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What a Difference 7.25 Hours Makes

Jen from UK pic 2Introduction:

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:

NONE!!

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.

colitis medications

all sorts of colitis medications & pills

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.

Medications:

Azathioprine
Budesonide
Pentasa
Loperamide
Omeprazole
Cocodamol
Tramadol
Lglutamine
Probiotics

Now,
Budesonide taper over next 10 days
Paracetamol and tramadol for post surgery pain

written by Jen

submitted in the colitis venting area





18 Responses to “What a Difference 7.25 Hours Makes”

  1. AdamAugust 5, 2013 at 4:39 am #

    Congrats to you Jen!

    It’s so great to hear a success story like yours, and best of luck moving forward with your life and getting back into everything you enjoy!

    -Adam

  2. Jen From UK
    JenAugust 5, 2013 at 7:38 am #

    Thanks Adam :-) I took my last steroid this morning and am only needing paracetamol every so often. I feel amazing! I’ve been into town this morning and my oldest son made my day by telling everyone in the cafe his mum has a barbie and a tummy that works!

    Health to all,
    Jen xxx

  3. DavidAugust 5, 2013 at 7:52 am #

    Another great story about the pros of surgery. So glad it is helping you Jen!!

  4. Jen From UK
    JenAugust 5, 2013 at 7:58 am #

    Thank you and it was barbie bum lol xxx

  5. Tom from Northampton
    TomAugust 5, 2013 at 10:46 am #

    Glad to hear you are doing well Jen and glad I could be of help, it means a lot to be told ive helped in some way :)

    I’m 3 months post op now so if you have any questions, ask away.

    What company provides your bags?

    Make sure you get your prescription medical exemption certificate if you haven’t got it already. Your stoma nurses should be able to sign the application for you.

    Tom

  6. Jen From UK
    JenAugust 5, 2013 at 11:44 am #

    Hi Tom,
    Thank you :-) I will def ask when I need to!
    Amcare provide my bags and I’ve had my initial delivery… They were brilliant and gave me all sorts if freebies and a hold all bag! I’m seeing my gp on Friday and sorting out all the prescription stuff. I am trying out a one piece and 2 piece system at the moment but having to change daily as my laparoscopy wound beneath the stoma is a little red and gunky this morning from the bag constantly annoying it. The nurse says to dress it through the day, air it at night and apply an antibiotic cream twice a day.
    So far I’m definitely loving my new life, its so nice to feel all the toxicity leaving my body and everyone says how much brighter my eyes and skin are already. How are you doing 3 months on?
    Jen xxx

    • Tom from Northampton
      TomAugust 5, 2013 at 11:09 pm #

      I haven’t so far got a bad word to say about the company i use (Charter healthcare) they have been brilliant so im sure Amcare will be just as good. I haven’t tried a two piece system as im changing the bag once a day as if i leave it any longer i get itchy skin. Stoma nurse says everyone is different and i dont have an ill fitting bag so thats fine by me.

      My laparoscopy wounds are luckily out of the way of the adhesive so dont have that problem. My stoma was meant to be two inches further down but they had to bring it up next to my belly button, something to do with how my Small intestine was located on the inside lol.

      Yeh ive lost 2.5 stone (pred weight and a bit more) so everybody comments on that and how my eyes are brighter. Its ironic though, as ive still got a bit of colon left (will be taken out next surgery if i choose the jpouch or not) which UC started attacking and it was on the days i was feeling the worst that people commented on how well i looked lol. Damn Invisible disease, people just dont understand so i just said thanks and tried to smile.

      Tip, if you shower with your bag on (i usually change it in/after a shower) you can dry it quite well with a hair dryer lol.

      Also, it would be worth mentioning to your GP about what multivitamins (water soluble) to take as, we now dont have colons and part of the ileum, we can become defficient in quite a few things so its important to get a lot of Vitamin B1,2, 12 vitamin k etc.

      Good luck and stay in touch

      Stay hydrated (im having a problem with this. Must drink more!)

      Tom

      • Jen From UK
        JenAugust 7, 2013 at 9:45 am #

        Thanks Tom,
        I so hope your remaining colon behaves and you don’t lose too much weight!
        I can go at least 2 days with my bag but I like to be fresh and my lapro wound needs it to be clean so changing most days at the moment. It’s a shame your stoma isn’t where you wanted it but I hope it isn’t too troublesome. My husband has found Ostomy Armour/stomaplex guard that if you watch a YouTube video shows how you can wear belts etc even if your stoma is exactly in that place. I will be getting one when I’ve saved up and can wear my lovely jeans with a top tucked in- I can wear the jeans now but I tried with the bag inside and had my first leak :-/
        I was advised feroglobin b12 liquid multi vitamin and iron by vitabiotics was a good one? £4 something in Boots but I must get better at taking it twice a day lol
        My email is jenjen9982@gmail.com btw
        Stay well and good luck,
        Jen xxx

  7. bevAugust 5, 2013 at 2:07 pm #

    This is such wonderful news, Jen. How happy you must be now!

    Colon removal is truly the ONLY cure for what ails us!!

    All the best to you and your new life.

    :)

    • Jen From UK
      JenAugust 7, 2013 at 9:47 am #

      Thanks Bev drastic but true! Hope the probiotics and lglutamine continue to work their magic. I’m still taking the lglutamine to aid healing and my surgeon said considering the state of my colon it held together really well and my progress since is testament to its powerful work xxx

      • bevAugust 7, 2013 at 9:53 am #

        Good to hear, Jen. That l-glutamine really helps those colon ulcers…and aids in healing after surgery too.

        Cheers
        :)

  8. joannaAugust 5, 2013 at 2:47 pm #

    so great you are doing better!!

    I just got out of the hospital for a week stay. they thought my colon had a micro perforation and wanted to do surgery. I chose high dose iv steroids and azathioprine instead. I am hoping it saves me, but I have a feeling I will be getting surgery pretty soon. I have been following SCD for one year and religiously take probiotics, l glutamine, gelatin, vit d, you name it! nothing will fix my colitis though even though it makes me body healthier.

    I hope your new colon-less body treats you well. you deserve it! no more pharmacy inside your house!

    • Jen From UK
      JenAugust 7, 2013 at 9:28 am #

      Hi Joanna,
      I’m so glad you are home and no perforation- how scary! I’ve been driving today and done my first proper trip out with the kids. I still get tired but I love my ileo- ‘side show Bob’ no more pharmacy and no more only going to the supermarket with loos at the front and back lol small successes and gaining in confidence. I really hope whatever happens your struggles are over soon and you enjoy health and happiness xxx

  9. Joan H
    HopeAugust 5, 2013 at 6:15 pm #

    Congratulations to you, Jen! And thanks for sharing your story and your success! I’m so happy for you and so encouraged by your success and great story! It’s an encouragement and makes me feel like if that becomes an option for me to consider, I can do it if that’s what I need, too. Thank you so much and congrats to you and your family! A whole new life ahead for you all! – Hope

    • Jen From UK
      JenAugust 7, 2013 at 9:24 am #

      Thank you and good luck xxx

  10. colney.kAugust 7, 2013 at 8:35 am #

    Hi jen,thanks fo your stories,here m on my hospital bed waiting for surgery im suppose to get my surgery today but they cancel as ihv fever and wanto first rule out the reason for my headache and fever.

  11. Jen From UK
    JenAugust 7, 2013 at 9:23 am #

    All the best to you Colney.k I hope they can make you feel better asap xxx

  12. StephanieAugust 13, 2013 at 5:33 am #

    I have a bag and see it nothing to be ashamed of. I had mine emergency open surgery so it took about 10 months to fully recover from it unlike some lucky people who have laparascopic I have a 14 inch wound that had about 50 staples in it and it split open at my belly button as a nurse had left a staple in and was gaping and infected for nearly 3 months. took 10 mins for my stoma nurse to pull the staple out and it affected me physically not being able to lie down comfortaby and in too much pain to sit. But you know after you’ve recovered youre no longer in the bathroom all morning.

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