 3 different antibiotics via drip. I was then put on Steroids, TAcrolimus and Vedolizumab as a last resort as there were no other drugs available and I ended up on insulin from steroid induced diabetes, refused to have surgery until I had exhausted all avenues. Had numerous infusions 

i had blood work done 3 times a day until I became so ill that after 3 months stay trying every avenue and becoming to ill to operate on I had to take the plunge and have my large intestine removed and an ileostomy performed. I had a fantastic team at St Thomas's and can't thank them enough for all they did for me.

That place was like staying in the best private hospital compared to St Peters but unless you've been to more than one hospital you have nothing else to compare them. 

After removing my large intestine the pathology report came back as Ulcerative Colitis which made me viable to have a J pouch. 

I put back on the 3 stone in weight I had lost and feel so well again.

I am living with the ileostomy at present and manage fine other than I don't dive or swim as I used to as I find it an issue with having this bag stuck to me.

i am hoping to go for the first operation in J pouch surgery in January 2017 .I have read lots of bad stories and a few good ones but I honestly feel that If I don't give it a shot I will always think what if....

Also either way I have to have a major op.

if I keep the way I am I will still need op to remove stump they left in and sew up ass!

so.....I've decided to go for the J pouch and if things don't work out I will have to go back to how I am now.

At the time of becoming ill I thought it must of been the protein shakes I was consuming and I was working all hours and going to the gym after work doing to much, running myself into the ground. 

I also have an active job as a self employed Plumber/ Heating engineer so could really not do with all the time of work with being ill.

sorry for rambling on I just thought I would try and explain a bit of my journey!

Thanks for listening 

Anymore feedback most welcome

Good Night

Dean

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