12 Wks On - My Amazing Update Following JPouch Excision, Barbie Butt & Permanent Ileostomy Stoma!

I never dared to let myself dream how well my recovery could go as previous operations had been so challenging and this was the biggest surgery of all.

I did not imagine I would be able to do half of the things I have achieved in the first 12 weeks. My recovery has been the fastest and most positive to date and I am hopeful again for what my future may bring.

My surgical history

I had my surgery in one operation at St Marks Hospital in Harrow, UK on the 3rd February 2020, performed by the amazingly talented team led by my surgeon Janindra Warusavitarne.


https://www.stomawarrior.com/post/failed-jpouch-removal-barbie-butt-and-permanent-ileostomy-stoma-all-by-laparoscopic-surgery-in-one


https://www.stomawarrior.com/post/barbie-butt-what-to-expect-my-journey-of-recovery-from-proctectomy-surgery

I am diagnosed as having Indeterminate Colitis (previously thought to be Crohns) following temporary Ileostomy surgery in 2016 - where I had my complete Colon removed and tested. - at Brighton University Hospital performed by Dr Clark.

https://www.stomawarrior.com/post/what-is-an-ileostomy-stoma-aka-fred-and-how-did-it-work-for-me-in-terms-you-can-understand


I later went on to have an internal JPouch created and connected at once, laparoscopically, in August 2017 by Janindra Warusavitarne at St Mark’s Hospital in Harrow.

https://www.stomawarrior.com/post/jpouch-surgery-before-during-and-after-my-story-one-stage-surgery-creation-connection-in-one


This sadly never worked out for me and, after many biologics, therapies and permanent antibiotic treatment. it was removed 2.5 years later!

https://www.stomawarrior.com/post/the-end-of-my-jpouch-journey-why-it-failed-and-what-now

That was all 12 weeks ago now and I have covered my surgery, early recovery and detailed the Barbie Butt operation in the separate blogs linked above.


Disclaimer; This is my journey and I am not making recommendations or giving medical advice, just sharing what works with me. Please check with a medial professional before trying anything I mention.

So where am I now?


You will see from the photos that I have come a very long way, but it has not happened over night!




My recovery started with gentle walking, just 5-10 mins a day, 1km if I could manage it in weeks 4-5 post op, this has now developed into me walking 5km a day! Every day, and at a good pace, not a meander, but a stride to work me out.

I was been signed off to recover for this time, due to return after 3 months in May, however, that was interrupted on the 20th March 2020 when the world went into chaos and shut down due to a global pandemic known as the Corona Virus – COVID 19.


I am now ‘shielding’ as advised by the government as I am identified as severe risk of developing complications due to my Asthma, more specifically due to the steroid inhaler I take for it, should I become infected with Covid 19


This is actually refreshing for me… its always been IBD that has made me vulnerable and held me back so its actually ironic, now that’s settled… something else raises the bar!

This has just pushed me even further with the determination to fight back and get fit and healthy to be in the best place I can, in case the worse happens and I get ill.

I was under the guidance of my stoma nurse at 4 weeks when I was diagnosed (visually)as having a parastomal hernia! I was gutted… I knew they would not operate on it as my stoma is already re-sited on the left due to previous scaring.

My surgeon will perform scans etc when the world returns to some normality when the COVID 19 is under control, until then I manage myself to stay safe and exercise appropriately.

I still have Fibromyalgia as a result of the disease and that has been an issue since surgery, and I have found it worsening. I believe this may be related to inactivity for a while and lack of the gym but have to be careful to work out effectively but safely for my hernia.

My Rheumatologist has recommended I try Tai Chi, this is to help my joints and strengthen my body without risking my stomach.

I have been using this to stretch and relieve pain and hope to develop my skills further in classes as soon as its possible again.