How you end up with your ostomy can make a huge difference to how you accept your stoma and adjust to life with it. I have asked three different people who had their ostomies via emergency, planned or bit of both. Now bit of both sounds confusing but really it is someone who had surgery booked but something happened which forced the surgery to be brought forward and it then became an emergency. Knowing that there are so many people out there that have accepted their stoma’s regardless of how they received it and live full lives may give you some peace of mind.
Firstly we have Louise from the blog Young Crohns telling us about her planned ostomy surgery:
“My ostomy surgery took place in August 2016 after a two week admission on which I was so sick that I needed TPN feeding for the duration. A pretty horrific colonoscopy determined that an ostomy would be needed instead of trialling new drugs to help my disease and I gratefully accepted this decision. That is not to say that there were moments that I was confused, lost, unsure and scared. What if I couldn’t cope? How would my stoma feel? Would I still be sick? How would I live again? How would this affect my body image and how my relationships would go? Things that are natural to think. What helped was speaking to other ostomates out there and having some very frank and honest conversations with my SCN, IBD nurse and my family. In the end, what helped the most was other people’s experiences of how good life was after stoma surgery and the Pre-Operative pack form Coloplast – where I got to try on a bag and use a fake stoma. After that, I knew I could face it all – with my own strength and determination. Being a planned operation gave me time to come to terms with what was going to happen, and that was incredibly valuable.“
Secondly we have Matthew and his two emergency surgeries:
“I had an abscess that wouldn’t heal and because it would not heal it made me very poorly. My first surgeon told me he needed to do a EUA an examination under anaesthetic. I woke up after the surgery with a stoma fashioned. I didn’t get asked if I wanted one or told that it would help with my recovery. I was numb first of all I didn’t know what one really was or what I would have to do to take care of it. I did have a very nice stoma nurse who came round and talked about it and explained what I would have to do. I didn’t want it I was 22 and already had enough issues in life. I felt unattractive and dirty; I didn’t know how it would affect my life both socially and work. The only thing that kept me going with it was that I knew that it would be reversed when I was better. I knew it wouldn’t be that long before life would get back to normal. I went back to see my surgeon and he told me I would have to go to London’s ST Mark hospital and see a professor who could look after my case better. I saw the professor and he said he would need to operate and sort a few things out inside and I thought he would reverse my stoma at the same time. He said it needed to be done as an emergency because I was showing signs of sepsis. I went in a few days after seeing him, I was 23 and thought I would be getting my life back on track.
I was put under and the surgery begun. It was only meant to take about 5 hours. I woke up 13 hours later. I wasn’t with it and didn’t know what was going on. After a couple of hours still being away with the fairies I came round. I quickly realised that I still had a stoma but it had moved sides. I didn’t know what to think apart from why was it still there. The next day the professor came round and explained that everything inside was a mess, he explained that he had removed my large bowl and a small section of my small bowel; he had also removed my rectum and sewn everything up. I was going to have this stoma for the rest of my life. I didn’t get asked or consulted, it was done and I had to deal with it.
I have been asked how did I accept or have I accepted it. The answer is a mixture of yes and no. I accept that the professor had to do what was needed and without it I wouldn’t be here, but overall no I don’t think I accept it. I have days where I wish I didn’t have it, I breakdown on days when it leaks or misbehaves. I worry about the future, like what happens when I get to the point I can’t change it. I am on anti depressants because of how I feel. I tolerate it because it’s keeping me alive and because I’m still here I met my wonderful supportive wife and we have a fantastic son. I am in a better place than before thanks to the tablets and because of my wife, finding someone that accepts it is not easy but when you do they are a pillar of strength you can lean on. I have also found support from support groups where I’ve met people like Stephie and Lauren from the Purple Wings Charity who sent me on a fun day to Lego Land where for one day apart from the pain I felt normal again. If you would ask me if I have been given the option to have one or not would I have chosen yes probably because at 23 I didn’t want to die, but if it had been explained that this could have quite likely happened I could have tried to prepare myself mentally. This is my story and how I feel I don’t want anyone who reads this to put them off having the surgery if that is what they have decided.“
Lastly we have Amanda talking about her bit of both surgery:
I’d always been quite accepting of the fact that I would need a permanent stoma. Having had an ileo-rectal anastamosis for 3 years and living with severe rectal inflammation, I knew the proctectomy was coming. I had really suffered, I remember running the London marathon and literally sprinting from toilet to toilet. I actually got a good time, it’s amazing what needing the toilet can do for your running speed!
My operation was scheduled for mid July and unfortunately it became an emergency early July. I had spiked a temperature and was feeling really unwell. After showing signs of infection, I was taken down into theatre and I woke up several hours later with a brand new shiny stoma. I’d done a lot of thinking prior to surgery and promptly named my stoma Ludwig after Beethoven. Mentally I had accepted the stoma, so having him appear early did not really phase me. What did phase me was ending up in ICU with pneumonia and a collapsed lung post surgery. This took a lot of time to recover from and would not probably have happened had my surgery not been an emergency. I love life with my stoma. Even though my disease has progressed, I would not change having Ludwig, he’s a constant companion, always wanting to have his say in matters and just as musical as his counterpart.
The below chart is taken from a poll I did in “The IBD and Ostomy Support Blogs Group” it was a bit of a shock to see how close all the percentages were as if I am honest I thought emergency would have sailed in front.