JPouch Surgery! Before, during and after! My Story! One stage surgery, creation & connection in one!
Updated: Jan 31, 2019
SILS (Single Incision Laparoscopic Surgery)/TATME (Trans Anal Total Mesorectal Excision) completion proctectomy and formation of J Ileo Pouch, closure of Ileostomy.
I have been diagnosed with Indeterminate Colitis (IC) and due to continued illness despite all available medications and interventions, my Colon was removed in Feb 2016 at Brighton University Hospital in the UK. I had a Subtotal colectomy via laparoscopic surgery with just one major incision made in the abdomen and several small laparoscopic incisions above, and formation of Ileo Anal Stoma (ileostomy stoma)
Following this I continued to suffer chronic inflammation and ulcers in my dysfunctional rectum, therefore I needed to have the next step as soon as I could, I was on the waiting list at Brighton for 14 months, however, it was not looking likely to be any time soon, my stoma nurse recommended I could get referred to another hospital. She gave me information on 2 top surgeons she had knowledge of and I contacted St Marks Hospital in Harrow, Middlesex, UK. After researching many surgeons, I elected to be referred by my GP to Mr Janindra Warusavitarne B Med FRACS PhD, Consultant Colorectal Surgeon.
I met with Dr Warusavitarne at the end of May 2018 and after several meetings and examinations, was booked into surgery for stage 2 of my JPouch formation, this was planned to be a temporary loop ileostomy and JPouch formation, However, we discussed that, as I had had my previous surgery with minimal intrusive openings, I would hopefully have minimal scar tissue or adhesion's. He suggested that it may be possible, if I agreed, to have the final stages done in 1 step, skipping the temporary loop stoma and going straight to formation and connection of the JPouch in one.
This was an extremely exciting yet scary option, it was a very new procedure and, in fact, Dr Warusavitarne was the founder of the pioneering technique to perform single stage surgery via a single point of entry, laparoscopic and via the rectum with just incisions for drainage to be made externally. I would eventually be one of the first to have this technique. This is technically known as SILS (Single Incision Laparoscopic Surgery)/TATME (Trans Anal Total Mesorectal Excision) completion proctectomy and formation of J Ileo Pouch, closure of Ileostomy.
I was booked into for the 11th August 2018 with a pre-op appointment a few weeks prior.
The pre-op appointment was extremely informative and reassuring. I had bloods and other tests carried out and they went through where, who, how and when things would happen on admission and care after.
It was the day prior to surgery and my partner and I traveled the 2 hour drive to Harrow in preparation of the early start the following morning, we stayed in a local hotel, this would also be home for Stuart for the next week so he can be close to visit me and help me recover.
I had packed meticulously, I had made small bags of each item I may need, it seemed a little over organised to some, but for me was reassuring to know I had whatever I may need, clothes, choices of underwear, comfortable clothing, things that would work for either a loop stoma or closure wound. It gave me peace of mind to know Stuart could bring in what ever was relevant depending on how the operation went.
That night I couldn’t sleep, I was anxious and suffered chronic palpitations and panic attacks, it didn’t help that I found the hotel room very claustrophobic as it had no full opening windows. The morning of the surgery we headed to the ward as advised and I was prepared for the op. I was to be first in and it was thought surgery would last between 4-7 hours depending on the outcome, as the surgery progresses the Dr would assess and make the decision as to what stage I was going to have!
All I remember is that I desperately didn’t want to wake up with a stoma bag! I didn’t want loop stoma, I had heard so may issues with leakage etc due to the fact they are shallow and close to the body compared to the temporary stoma I had. I was also extremely anxious as I had such a terrible reaction to medications after my first surgery and was still suffering PTSD from that.
I went down and after just 5 hours I was in recovery! I remember so clearly looking down and seeing a wound dressing, NO BAG! A huge wave of relief fell over me! I knew I had a huge recovery ahead of me but potentially this was my final surgery and the relief was immense!
I spent several hours in and out of consciousness, my body was exhausted, I needed sleep, Stuart was at my side and I rested, I was on a decent dose of Oxycodone via drip and it managed the pain well.
The next day or so is a bit of a blur, I had my pain managed so well on the Oxy and with its immediate effect, I was comfortable. I had a catheter in my bladder and initially in my bowel.
It took around 2 days for my bowel to fully wake up, I was now on Fredric Salmon ward, this is a specialist ward for Bowel surgery, they are focussed in this field, as is the complete hospital, therefore the nurses and Drs are extremely sympathetic to the recovery process and the needs of each patient.
I was able to start moving around on the 3rd day and able to get to the bathroom alone to pass my first stools in 18 months! I could even (and often) pass wind, albeit only on the toilet as I discovered there was not, as yet, any way to distinguish between gas and stool…
I also found I could not pass urine without passing stool, this scared me as I feared I had no control, this, I was to discover, was something I would learn over time and I can now chose what and when I do.
I was tender and swollen underneath; my anus was healing with stitches and inflammation from the dilation during surgery to create my JPouch. I was advised much of my surgery was performed via my anus which explained why I was so sore, that said it was managed with pain relief. I maintained the Oxy drip for the first 5-6 days and found I slept much of the time, this was giving my body time to heal and was needed. I was having a minimal diet at first of soft, easy digested foods such as rice pudding, porridge, chicken, rice etc. my appetite was so small at this stage which worked well. I found the food I ate passed through my system extremely fast, within hours.
I was going to the toilet up to 20 times initially for the first few days and several times at night, this was possibly driven by me as I was so worried about leakage and as I was so tender, the feeling of stool in my new pouch gave me urgency. I could already feel the urge though and hold it to the toilet.
My bottom was very sore and tender, I was given a barrier cream by the IBD nurses. They visited daily on ward to endure I was coping and answer my questions.
On the 8th morning I was ready to go home, I was now being managed on tablet form of Oxycodone as well as OxyContin which is a modified release pain medication, it gave me a good baseline management and I could take the immediate medication when it peaked. I used Buscopan to relax and settle the bowel muscles to avoid spasms whilst it was healing and was also put on a medication called Gabapentin, this was to manage nerve pain as I was finding my old stoma site was extremely swollen and tender... I had stitches and it healed with no complications. My abdomen was swollen and bruised, I was advised not to use my stomach muscles for a few months to avoid hernias in the old stoma site.
As I was leaving the ward I had to stop to run to the loo 3 times, this scared me as I had a long drive home, however I made it home with no stops and no issues, I think it was my body’s way of helping me make it home in one piece! I had a wonderful cushion to sit on that had a hole in the middle, this kept my tender bottom off the seat so bumps and dips in the road didn’t hurt! I also used this at home in the early stages to reduce pressure on the surgery site below! I was using warm water to wash after each bowel movement to avoid stinging from wipes or butt burn. I ensured the closed stoma site was kept clean and the local nurse helped me change the dressings for the first few days!
I remained at home for the first month, just managing to walk short distances at first, building it up slowly to a reasonable period. After a month I could drive but as I was still on a low dose of the Oxy I needed to be clear of that before I drove. It was at approx. 6 weeks I was free of the serious pain medication and was on the road to recovery, I struggled as it felt so slow and needed reminding often that I had undergone major surgery and needed to heal inside out.
At 12 weeks I had my follow up with Dr Warusavitarne, I was finding I had tenderness around the old stoma site, It hurt to cough and I feared a hernia, he arranged an ultrasound which eventually was clear and it healed.