Preparing for Ostomy Surgery

This week I wanted to share with you what I found helpful in preparing myself for ostomy surgery. Some of these may not be for everyone but I took to Twitter to ask other ostomates what they did too. Preparing for any surgery can be a scary time; whether it is your choice or is an emergency – some emergency surgery isn’t a case of deciding and then whoosh you’re in theatre it could still be a day or two wait. I found that I felt like I shouldn’t be scared about my surgery because it was something I fought to have but deep inside I was fighting myself as I was still terrified but the other side of me was like you don’t have the right to be scared. Well yes you do and everyone I spoke to before hand agreed, but being somewhat prepared for the surgery helped.

1. Do your research – not all articles on the internet are completely factual but if you stick to well reputable sites you can find out about the type of surgery you are going to have as there is a lot of different types when it comes to ostomy or bowel surgery.
2. Ask your surgeon questions – you should have a good relationship and hold trust with your surgeon as in some cases your life is literally in their hands. So asking them questions and getting as close to a straight answer as they can give is really useful. Let’s face it they don’t have a crystal ball so can’t tell you if you will be pain free forever (scar tissue can bugger that up) or if you can have kids or not as every surgery on your abdomen could affect fertility but remember there are plenty of men and women who are able to conceive after surgery.
3. See if you can have a sort of counselling session with your stoma nurse team – this is something my surgeon insisted on as when he did my jpouch after care at 21 he remembered how much I hated the idea of a stoma (I didn’t know anything about them to be fair) and he wanted to know that I had really thought this decision through as I demanded it be permanent! In these sessions with the stoma nurse you can discuss different bags and they can give you a pack of information and a little sponge stoma to stick to your belly and practice placing and taking the bag off. They are the ones who understand the trials and tribulations ostomates face rather than just how it is formed like the surgeons.
4. Order samples if you can’t get a training pack and wear it then try on your clothes – some things may make you feel like nope never wearing that whereas most of your clothes should be absolutely fine with an appliance underneath them. Let’s face it you may like shopping and find you want a new wardrobe and that to some is a bonus in itself (not to me however I hate shopping!)
5. I used shock tactics on myself – this really isn’t for everyone and can actually be worse if you don’t read descriptions or use clear search terms. So I Google searched healthy stomas and clicked on the image tab; I did this until I could look at a stoma without crying. It took me a full 3 weeks to be able to go okay this isn’t so bad.
6. Join Facebook groups – there are absolutely tons of these now and some are better than others, also some are going to be better suited to you. My advice is join a few of them see what they are like, read comments, ask questions and if you don’t like it leave them.
7. There are tons of blogs out there that cover all different stomas and different reasons behind them. I am obviously a blogger separate to this one but mine might not be right for you!
8. There is The IBD and Ostomy Support Show over on YouTube that I co-hosted for nearly two years and Rachel doesn’t even have her stomas from IBD yes stomas as in multiple she has both a urostomy and an ileostomy.
9. Talk to your friends and family about any worries and about how they could help you after surgery. Do you have kids that need to be dropped off and picked up from school? Could someone do that for you for the first few weeks? Could someone batch cook meals that you pop in the freezer and take out when needed? Or someone just to check in on you? My best friend visited me in hospital and ran down the corridor to see if she could see my bag through my clothes as I was a bit conscious about it FYI she couldn’t!
10. Think about where all your ostomy supplies will be kept because until you learn your routine and what product works for you, you may find you still have a lot of items. Trust me when I say this that nobody wants to feel cluttered with their supplies! Here is a post about how I store my supplies.
11. Look into going to a local ostomy support group. There are a lot of ostomates who either have set up a local group by themselves or alongside their stoma care nurses. This will help you feel less isolated and can talk to people.
12. There are ostomy events all over the country be it stoma open days or charity events such as the annual Purple Wings Charity ball or the Get Your Belly Out gala, both have Facebook pages and are great for meeting people of all ages and backgrounds.
13. Remember that everyone’s ostomy journey is different. You may get your quality of life straight back and come to terms with the day to day dealings of your ostomy or you may hate it and it causes problems of it’s own. Now either of these scenarios are fine because you can learn to love it in time or just accept it which is totally different from loving it. If you do get issues from your stoma most can be sorted or alleviate through a change in routine, some skin issues however may not be so quick to fix but as some amazing advocates out there show it doesn’t keep them from living their life they just adapt.