From day one, things not to do with a stoma following surgery.
I spent a lot of time in hospital following the creation of my stoma. I developed life threatening bleeds, post op infections, and a yearning for non-hospital food (it really was bad.)
I was shown by the Stoma nurse how to clean, change and care for my stoma, and so a few weeks after arriving at hospital, I was sent home.
Although my doctor signed me off work for 6 months, I really did think I was invincible, and this was my biggest mistake. I thought it would be good to share my errors and problems with you, so that you don’t make the same mistakes I made.
I would say that all of my errors were totally preventable. It was my stupidity that got in the way.
1. When the surgeon says to take it easy, do exactly that. The very next day after coming home from hospital, I was trying to push a vacuum around. I couldn’t manage it. I was so weak. This led to the creation of a hernia that I still have (and hate) to this day. A surgeon recently said this was the worst of its kind he had seen. It really is like half a football stuck to the side of my body. However, I’m old enough and ugly enough to now just accept it’s there. Maybe in the future I’ll have it removed, but it will entail a serious operation and possible reciting of the stoma to the left side of my body.
2. I had a Panprocolectomy with Ileostomy, which basically means that pretty much everything below was removed – the colon and rectum, and just for good measure, my backside was sewn up. This led to some nasty bleeding. I would sit, stand, sit, stand all day long – the result was inevitably some broken stitches. This led to some serious blood loss, and two transfusions. As the stiches were completed “inside” the body, there was (at the time) nothing that could be done other than rest, and to just sit down, relax and watch shopping channels all day.
3. Walking the dog. After the bleeding stopped (around a month later), I was bored to tears, so thought I could take our dog for a walk across the park. Big mistake! – for one thing, he was a very strong Staffordshire Bull Terrier, soft as a feather with a heart of gold, but a swine towards cats. He would see one and be off in a flash. He was never let off lead, but had an extendable lead, so, when he was off and running the lead would only go so far before he came to a stop with a jolt, and so did I. The result – bleeding aplenty, no burst stitches this time just a nasty tear.
4. Driving. I attempted to drive too early, and not just in the car, but also on my motorbike. The car is a bad idea as the seatbelt sits right across the stoma, and unless you are fully healed you run the risk of damage, bleeds etc. A motorbike is a bigger no. They are heavy, especially when you “put your foot down” when stopped. This probably helped my hernia become the size it is now. I should have been patient.
5. Feeling sorry for myself. I remember coming home from hospital and sitting in the bath, looking down on the stoma. At the time all I thought was “oh well … I’m still here and kicking”. Four weeks or so later, I was getting all depressed for no real reason. I couldn’t get the image of my “deformity” out of my head, and I grew to hate the stoma. This mini depression lasted around a week. One morning I woke up and thought “so what!” – having the stoma probably saved my life, and I’ll always be grateful for it. After that, I was fine, but I went through a week of hell for no reason at all.
6. Don’t stick with the ostomy supplies the hospital gave you. I was sent home from hospital with a limited supply of equipment and I can still picture the translucent bags supplied. I put up with this for a few months until I realised, I actually had a choice in what I used. From that moment on, I was dabbling with samples until I found the pouches I was comfortable with. I should have done that long ago!
7. Disposal of used ostomy pouches. My stoma nurse told me that I should simply bag the used pouch and place in household waste for disposal. Silly me did exactly that and ended up with a dustbin that was almost another life form. A little Googling with the problem showed me that my local council offered free clinical waste collections weekly. I should have done this month’s before. I would have saved a fortune on bin fresheners, I’m aware not all councils offer this facility, so I’m lucky mine does.
8. Lastly, don’t do shopping channels online. Within point 2, I mentioned sitting on the sofa watching shopping channels. Don’t ….. not unless you want a houseful of items that you don’t need, let alone will ever use! I can still remember buying a pair of plug in dehumidifiers … these things were so small, they were saturated within an hour of using them, and cost a fortune … in short, don’t!
That's really helpful Andy. Your hindsight will be able to help others just going for surgery!
Thanks for sharing - this is valuable advice. I'd also add to be aware of your nutrition - an illeostomy will change the way you absorb food and drink. Talk to a dietician, and learn what works for you - and what doesn't. You can control your stoma output by balancing diet and medication. Supplements can be important - such as multivitamins. Your body will tell you! (My hair started to fall out after my Panprocolectomy - lack of vitamin D!)