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How to Prepare for Stoma Surgery

Me in pain attempting to enjoy my 18th, dependent on steroids several months before my surgery.

My operation was in 2011 so it feels a long time away now but I can still remember quite a bit about it. I was 19 at the time & even though it hadn’t been mentioned until a few months before it became a reality, I wanted it to happen so that I could hopefully start building a life. I say building a life because I honestly didn’t know what life was like outside of pain, hospital, not wanting to eat and being on endless steroids with endless agonising & unpredictable toilet trips. I was diagnosed at aged 7 after endless tests with Crohn’s Disease of the small intestine. Because of various reasons including my huge fear from bad experience of having camera tests (colonoscopy/endoscopy) and the fact that the doctors always tried to push me to have them done awake, it was diagnosed in the wrong area. Aged 17, I moved up to the adult clinic & had another set of scopes done whilst I was asleep this time (yay!) and I was rediagnosed with Crohn’s Disease of the large intestine (colon) and rectum. I also had flares of Crohn’s in my esophagus. I was told that because the wrong area had been treated mainly that my disease had got very severe and the only option left for me was a permanent ileostomy. This was big news for me and even though I didn’t see the extent of it coming, I was not surprised surgery was on the cards. My main aim was preparing myself as best as I could (medical limitations aside!) so that recovery would hopefully be easier for my body to deal with, mentally and physically.

Can you always prepare for stoma surgery?

There are people who sadly do not have the time to prepare for stoma surgery. For example, if their stoma is made because of an accident then this changes their lives in an instant & I cannot speak from my own experience about this, but I can only imagine how difficult it must be to come to terms with! I have known people who this has happened to though & they are living amazing lives in the face of adversity and showing everyone just what can be made of life with a stoma, planned or unplanned.

Does having stoma surgery mean it will be there forever?

Thank you to my bag saving my life & it being forever, I am actually here to enjoy things such as special occasions like this!

No, not for everyone. Mine is permanent so will be with me for life and I have had my appendix, colon, rectum, and anus taken away and my bum stitched up (a barbie butt!) as I will not need to use it ever again. This was because the extent of my Crohn’s into my rectum etc was too advanced and I had bad narrowings (strictures). My operation also saved my life and because it was so major and needed so much removing and doing, this also made it permanent. They discovered a large mass on my colon during surgery which I was told would have probably killed me in a very short time if I hadn’t had that surgery then, so that was something scary yet amazing to hear that I had been so close to not making it. I know people who have temporary stomas and some who have had reversals and live life with the “normal plumbing” again, but every experience is different depending on the individual.

“I’ve been told I’m having stoma surgery…where do I start?!”

That’s a big question! It’s completely understandable for you to feel completely overwhelmed and almost a little lost in whatever circumstances you have received the news in that you need a stoma. I can’t speak for everyone, so I will explain what worked for me. I wanted to have mine as I have previously said. My hospital team got in touch with the stoma nurse and she was in clinic when I got the news, so I soon learned that she would be my stoma nurse who would become a huge part of my ostomy story both pre and post-surgery. I sat with her and my Dad and we spoke at length about how I felt, and I asked any burning questions I had there & then. She gave me a pack to take away with ostomy information in and reassured me that it was a lot to take in so to go over the information in my own time and to ask if I had any questions. We then arranged a number of appointments over the next few weeks for us to meet at the hospital and speak about my upcoming surgery. I was given a fake stoma and some bags to get the feel of and even wear on my stomach, and she showed me how to put water in with a little syringe so I could practice emptying my bag and how it would feel under my clothes. She also helped to plan where my ostomy would be positioned if the surgery went to plan, and this involved marking me up with a black ink “x” in a circle on my stomach the day of my operation for my stoma to be brought out of and fixed onto the skin of my stomach.

“Is it just medical professionals I can go to for help?”

Attending the #GetYourBellyOut birthday ball this year.

Absolutely not! The stoma nurse I had when I had my surgery was absolutely amazing & the stoma nurse I go to today is too, but my main support comes from online support groups. I met some of my best friends online in the #GetYourBellyOut group and have a great friendship circle in the IBD community, some of whom I have met & meet up with. Online support for me was vital in the run-up to my surgery even though there was a lot less of it in 2011 than there is now. I loved the fact that even if I was crying in my bed and was backward and forwards to the toilet, I could type in the comfort of my own bathroom knowing that someone would always be willing to help! Don’t hesitate to reach out either in person or online! I still find online great for support these days & running my blog & writing blog posts such as this help me to help others which is what I always wanted to do since even before my surgery. Even if this post helps one person, then that’s amazing!

How will my life change after stoma surgery?

The ways in which your life will change after surgery and to what extent will be very much a personal thing, but generally I like to remind people that stoma surgery is done with the aim of hugely helping you, not hindering you. If doctors don’t feel that doing stoma surgery is beneficial and that the benefits hugely outweigh the risks, then they wouldn’t be doing their jobs properly!

Of course, life is different after stoma surgery. You have to get used to a whole different “plumbing” set up & from my own experience, recovery can be slow, uncomfortable & very testing some days. Recovery is also freeing & you know that the pain you’re feeling post-surgery should hopefully have a means to an end, unlike with Crohn’s pains for example where it gets so debilitating to the point you feel it will never end. Post-surgery pain at least gives you a bit of hope, even if it is very sore at the time.

Recovery was very much a case of two steps forward and one back for me, and I ended up in tears some days from being overwhelmed yet would be beaming other days from something so simple as being able to drink a cup of tea without pain. The few weeks after my surgery was the worst, but I would do it all again to feel how I feel now.

How long does it take to recover from stoma surgery?

Enjoying my holidays in Portugal in 2018. Sun out, bag out!

Again, this is different for everyone. For me, I’d say it was a few months before I felt able to do more “normal” things, such as actually having energy and being able to walk around for longer periods, eat a proper meal & start to feel more “human”. I left the hospital around 6 days post-op, but feel I got off very lightly here and was very stubborn to get home because I fear hospitals! I took my recovery very slowly as I had no job to get back to and no commitments and it was around a year post-surgery that I started looking into doing some voluntary work at a local pre-school (which I loved!)

5 tips to remember for your ostomy journey

  1. No question is a stupid question! If you’ve thought it, I guarantee you aren’t the only one. Ask your stoma nurse or someone you may know who has a bag, for example.
  2. Remember to listen to your body! If something feels wrong, get it checked. It’s better to be safe than sorry. If something feels like it may be a push too far, don’t do it…try again another day when you feel more able.
  3. Get involved as soon as you can post-surgery with your bag changes. This may seem daunting at first, but it really helps get you started for adapting to doing this at home without the help of a nurse all the time (I had a community stoma nurse visit me a few times once I was home at first.)
  4. Get walking when you can, even if it’s to the end of the ward with support and back! Gravity helps to get your digestive system awake and moving again after abdominal surgery. It can really help to get your stoma working.
  5. It’s okay to cry (and completely normal!) Don’t be hard on yourself when this happens! Seek support where you can and remember what trauma your body is trying to recover from. Be gentle with yourself and remember that it will get better. It may seem like a long recovery when you’re in it, but once you’re out the other side you will hopefully look back as I did and be amazed at how far you have come in such a short time in the grand scheme of things!

From leaving the hospital around a week post-op August 2011 to April 2019 ♥

-Amy

You can read Amy’s blog here, or follow her on Instagram here

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