31 year old mum of 2 boys (1 and 4) in the UK, who has missed out on lots of fun things this past year. My highlights have been sword fighting whilst sat on the loo entertaining a bored preschooler and filming my babies first steps from the loo :-) before UC I loved going walking in the countryside and eating out with friends. Since my diagnosis I’ve taken up more home hobbies like, sewing and gardening.
Some more about me:
I used to be a bit of party animal, always the last one dancing and the first one to suggest a night out or social gathering. I love art and try my hand at graphic drawing on the iPad. My family come first and I look forward to getting my confidence and independence back.
Symptoms of Colitis:
What a Difference 7.25 Hours Makes
Some of you may remember my original story about being diagnosed in August 2012 with mod-severe UC past the mid transverse colon. They stopped there for fear of rupturing my colon.
I was immediately put on 40mg of prednisone and mesren, and in December after 3 failed pred tapers they changed me to Pentasa. In January they added azathioprine In march there was no change but prednisone was wreaking havoc on my mind and body so they swapped me to the steroid budesonide equivalent dose to 20 mg of prednisone. And doubled the azathioprine. I followed the scd for the majority of 9 months with no relief. I tried l glutamine and religiously took a probiotic. I tried evoo but I was either sick or on the loo immediately after.
My symptoms were still 20-30 bloody watery BM a day if I didn’t take 8 loperamide and codein too. The azathioprine made me sick every day so I had to add 2 different antiemetic drugs to the mix. I had some good days where I’d have 6-10 BMs but the blood, urgency and pain never went. I lost my mum in October 2012 to colorectal cancer and asked my GI about surgery. He was very relieved and did an immediate referral. Within the month I was scoped and met my surgeon on the 12th July. Only 10 days late on Monday the 22nd they performed a panproctocolectomy with end ileostomy. It took 7.35 hours and was all done laparoscopically. It’s 6 days since my surgery and I am home with my boys, only waking a max of once in the night for painkillers and feeling healthier than I have in 14 months!
Thanks to a fellow I have UC follower I have had great support in making my decision and adjusting to my new life! Thank you Beverley and to Tom too for being so supportive on Beverley’s surgery soon post.
My surgeon said he didn’t want to wait more than 14 days as my bloods were so bad and had been for 12 months and yesterday when I left the hospital they were already in normal ranges!
I no longer have a butt to be probed and could not be happier :-)
My family and friends are thrilled for me as I’ve gone from being introverted and sick daily, to healthy and relaxed in 6 days. I understand not everyone would choose surgery until they were forced to, but for me and my life it was the smart decision.
Budesonide taper over next 10 days
Paracetamol and tramadol for post surgery pain
written by Jen
submitted in the colitis venting area