The big one!
I have previously written about my JPouch and how/why it failed, and on the 3rd February 2020, at St Marks Hospital in Harrow UK, it was finally removed. I had full removal and a barbie butt (anus and sphincter muscles etc removed and sewn shut) created with a new permanent end ileostomy.
I kept various video diaries to document my recovery which start at day 4 as I was out cold on pain meds prior to that, however I will recount as best I can from the start.
The night before!
Operation Day
On the day of surgery, I was last on the list as I was having such a major, long operation. I went down to the theatre at 2pm… all went well and at 7pm it was all over! Just 5 hours which is amazing.
My fantastically talented surgeon, Mr Janindra Warusavitarne, carried out my full operation laparoscopically, only entering the body via the old JPouch site and the new stoma site. I have no other wounds.
This is classed as SILS a much better option than open surgery!
During surgery my ovaries were checked as it was feared one was stuck with scar tissue, however it transpired it was not stuck but I did have fairly large ovarian cysts. Janindra popped the right one and was satisfied it was normal cyst fluid and didn’t need further investigation. The left cyst was left as it was not in the way and they didn’t want to cause further complications.
The operation went to plan and I had my new stoma – Fred 2nd– located on the left hand side. My previous temporary stoma 4 years prior on the right side had left a very deep scar and it was felt it would cause leakages if used again.
My first video blog after surgery!
Day 6 and the Barbie Butt!
My first recollection is really on day 6 when, finally I was disconnected from the maze of wires, however, that also meant I was taken off the patient-controlled pain relief button!
I was on Oxycoden as I am allergic to Morphine and was moved to the oral equivalent which included a modified release Oxycoden and Fast acting Oxynorm (oral liquid). I was also on Pregabalin and paracetamol.
I had 3 drains coming from my bottom wound collecting into what was a small version of a stoma bag that sat over the drains. This collected fluid that gathered inside from the wounds left. It was incredibly awkward as it often popped when I tried to sit or lie raised head in bed, it also was itchy and annoying. My catheter was also removed and at first it felt a relief, however I soon realised I had issues with passing urine.
Day 7 Bladder fun!
I had a bladder scan done in the morning which showed I was retaining some urine, however when it was repeated again at 11am, after I went loo, it showed I was holding over 650ml which was not good! My Drs requested a catheter was put back in!
I tried all I could to empty my bladder to avoid the catheter, it is comical now to think back! I stood backwards over the loo, arms braced on the support rail on the wall and tap running… I even trickled water over my privates in an attempt to make me pee… I managed a little, however, in this position, it mostly went down my leg, socks and all over the floor!
It was not until many attempts later and a strong word with the ward from my pouch nurse, that at 6pm my catheter was finally replaced, and I was relieved! Literally!
My pain was not being controlled by the oral meds and I requested the pain team visit! I had an argument with the lady that came as she said I wasn’t allowed what I had been having and would reduce it!
Not the intention when I asked to see her! She also insisted in talking across me, as if I was invisible, with the nurse and ignored me! I was very upset and stressed which just caused more pain!
The outcome was a reduced amount of liquid Oxy and more capsule form. I felt this was crazy as I struggle to absorb medications as it is, but I lost the fight there!
Pain
I felt sharp stabbing pains in my side and stoma left, it radiated right across my abdomen and felt tight and burning when I moved, I couldn’t sit up because of the swelling in my behind. I felt bruised and battered in general and rough, all I wanted to do was sleep.
Come 3am I was woken by the level of pain and decided I needed to change my stoma bag as it was sore and I felt it had leaked around the edge inside, causing my skin to burn.
This was a big mistake! Note to self! DO NOT attempt a bag change half asleep, in a very badly lit room when high on pain meds!
I had forgotten to cover me or the floor! Yup, Fred was wide awake and continued to poop all over my legs, hospital stockings on my feet, floor and even splash the radiator! I was in a right tis-was and had to see the funny side! Eventually I managed to get him under control and stick on a bag, clean up, and return to bed, exhausted!
The next morning, I had a visit from the pouch nurse, and she helped me change and resize the bag hole etc. We noticed a flesh coloured lump/film on one side of the stoma. The nurse convinced me it was normal and called sloth ( as shown in second photo below)… it apparently would move itself and not to pick it off. My stitches were still intact, and the base of the stoma was lumpy and almost had a ring around the base that was bowel but not stoma.
Pain this day was awful and came in 10 second waves of intensity. The pain was up to and around the stoma, it took my breath away, all I could do was hold the stoma firmly as it came and went. I noticed my stoma felt very firm behind it and was raised and extremely swollen still (as shown in first photo above). I had gas built up and as it passed it would ease the severity of pain a little. My output was watery and gassy all day.
The funny side of the pain meds was that I would randomly nod off, mid-sentence, mid game of backgammon, mid phone call… I had no control over it and just felt immensely sleepy.
In my video I mention a strange substance in my catheter tube, I also noticed blood but the Drs were not alarmed and considered it all fine. My bloods were tested daily for infection and were fine. They did show high levels of inflammation, but it was reducing daily as I healed.
The weekend passed and I had several drainage bag changes due to leaks or soreness, my bottom skin was starting to suffer as well from the constant moisture and bags attached. My drain output was approx. 75ml a day so too much to remove drains yet.
I managed a small walk to the corridor with Stuart and by carrying my catheter bag!
A Week in!
I was starting to fell a little better, swelling slightly reduced but the actual stoma was still very swollen, enlarged and bruised. The stoma nurse added a seal to my bag to protect the stoma as it was swollen and changing size.
My catheter was again removed and this time it was all good! No pain in the bladder and I could pass urine well. The drain was also reduced so the Dr decided it was time to remove the 3 drain pipes!
OMG! I will not brush over this or mislead you, it hurt! They had to dig around to find the stitch holding the 3 drains and release them, they then continued to wiggle in circles the drains and woosh! They pulled them out! They were long and weird!
I don’t want to freak anyone out and will say, in hindsight, this lasted a few seconds and was not as painful as other procedures we endure, but not pleasant! Just hold your breath and it will be over!
I now needed to wear a pad and keep the area covered and clean, I was able to use a barrier spray to help the skin and relieve any itching or soreness.
Day 8 and wire free!
I was now mobile and ready to attempt short walks off the ward, until now I was restricted to trips to the loo and back! Stuart assisted me. I found I could only endure about 5-10 minutes before the pain was too much, I also noticed I would get very hot and sweaty fast. All a sign to take it easy.
Walking and being up and about felt amazing and each trip got easier.
We had a lady on the ward that had tested positive for MRSA, The ward was put into isolation and anyone entering had to wear a gown and gloves to reduce contamination. We were all tested.
Day 9
Today I was feeling brighter and the pain was easing up. I decided to look at my bum! It was not as scary as I imagined and was just an open wound, a valley almost that has no mess, no marks and no stitches! I was advised to keep it as an open wound so it could heal from the inside out. It wept fluid as it drained and this varied from blood, watery fluid to a thick creamy discharge.
My pain was managed with fast acting Oxy every 2 hours and I slept a lot still.
Day 10 Hometime!
The Dr woke me at 8 am to say my bloods were stable with no sign of infection and so I could go home!
All canulas and dressings were removed and revealed the damage as seen here!
It took until 7pm to be sorted with discharge details and medications but I was off!
I had a gel cushion and pillow to sit on in the car, so surrounded with blankets etc, I was comfortable for the 2-hour journey!
As I look back on the 10 days, I don’t remember very much, I kept the video diaries and notes so I could share this to help anyone facing similar.
It is not a pleasant procedure and the thought of a stoma is bad enough, let alone a barbie butt. However, I feel free of the bowel symptoms for the first time in over 5 years! Yes, I’m having to eat a basic, bland low fibre diet for now, yes, I am on pain meds and sleep a lot, yes I am house bound and can’t manage far outside. But I am on the road back to me and I can wait to start the final chapter of my journey, living with a stoma names Fred!
Below are two video diaries of days 11 and 12 post op and the photos are of me home at last!
I will write in more details about the actual care and recovery from having a barbie butt and what to really expect. I will also be sharing more about a horrendous experience, since being home, with a complex prolapsed stoma that needed surgery.
I have since swapped from my gel cushion to a Valley Cushion borrowed from my local stoma nurses, its amazing and I am able to sit a lot more each day without risking my scars or splitting the wound.
I hope by reading this, you have gained more insight into this aspect of bowel disease and abdominal/rectal surgery at once.
I hope it answers any questions or concerns you have or just educates on the procedure.
During this journey I had immense support and help from loved ones and online groups. All of which provided priceless and for which I will always be grateful.
The support I offer others is my way of paying it forward.
I welcome your comments and questions and wish you well.
Take care and stay strong!
Andrea aka Stoma Warrior
(previously known as JPouch Warrior)
