Louise’s story

My post-op recovery following my panproctocolectomy (Barbie-butt surgery)

For those of you following my journey, you may recall seeing my previous blog posts about pre-operative assessments and preparing for surgery. As of the 19th October, I am now minus a rectum and have my new model end ileostomy. She kept her name, Bertha. So, how have I fared with the post-op recovery?

Well, I can say I am now over the worst of the recovery and am semi-fighting fit, even if my family and friends are still watching me with eagle eyes to make sure I don’t overdo it. I have to admit, I still get whacked with fatigue on a regular basis, but for the best part I am off all of the pain medications and managing life as I normally would with my usual carefree attitude and ‘what’s the worst that can happen?’ mentality.

The morning of my surgery

It’s hard to believe that this was me three months ago and I am still trying to wrap my head around the fact that I nearly met the pearly gates down in theatre again and was on intensive care for several days due to dangerously high lactate levels, sepsis watch and renal failure. Did I mention my body hates being tinkered with?

I knew that signing the consent forms for the surgery, that there are always the mentioned above potential risks, but at the same time my team are absolutely brilliant and I wouldn’t have had any others carry out this surgery due to my habits.

Signing the forms that morning was scary, and I will admit I was nervous at the thought of getting rid of the innards that have caused me a fair amount of pain and aggravation over the years, but that was the price I was willing to pay to get my life back.

What did I have done?

(Please note I am not a medical professional and this if off my discharge papers and summary):

1. Adhesionlysis (A fair amount of scar tissue removed)
2. Loop ileostomy taken down
3. End ostomy formed
4. Closure of a rectal sheath (pain medications injected into the surgery site and tissues)
5. Dissection of the anus and rectum
6. Large bowel removed and sent to histology so currently envisioning this sitting in a large jar

My Recovery

My surgery took a grand total of seven and a half hours. Then, I went missing for two hours after and was winged to intensive care. They were having issues with getting my pain levels under control and trying to work out what was going on with my lactate levels.

Once I was in intensive care, I saw my Mum who was a nervous wreck and she produced a lady teddy, new bootie slippers and a Lady and the Tramp tracksuit. I set my Mum and Ben a Mission Impossible-style task to keep them occupied. Ben then questioned the doctors as to the if’s, what’s and buts and they tucked me in and left.

Not to mention I was crying and causing a scene when they weighed me and accused them of turning me into a fat hamster, as my weight – thanks to fluids and surgery, had crept up by about 10kg.

I honestly couldn’t tell you what I was up to on intensive care. I really don’t remember anything until the late Monday afternoon as I requested on the Monday morning to be taken off all the IV pain medications, as I was scratching myself red raw on the Iv Oxycodone and I wasn’t in the best of moods. Mum said I was tetchy and Ben, as diplomatic as ever, said I was doing well.

Day 3- Day 9

Day 3:

Praise be, Bertha started working. It was a bit touch-and-go as she wasn’t behaving, but once she started there was no stopping her and I had my first leak that evening. A lovely night nurse helped me change the bag and get cleaned up, and we wondered if we could use a suction machine to try and get the bag back on as it was rather volcanic to say the least.

Day 4:

The words post-op ileus and me going, ‘oh not again.’ I have written a blog post to explain my eight days with ileus. Post-op ileus is just a part of a reoccurring nightmare for me, along with the start of the projectile vomiting as I was trying fluids to get the bowels restarted.

Day 5:

I was back to IV drips to keep me hydrated, dealing with being sick and finally had my central line and bottom drain removed. I have to admit, the drain removal process always takes my breath away, but I managed to make the nurse laugh so much that she was crying, so that was considered a successful day.

Day 6:

I am losing track of the days now and I am rather crabby, but behaving, and saying to my morning doctors that I am doing great, hadn’t been sick in 24 hours, and then it happened. I was sick in front of them and there was a fair amount of discussion of NG tubes. Anyone who knows me, knows my worst fear is that blasted tube and I’m having one-on-one conversations with my body, telling it to buck up its ideas, as I will never forgive her if I have to have one of those tubes. I also got an outing outside the hospital in a wheelchair pushed and pulled by Ben and some lovely snuggles with my daughter.

Day 7:

I had my tummy drain removed, followed by some large amounts of clotted blood that followed the tube out. There was another projectile vomit incident and IV fluid bags being attached again as my fluid output was down to six litres, but needed to be less.

Day 8:

Oh my god there is actual brown output in my stoma bag, the ileus has past, and my body is working again! Trying to stuff my face after that didn’t end well. Thank god for IV buscopan.

Day 9:

Morning doctor rounds –  as long as I am well behaved, and my body does what it meant to do, I am allowed home tomorrow. I happy dance to the best of my walking wounded abilities and make the phone calls. Day goes on as normal, me sleeping most of it away.

Day 10:

I am being discharged. I get to go home and sleep in my own bed.

Recovery

This, for me, is a typical recovery period whilst in hospital. I then spent a further three weeks at home, migrating from bed to sofa, managing to shower on my own and then getting dressed etc.

This surgery has pretty much bowled me over and I have to say the recovery has been hard for me. I am a very active person, both in spirit and mind. I will shamefully admit to throwing a few tantrums as I wasn’t liking not being able to help with anything at home. I sucked it up and now I am getting back into the stride of regaining back my life with no more diversion colitis, no more fissures and no more pain caused by things bypassing my loop ileostomy.

As always, I shall keep you updated on my trials and errors whilst I get back to feeling like myself.

Many thanks for reading,

Louise X 

*Disclaimer *

The information in this blog is intended to give advice to ostomates. The information given in this blog is based on Louise’s personal experience and should not be taken as clinical advice. Each ostomates needs are unique to them and their stoma care routine. Please consult with your Stoma Care Nurse before undertaking any changes to your stoma care routine.