Warning - includes pictures not for the faint hearted!
Firstly, I will share my diary of the prolapse, then follow with how to avoid prolapses happening and what to do immediately if they do.
3 weeks post op following surgery to remove my failed JPouch, remove and close all areas of my anus and creation of a permanent ileostomy stoma, something horrendous happened! My first stoma prolapse, and it went very wrong!
Surgery technical name: SILS (Single Incision laparoscopic Surgery) and ~TATME (Trans Anal Total Mesorectal Excision) excision of ileoanal pouch with formation or end ileostomy in left iliac fossa.
(Please always seek medical advice in the event of a prolapse – I am writing from experience, not giving professional advice).
Diary 23rd February 2020
It was Sunday and I was having a relaxed day at home; Stuart was sorting out the eves storage and I was watching. About 4pm I went into the eves to look at something and bumped my head, hard, on the beams, it caused me to jump/fall backwards and down.
I felt a few sharp pains in my stoma, unusual but not severe, so I assumed it was all normal and carried on.
At 7pm, whilst eating dinner, I noticed my bag felt odd, full and heavy. Odd enough to cause me to go to the bathroom and take off the bag to check it.
I removed my bag and OMG, I shouted to Stuart ‘help!’ I was standing there holding about 3-4 inches of my small bowel. It was protruding out of the end of my stoma and looked swollen and purple.
Picture 1 prolapse Picture 2 normal stoma
I had no clue what to do so called the hospital ward I was on post op. I had to ask Stuart to hold the bag under my bowel so I could call, he was amazing and held my bowel and stayed calm.
The ward nurse told me not to panic but to go to A&E as I was just 3 weeks post op and still had stitches round the base of my stoma. I had to put on another bag over the prolapse, it was weird wiggling it into it. I started to collect medications and get ready to go just as my boys arrived home from their dads’ weekend. I had to turn them around, back to his with the dog, all whilst trying to be calm and not scare them.
After a 30-minute drive we arrived at A&E and after a short wait, I was taken to a side bay so I could lie down. My stoma now felt very hot and was swelling yet still functioning throughout.
The emergency nurse came and registered me, she was in a rush so didn’t take my full medication list and said not to worry, that we could do it later… this caused me huge issues later that night!
It was 4 hours before the surgical team came to see me. By now my stoma had swollen further and was very painful and sore. I was lying flat to see if it would go back in by itself, but no luck. I asked for pain relief but as I was already on Oxynorm post op, all they could give me was a paracetamol drip; they also gave me liquids. (I can not have ibuprofen due to IBD and I am allergic to Morphine).
Stuart researched the internet and read the NHS guidelines for a prolapse stoma, it recommended I lie flat and poor sugar on it. The surgeon had not heard of this for stomas, but his assistant had, so she poured 2-4 sachets of sugar on and monitored it.
They also placed ice round the stoma (which was now out of the bag and just lying there, on my tummy, hurting a lot!) and waited to see if it helped reduce the swelling.
The surgeon tried to push the stoma back in with his finger, it was horrific and I was in agony. I ask for Entonox (gas and air) to relax me and stop the pain. I remember coming in and out of alertness, confused then relieved I was still in A&E and Stuart was there holding my hand.
They tried repeatedly, over the next hour or two, to physically push the prolapse back in through the end of my very sore stoma. Eventually they decided it was not going to work and I needed to go to theatre and have it repaired under anaesthetic.
The anaesthetic would relax my whole body and allow the stoma to go back in with some gentle persuasion.
I was petrified, they had me sign a disclaimer that stated if it didn’t work, they would need to relocate my stoma. I remember the anaesthetic room before theatre where I was given fentanyl and put to sleep.
I woke up in recovery at 3 am and was so relieved to feel it was back in where it belonged and not relocated. I was exhausted and stayed in recovery for the day.
Here came the medication issue! Because my normal medications were not listed, they had not been prescribed and I was refused them despite having supplies with me, these were now taken away from me.
This was humiliating as well as potentially dangerous. I was refused my inhaler, pain relief, antihistamines, histamine blockers, pregabalin and mental health medication. The doctor suggested I was taking too many drugs and had a problem! After many complaints, tears and pleading, the ward doctor came to see me (it was now mid-day) and said I was allowed them.
Late afternoon I was finally allowed home, I had extensive swelling and bruising from the prodding and poking and was told to bed rest, no lifting, bending or overdoing it!
Since this incident both Stuart and I have been left traumatised by the horrific images and events of the night. I check my stoma all the time, paranoid it will happen again.
I have researched what to do in the event of a prolapse and in hindsight, if it was treated immediately, I could have avoided theatre.
If you have a prolapse, here is the link for the official NHS advice!
This insert is taken from the above link:
How to reduce a prolapsed stoma
The following techniques can be used to reduce a prolapsed stoma.
1. Lay flat so that your abdominal pressure is reduced. Lie with your head back, looking up at the ceiling. If you are trying to look at what you are doing you will be straining your abdominal muscles and hence increasing your abdominal pressure.
2. By feeling, rather than looking, place a finger on the prolapsed end of the stoma and lifting it up, apply gentle downward pressure. If the stoma is not swollen then the bowel will usually slide back down into the stoma opening.
3. If the stoma is swollen then the swelling can be reduced by using either a cold compress or sugar.
a. If using a cold compress then wrap some ice in a towel and place over the stoma for no more than 5 minutes at any one time. Keep the stoma bag on whilst doing this
b. If using sugar then apply liberal amounts of household sugar onto the stoma and leave it there for 20-30 minutes to reduce the amount of swelling. This can be quite a messy affair so it is best to put a new/ clean stoma bag on and place the sugar into your stoma bag. If you are using a closed bag you will need to put the sugar in first, before you put the bag on. If you are using a drainable bag the sugar can be added after the bag has been put on by tipping it in through the bottom end. Once the bag is on, move the sugar so that is sits around the stoma The sugar works by drawing out fluid from the swollen stoma so helping to reduce the size. Be aware that as the sugar draws fluid out of the stoma you will end up with a syrupy fluid in the bag.
Patient Information Leaflet for: Managing a Prolapsed Stoma Author/s: Nicola J Picton Author/s title: Clinic Nurse Specialist Approved by: PIF Date approved: 19/05/2016 Reviewed: 11/05/2018 Date of Next Review: 11/05/2021 Available via Trust Docs Version: 3 Trust Docs ID: 10339
I think the main thing is don’t delay treating it, stay calm and seek help if it swells up.
I hope by reading this, I can help others deal with a prolapse if it occurs and comfort that it can be saved even if you need surgery!
I will forever be haunted by the incident and am thankful that I have such great support from my amazing partner.
Thank you for reading and take care! Don’t over do it!