The 5th may would have been squirts 7 year stomaversary. Unfortunately he left us a week before.
The past 5 weeks i have been on a rollercoaster from hell. I’m writing this from my hospital bed, i have been in hospital for 5 weeks. I am nowhere near the end of this journey but thought would be a good time to write what has led me to here.
There is no need for me to go into what led me into this situation, online is not the place to start analysing all the mistakes, and I’ve been reminded to not beat myself up, but the long and short of it is i thought i was superwoman, I thought I could do the same, even more than a normal person, and didnt learn from my hernia op in november last year. I’m not saying you can’t live a normal life with a stoma but just dont think your invincible like i did!
Saturday 21st april I began getting pains. I thought was just a blockage which ive had many time before and have manged to clear myself. The day continued and wouldn’t budge. I was due to be working that evening. Although I was still in pain i still went in, not wanting to let anyone down, I had went to work with blockages before and Waited till they passed. Like msny other times before I thought it would pass on its own. I finished at 11.30pm by this point I was in agony and couldn’t get a taxi home. Eventually got home about 1am. Early hours of sunday I woke up still in agony and began bringing up bile and poop. I realised I’d had no output for aproximately 15 hours. I rang ambulance and got rushed to hospital. I was alone and scared
I was taken to the emergency Care hospital. A Ct scan showed my bowel had twisted behind my stoma where my hernia had been, strangulating my bowel. I had emergency surgery to untwist my bowel and removed the damaged section and have my stoma reformed. 2 days later was transferred to one of the smaller hospitals to recover.
At this point i was still unable to eat and still being sick, though a small amount of liquid stool was coming from my stoma. They assumed i just had ileus from surgery and it would rectify itself after a few days. I was given ng tube to empy bile from my stomach due to being sick alot. I knew something still wasnt right and begged for tests. A week later my requests were granted. Tests showed the bowel was still twisted and i was transferred back to emergency care where my surgeon took over the case. As i hadnt eaten in nearly 2 weeks being nil by mouth he requested i get a central line in my neck for intravenous tpn feed. This required a surgical procedure to make an incision in my neck.
The following day i underwent another ct scan then was operated on by my surgeon who moved my stoma to the left side of my body and stitched up the site from where my old stoma was. Squirt was no more, my new stoma was named squirtle. 2,days later transferred back to the smaller hospital, where the care is much better! The emergency hospital just want to patch you up, ship you off, there is very little care, and were not good with managimg pain..
The wound from where squirt was got infected and opened up a little so had to have an open wound to manage. The ng tube was removed and they began introducing food back into my diet.
I thought i was on the road to recovery. Eating started well but then my bowel shut down and my stoma stopped working. i began bringing up bile again so was returned to nill by mouth and ng tube put back. As they hadn’t weaned me of my tpn i was only being fed by tpn.
A week later after me again begging the doctors decided to do more tests. they agreed the bowel should have began to work by this point. Since being admitted i had been in constant pain needing high levels of pain killers. A gastrografin test was done which showed no blockage but showed areas where it struggled to pass showing there was still some problems, a ct scan was also ordered it showed my bowel had twisted again so got transferred back to emergency care for more surgery. Surgery was done the following morning. And due to severity was open surgery. The 2 previous surgeries were lsproscopic with a few inscisions about 10cm long. I woke up in recovery and was taken to intensive care where I stayed for 4 days before being moved onto the ward. I had a midline inscision from my breasts to my bikini line. I had a straw sticking out at the top and bottom, a type of drain called penbroke drain. Where my belly button used to be was a hole where you could see the straw, the old stomach site had been opened up. The belly button and old stomach site were packed with dressing, being told they’d heal from the inside.
I found out that my bowel had twisted and done a loop then got stuck within the mesh from the first hernia repair causing adhesions. The part of bowel which had twisted had an abscess and the mesh had became infected. I was told all the mesh had been removed. I was in alot of pain which wasn’t managed very well. I had a pca with morphine. I spent one day on the ward at before begging to return to the smaller hospital where i knew i would be looked after. My ng tube was removed and i began eating food. I found this really difficult. After not eating for so long and also the fact that the previous week i was fine till i began eating, then bowel twisted, so in my mind i worried if i ate again my bowel would twist again,also everytime I’d tried food in the previous weeks i was sick. Aldo my stomach would crsmp when i ate, the only thing that i could eat with no issues was icepops and ice lollies, my bowels had been manhandled quite a lot so i gathered they were just bruised and needed time.
Not knowing why it twisted didn’t help, plus i had been right everytime up till this point, and drs always wrong so found it difficult to trust. As i began to eat and squirtle began to work i had another panic when my bag began filling with blood and blood clots, it only lasted 20 minutes, the nurses weren’t to concerned as was dark blood and not fresh. Although upto now it hasn’t happened again it still worried me.
Determined to get home, I perservered. My dr said i had to eat my way out. 7 days after surgery the tpn was taken down, leaving me on my own to eat enough to get me through. I was prescribed fortisip drinks to help. Also after 7 days the pca was taken down and i was put onto oxycodone with oxynorm as back up for times between doses when needed. This made the pain bearable. The two open wounds continued to cause problems, as i write i am awaiting on tissue viablitity team to come and look at my wounds.
Squirtle is behaving and I’m slowly recovering, managing a little more each day, and slowly managing to walk around. The catheter is being removed which will mean needing to get up alot more! I am hoping to get home sometime next week. I know i still have a long way to go but I’m an ibd warrior and i won’t give up!