What Advice do Patients look for Prior to Ostomy Surgery?

Whenever I hear of new ostomates, I always wonder

What sort of questions do they ask?

How much do they get told?

How curious they are?

and  

What is their medical background?

Basically, I wonder how prepared they are. And if that preparation has come from themselves or from healthcare professionals.

Because requiring a stoma comes from so many different medical conditions, I’m trying to go with the assumption that the background information known prior to needing surgery is minimal; that this new circumstance is one of unfamiliar territory.

So I posed the below question on Twitter to get some experiences of what ostomates wanted in pre-surgery advice: (click through to see the responses and replies)

#ostomates!
What advice would you have liked to received before you had your #stoma ?
Please RT and reply if you have something else to add; there is no wrong answer!

— Louise Hunt (@louisehelenhunt) April 20, 2018

What I asked was if ostomates would have benefited from more information on how and when to return to ‘normal’ after surgery, how to go about sex with a stoma and how having a stoma would impact an existing or new relationship. How your mental health is affected and what support is out there, or if there was more information needed on what supplies were needed and when, as well as how to best use them.

I stated plainly that there was no wrong answer, and those four options were just a spring-board for more conversation on what was missing or what was great about the advice and information they had received. For many they wanted help with mental health and access, but some praised how well and how comfortable they felt going into surgery with their given SCN – stoma care nurse – and hospital.

Whilst a poll on Twitter is only targeting a small fraction of ostomates, and given how well a positive profile of live with a stoma has been for several years now, it was no surprise that this poll didn’t have many negatives.

My experience

I’d been scared of needing to have a stoma when I first got diagnosed with Crohn’s disease in 2011. I thought it was the most terrible outcome for myself when I was 23 and new to everything with IBD. I’d never been sick before, never had to spend time in hospital, never had any scans before, never had strong painkillers before; I was green and naive. I was determined to not let my disease get to a point where I had no option but to have a stoma formed. As the years went on, however, my disease progressed and started to destroy my quality of life (QoL). And whilst I put up with alot for a long while, my medications were not keeping my disease at bay and I needed surgery – a right hemicolectomy – to remove a stricture and give me some better QoL. Sadly, that surgery failed to keep my disease static and it meant loosing my colon three months later.

But by the time I needed my stoma, I had already met people with stomas, heard about the improved QoL they had with their stoma and I was assured that this would happen to me. I asked my SCN lots of questions prior to surgery, got to try a bag on and get use to the feel of it, and I slowly became excited. Why? Because I wanted my life back! I was sick of being sick and fed up never getting anywhere with my disease controlling my every move. 

I reached out to other ostomates online from hospital bed, hooked up to my TPN in my PICC line the days before my surgery took place. I asked all the silly and ridiculous questions I could. I found myself some peace with my situation and vowed that my IBD was not going to control me, I was going to be proud of myself, shit bag and all.

What I personally wished I’d known

Part of me was skeptical when ostomates told me how good life was with a stoma. It can’t be that good, they must be exaggerating and playing a trick on me. I told myself to take their words with a pinch of salt; surely something would be bound to happen to me! But honesty, despite some set backs and some hard times, I can honesty say they were not lying and they were not exaggerating. I live my best life with my stoma. I am no longer in constant pain, my bowels do not spasm at the slightest bit of good and wholesome food, they do not leave me feeling tired and exhausted from all night bathroom trips. I don’t experience half the problems I used to.

To some extent, my problems now are new problems. They do not compare to my old problems. Remembering the pain and the suffering I used to go through; it keeps me going these days.

I wish I’d known more about my remaining bowel and how it functions. I wish I’d know about blockages and how to solve them myself. I wish I’d taken dehydration more seriously. I wish I’d not waited to have my stoma created. I wish I’d had my rectal stump removed, because now its a literal pain in my arse and another surgery worries me: – such a silly thing to be worried about now, after two major operations!

I have written about ostomy challenges in my blog before – you can read all of my ‘ostomy’ posts here  or just the ‘challenges’ here – and I plan on doing more to help give more guidance to new ostomates, as well as some reminders for older ostomates who might experience new things in the foreseeable future. There is definitely more to be said for blockages and about dehydration too. As well as more on stoma bag systems, the terminology used – this is something I still struggle with some days – and I work in a stoma care role! –  it varies so much between who you speak to, the company’s own branding terms and how HCPs describe products too!

Final Words:

My advice to any new ostomate is this:

1. Stop trying to make it perfect. Some days it get super-duper messy. Be prepared to laugh about it because what else can you do when you’re covered in shit? It happens, literally.
2. Get comfortable. Find what ‘routine’ – be it change time, change stance, emptying process, the clothes you wear, the food and drink you eat, how you live with your own stoma – works best for you. Being comfortable is so so so important to getting the best from what’s happened to you. And that is a learning curve that never really goes away.
3. Don’t worry if you aren’t doing what everyone else is doing. What works for you might not work for others, and vice versa. You do you.
4. It’s not always going to be smooth. Nope, it won’t be. But, hey, you take the rough with the smooth and eventually the rough times end and the good times far outweigh them. You have time take time to adjust; not only you adjusting to your stoma, but your stoma getting used to you! 
5. Celebrate the small victories. These might be how many days you can do without a leak, when you achieve a perfect bag change, your quickest change and the longest period without needing to change your bag. Small victories matter in the beginning. You are new to this, be gentle to yourself, but also celebrate your achievements.
6. But don’t get too caught up in these. They are good to help boost your moral and confidence in the beginning but they ultimately won’t define you. Having a stoma does become normal. I can’t tell you when or how or why, but one day it just clicks.
7. Don’t be disappointed if things go wrong. Just try your best to chalk it up for experience and carry on pushing through it. The worst feeling is deflation after so many good days. But remember; you are just one person and sometimes things happen. There might not be a rhyme or reason, but you can get through them. I promise.
8. If you need help, ask. Simple but solid advice. So many ostomates out there are happy to share and guide new ostomates through bad periods. They might have been there before and have sage and worldly advice. Others just really care and want you to enjoy and be proud of your life as a ostomate. Don’t be afraid to ask anything, literally anything! 
9. You will never be able to stop your stoma doing what it does; it can not be controlled but love it for what it does; how it functions and the freedom it gives you. 
10. If you are really in a pickle; you need to bite the bullet and seek medical attention. Some thing in your gut will tell you that you’re in trouble. Listen and take heed.