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.
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.
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.
This sadly never worked out for me and, after many biologics, therapies and permanent antibiotic treatment. it was removed 2.5 years later!
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.
I addition to this and the walking, I have been joining in with my 13-year-old, 2-3 times a week – to follow an online PE fitness lesson. My children are home due to the closure of schools from the pandemic. My partner is also now working from home, so I have plenty of people to motivate me.
Harry and I have been joining in with Joe Wicks, Body Coach 30 min PE sessions. Now I won’t lie… he’s fab, but man does he push us hard! Squats, Burpees (my modified version of course) crunches (modified so indirect), plank, jogging and so much more…
I ensure I have a suitable hydration drink (my drink of choice is SIS Hydration Tablets in water), I wear my level 2 support belt from Comfizz, or the adjustable support belt from Vanilla Blush (all available on the NHS).
I have also been given, on prescription, a level 3 hernia support belt from Comfizz, but find this too severe for this level of workout. I also worry as this belt has a hole to go over the stoma so it may encourage a prolapse (I have endured this at 3 weeks post opp and it lead me to be admitted to hospital and put under anaesthetic to remedy the problem, so I’m super worried it will reoccur (covered in a separate blog post).
Obviously with such extensive surgery on my Butt, I have had to use special cushions to sit on, I used the Valley Cushion, to avoid separating the buttocks splitting the open wound in any way. I had 3 holes that needed to heal fully and all fluid drainage to stop before I could be sure my bottom was healed.
Yesterday I took the bold step of cycling for the first-time post op! I am not a regular cyclist, but I do enjoy it when I can. I find it strains my elbows so need to strengthen them.
I took the precaution of wearing my padded cycling shorts and lowered my seat a little and I was off!
I was so nervous as I had no idea if I would suffer pain, if it would feel odd to sit on the seat and how I would cope physically.
It was amazing! Admittedly I only went 2.5 miles as it was my first trip, but It was exhilarating to fly down the hill, pain free and full of life! Not something I thought I would dare to try 12 weeks post Barbie Butt; let alone the other healing my body is doing.
My passion is Kayaking and finally, I can see the possibility of returning to it (as soon as we are allowed of course in the UK). I feel positive, strong and have a bounce in my stride that I have not felt for longer than I can remember.
As far as the IBD is concerned, I do not want to jinx this… but its at rest! The bad bits are seemingly all gone and with just the rehabilitation of my digestive system to go, I feel I can finally move on from being sick!
I have a well-behaved stoma that I seem to of managed to get under control with no leaks and little discomfort. I know I have a long way to go to get to my ‘new’ normal way of life but feel confident this can now be achieved painlessly and most importantly, IBD medication free!
My medications now include a variety of vitamins, Amitriptyline, turmeric and CBD for joint pain and just the ongoing management of my other issues.
My diagnosis include; IBD, Mast Cell Activation Syndrome, Asthma, Fibromyalgia, Stress and Ovarian Cysts… amazingly all very well managed and don’t impact my daily life anyway near as much as IBD did.
Life is looking positive for me and I know there will be challenges, obstacles and even possibly some setbacks, but at the moment its good and I am going to soak that up!
I hope by sharing my story and achievements, it comforts others, inspires some and reminds me how very far I have come!
Thank you for the ongoing support and company on my journey.