Does having a stoma make life better or worse?

Amy and Ben looking out to sea

Having stoma surgery is definitely a big deal, whether for a temporary stoma or a permanent one. There is a lot of information out there that we all get bombarded with pre-surgery especially, leaving a lot of us feeling very overwhelmed and wondering where to start first when it comes to learning all about the stoma world! However, some people feel before surgery especially that they were not provided with enough support/information to prepare them for life with a stoma. Some people also have their surgery as an emergency, so may not have ever heard of a stoma before or actually had that time to prepare!

It’s safe to say that you can read up all you like about having a stoma, but the real experience & learning starts when you are post-surgery. Having the chance to read up on it beforehand definitely helped me, but for a lot of people, reading up on it can prove to be too emotionally demanding and hard to handle. This is completely okay & understandable. From my own experience, I would say if you get a chance to do some research beforehand, then definitely reach out to a nurse/doctor first. Stoma nurses can help prepare you for stoma life & also provide you with bags etc to get yourself acquainted with. Some hospitals also have fake stoma kits, where you can attach a false stoma to your abdomen to get used to where your stoma is likely to be placed and this can also help the surgeon to know where to place it so your jeans waistline isn’t resting on it, for example, if that is an option. Support pre-surgery is something I can address on another blog post, or definitely something you can e-mail me about at: hashtagstomabags@gmail.com.

Me post surgery (top left) and others from in hospital
Is the outcome of stoma surgery the same or similar for everyone?

A lot of people wonder whether having a stoma makes life better or worse. This is a very big question with a lot of potential answers depending on an individual case by case basis. No two cases of stoma surgery are the same. Reasons for having a stoma will vary from person to person & everyone’s bodily responses to stoma surgery will require different elements of aftercare and adaptations to their lives going forward. Nobody can predict really how each person will adapt to having a stoma, but it is important to remember that a stoma is designed to help and not hinder. In my case, I needed to have a stoma to not only make me better, but actually save my life.

 

 
“I’ve seen people saying that having a stoma fixed them! Will this be the same for me?”
I do know people who have had stoma surgery & have said it is the best thing that has happened to them because it has given them a quality of life and/or it saved them. Whilst it is important to remember that having a stoma brings so many positives, we also need to be realistic. I’m not here to scare the life out of you if you are awaiting surgery and say it is absolutely horrible, because it isn’t. Being realistic though, there are bad days with a stoma and things that will really test you, and there are also good days. A stoma is a huge change to our “plumbing”, as I like to call it, so it is only natural if some days we feel we don’t want it and we wish we were “normal” (whatever that is anyway!) Some people say you can experience grief of losing part of your body, and I have been through that phase myself.
This is a recent “stoma selfie!

The week after my surgery, I will hold my hands up and say it was the hardest week of my life. I begged to die in that week post surgery, because I had post-op sickness and I have always had a huge phobia of being sick. Throw that in there with being high on pain relief and hallucinating, bad pain, being in hospital and trying to get used to the change and listen to my body, it’s hardly a surprise! However, I would do it all again without a doubt to be where I am now because it has made me so much stronger. I made sure I was involved with my stoma bag changes as soon as I was able as I felt this would help me to adapt to being able to be at home without that medical help. It has been a long ride to get to 8 years post surgery, but my stoma saved my life & the problems I face now are a walk in the park compared to my life before my stoma. I am actually here to face those problems, which is how I try to look at it on days where I start to feel a little down with it.

What are the benefits of having a stoma?
On a personal level, there are so many benefits from having my stoma. I am going to briefly list some below:
  • I can go on days out and not have to plan my day around toilets
  • I can enjoy food without worrying about pain or nausea
  • I can attend gigs
  • I can actually live a life outside of my bed because I aren’t in agony
  • I can go on holiday
  • I can work full time
  • I can wear what I love (with added confidence thanks to Comfizz waistbands!)
  • I can experience most days without pain
  • I am actually alive to make the most of life with a stoma
  • I can exercise without pain
  • Opportunities to try new things such as blogging & working with medical/ostomy companies and projects
  • Making new friends (some of whom are now my best friends)

What are the negatives about having a stoma?

There are bad points to having a stoma.

Everyone will have things they would rather be without because of having a stoma, but for a lot of people (myself included!) the negatives are far outweighed by the positives compared to life pre-surgery. I do have problems and go through bad patches where I have multiple things going on that can drag me down, but I think it is important to remember that stoma or not, we have bad times in life & bad things we would not necessarily want to deal with if we had the choice.

The things that affect me personally (but might not necessarily affect everyone with a stoma) are as follows:
  • Fatigue (this is ongoing & I rarely feel refreshed or fully rested…I think a lot of this is just chronic illness related)
  • My stoma is very narrow and tries to heal itself shut at my skin level, so I have to medically widen it daily which can be painful and very tough mentally
  • Diet – my stoma can be very temperamental and okay with something one time that might actually upset it the next. I do have to watch what I eat and can’t eat a lot of wholegrain, vegetables or popcorn to name a few things. I try to find ways to get fruit & vegetables in such as smoothies. In general, I can actually enjoy food though and have an appetite.
  • Mental health worries & anxiety – Because of my job working in accounts, I do get very nervous especially going into client meetings because of unexpected noises coming from my stoma. This is one example of how my stoma affects me mentally and managing to push through that and smile all day, especially behind the scenes, can be super tough & is one of the things I struggle with the most.
  • Leaks! I don’t often get these thankfully, but they can still be soul destroying. I ensure I carry spare stoma bag supplies with me wherever I go & finding the right bag goes a long way to helping to minimise leaks. I also use some flange extenders underneath my bag around my stoma if I’ve been more prone to leaks to give me a bit of peace of mind/extra security against them happening. Please feel free to message me if you would like to know more about this (hashtagstomabags@gmail.com)
  • Scar tissue pain (adhesions)

 

Every experience is different!

It is vital to remember that everyone’s experiences of having a stoma are different. If you are struggling at any time, either pre or post surgery, you are not alone. Things may seem that way, but there is always someone out there to talk to. This can be a stoma nurse, a family member, a friend, online support groups, blogs and local support groups to name a few. I find it very helpful that if I don’t feel like I can leave the house or speak out loud much when I struggle that I can always type my concerns out to people who will listen online.

Obviously every one will have their own complications and/or things that affect their ability to go about daily life with a stoma. It isn’t just a simple fix of telling yourself to think positive & magically everything will be better, regardless of what some people may say. However, I do believe that trying to be positive & remind yourself that bad times do not last or define you can help a lot. Venting or ranting to someone who cares can also make a big difference when things are tough.

Having a stoma is life-changing & understandably something that will take a lot of getting used to. I believe focusing on what it has helped you with and has given you can help you make the most out of ostomy life.

Having a stoma may also bring new matters into our lives to consider, but in the vast majority of cases will also take away a lot of the previous problems.

You own your bag, it doesn’t own you ♥ 

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