Hi my name is Beverley (or Bev, I don’t mind :-) ) I am a 30 year old married mother of four from Newcastle upon Tyne, England.
Some more about me:
I have been married for 10 years & have 2 boys (aged 14 & 6) & 8 year old twin girls. I started having problems & was referred to my gastroenterologist in 2001 & finally after 7 long years of being told i had IBS in Jan 2008 I was diagnosed with Pancolitis….Yey!!!
Toilet 5/10 times a day, urgency, pain, (no blood or mucus tho… 4 now)
I have finally finished my battle with colitis….. I’m not sure who the winner is??! Hopefully me!
I 1st experienced symptoms (the blood, diarrhea & pain) in 2001 (although nowhere near as bad as things got last year.) I spent years back and forwards having colonoscopies, flexible sigmoidoscopies, white blood cell scans ect and it always seemed to get missed, i was told i had IBS & at 1 point a GP actually told me (his actual words…) I was ‘barbecuing my insides through smoking!!’
Eventually in Jan 2008 I got my diagnosis.. Pancolitis… in a way i was relieved because i finally knew what was wrong (i am sure somewhere in my notes back then it will say hypochondriac!) then reality hit, & oh it hit hard!
Living with Pancolitis has overtook my life, i sometimes feel like i don’t even live it, i just exist.
between Jan 2008 & jan 2012 I had 7 flare ups, all of which involved the usual, prednisolone yey! Some flare ups lasted weeks, some months but eventually oral steroids + enemas & foam alongside my usual balsalazide seemed to do the trick, that was until june 2012.
I knew i was in a flare up & hadn’t been well for weeks, but tried to plod on (as we do) using enemas, foam ect & eventually ended up admitted to hospital on IV steroids for a week, i was home less than 2 weeks on oral steroids then got readmitted as steroid resistant & put on a trial drug… Ciclosporin.
I probably would have agreed to anything at that point but OMG!! the side effects were unreal! I ended up on the sick for 4 months & although my bowels eventually settled it was a really difficult time.
After finishing the trial I was started on Azathioprine alongside the Balsalazide & having a low immune system, i get every bug going as well as dealing with the usual day to day struggles with colitis. It wasn’t really until i sat & read all of the side effects of everything i’d been taking (the ciclosporin being toxic & the Azathioprine being listed as a human carcogen) that i seriously thought about surgery. I decided to write a list of pro’s & con’s, the pro’s list filled an A4 side of paper & the con’s list filled 3 lines!
I am sick of being a slave to colitis, sick of saying I’m sorry but mammy can’t do that, my tummy’s being naughty again’ to my kids.
I’m sick of taking tablets & I’m sick of being ill.
SO…. I met my surgeon last week & I am now waiting for a date for my op, a permenant ileostomy. Hopefully I will know by friday & look forward to a toilet free future :-)
Don’t get me wrong I am terrified of the actual op & the recovery process but surely I & my family will have a better quality of life with an ostomy.
The first thing my kids want to do is go to the beach for fish and chips without mam having to worry about running to the toilet, that in itself keeps me positive, thats how much me getting better means to them, a simple trip to the beach :-)
The first thing I am excited to do is go camping with the hubby and kids!! I cant wait :-)
So fingers crossed I will hear soon, I wish i could just wake up tomorrow with the bag & miss the op bit out but one last bit of pain will be worth the freedom :-)
I would love to hear from anyone with any advice after an ileostomy & also send my love and best wishes to all of you fellow sufferers xxx
Balsalazide 750mg x 8 per day
prednisolone (lots of times)
ciclosporin (3 month trial)
hydrocortisone (IV steroids)
written by Beverley
submitted in the colitis venting area