Stoma surgery is major surgery and understandably, comes with pain which varies in severity for everyone, just as recovery varies for everyone. No two stories of recovery are the same, just as no two stories of needing an ostomy are the same.
If you are already a member of the ostomy community on social media, such as Instagram, it can be easy to fall into the trap of seeing someone’s recovery then using that to compare yours. Whilst easily done, this is unrealistic and it’s important to remember that you can take snippets from other people’s experiences, but that yours will be different in different areas. It’s also vital to remember this if you see complications from surgery. It doesn’t necessarily mean that complications will be a part of your surgery or recovery, fingers crossed.
This post isn’t to scaremonger anyone, but more to share my experience from what I can remember from my Panproctocolectomy surgery in 2011 (the operation that formed my ileostomy and also made it permanent by removal of the rectum and anus).
Pain before stoma surgery
Having been in a severe Crohn’s Disease flare up before surgery which was difficult to get under control, I was in a huge deal of pain before my surgery itself. I actually got rushed to hospital by my Dad the week before my surgery and needed morphine for the first time to even attempt to get my pain in my abdomen and intestines under control.
Pain immediately after stoma surgery
When I woke up after stoma surgery, it was all a bit of a blur. I just remember having pain and then passing back out to sleep after surgeons had asked me if I could feel my legs. Sadly, my epidural hadn’t worked so I was just relying on the anaesthetic going into my stomach until they changed tack with the pain relief and I woke up some time later back on the ward with a patient controlled morphine pump.
Everything for the first few days was a bit of a haze but there were definitely times I struggled with the pain and it did take a good while to get my pain under control. I think this is something that is quite common due to how different people respond to stoma surgery and also how people tolerate pain and different drugs. I don’t remember feeling specific pain barring just feeling like I’d been trampled over by an elephant. I also felt super emotional which is normal. It was more as recovery started to progress that I definitely felt where I’d been operated on more than anywhere else.
Pain during the initial recovery from stoma surgery
I remember my bum (‘barbie bum’) being specifically sore when I was laid down and tried to get myself up and down to walk to try and get my bowels moving after surgery. I was so grateful for the cushion
that my stoma nurses lent me to use after stoma surgery and I had this for about 3 months before I had to give it back.
Over time, I could start applying pressure to my bum wound by sitting on it etc which felt so good not having to rely on sitting or laying sideways all the time. That cushion was an absolute saviour in my recovery. It allowed me to sit in my hospital chair more comfortably and was also easy to wipe down to keep it clean.
Coughing and being sick was so tough with my near 6-inch wound down my stomach from open surgery and this is something I really struggled with. Nurses advised me to roll up a pillow or cushion and almost push this in towards my stomach and hunch round it when I coughed etc to almost absorb some of the impact. This did help a little but I still found it so sore.
Because I’d been so used to being hunched over in pain before surgery, especially when I walked, I also found it super hard to walk upright again without bending over and this did take a while to get used to. Step by step, literally, I got there.
As time went on, and I stopped being sick from my bowel going to sleep after major surgery, I got moved gradually off intravenous medication and onto oral medication, which helped to get me ready towards going home. The only thing I had via injection or intravenous still was the injections I had to have for around 8 weeks post surgery to stop blood clots, from being in bed and resting often.
Pain as recovery progressed
As recovery progressed, the pain definitely died down and went to more of an underlying soreness. I did take recovery super easy, mainly from being so unwell before surgery and it saved my life. I had a long way to go and almost had to build my life from scratch again because there wasn’t a time I could remember that hadn’t revolved around pain, toilets and my disease.
I did have good and bad days, naturally, and days where I found I needed more pain relief but as time went on, things got increasingly better. Barring a few hiccups, I am so happy with how my recovery went, even if it felt like it was taking a day in age. To start being able to live my life properly without feeling exhausted and/or too sore or tender, I’d say it took me a good several months then between 2-3 years post surgery I definitely started to enjoy life thoroughly again. Even though I had my surgery when I was 19, I always feel like I really started reaping the rewards of having an ostomy from around the age of 21 onwards.
The difference between surgery pain and illness pain
One of the ways I’ve found it more clear to describe recovery from surgery is explaining the difference between surgery and illness pain.
For me, illness pain was all consuming and left me feeling hopeless. I did often wonder if there was ever a chance of it getting better and in my dark times, felt like it’s all I’d experience all my life. Surgical pain, although it felt all consuming to start with, was different in the sense that, for me, it was attached with a comforting sense of hope. Things were going to get better. Even on the most painful days, reminding myself of those made such a difference.
Pain these days
I do get adhesion (scar tissue) pain these days from my surgery in bouts in my pelvis. Thankfully, these bouts are less often but when they flare up, they are painful for me. I use
natural pain patches on my pelvic skin for this and these do help, combined with oral pain relief.
Crohn’s wise, I sometimes suffer with joint pains but on the whole, I am able to have pain free days more often than not, which is such a blessing.
Pain after surgery is always going to be different for everyone, whether that be immediately after or years after. If you are struggling with pain, you don’t deserve to be in pain. Always seek medical advice, especially if pain is accompanied with a fever, temperature, bleeding, dizziness and/or vomiting.
Please note that this is not medical advice and that it’s just from my own experience and research only. As always, if you have any medical questions or concerns, it’s always best to speak to a medical professional.
Until next time,