Amy talks about the struggles of having an ostomy

I'm Amy & for those of you who don't know me, I am part of team Comfizz. My job is all things social media & marketing, with a bit of customer care thrown in too, answering your calls & queries!

I've nearly been in my Comfizz role for a year now (time flies, right?) I am a seasoned ostomate, having had my permanent ileostomy formed in 2011 due to Crohn's Disease & a large, benign tumour, the size of a watermelon which nearly cost me my life. I was diagnosed with Crohn's Disease at age 7, but had symptoms from as young as I can remember & my Uncle also had Ulcerative Colitis and had had a stoma for around a year before we unfortunately lost him in 2012.

I have been a part of the Comfizz family since early days post-surgery, using our garments which have transformed my everyday life and confidence, and been part of different projects and you may have seen my blogs in the past too, back to when I used to write posts freelance for Comfizz.

I also run my own Instagram, @ibdwarriorprincess, which I've been working on since January 2020, to help others' to feel ostomy confident, raise awareness, educate others about having an ostomy, mental health, share body confidence tips and fashion tips and give others' a voice and someone to talk to.

I also like to make the most of ostomy life and make my Uncle proud, but also share the reality of having an ostomy, because like life in general, it is full of ups and downs. Some downs are deeper and take longer to process than others, but in this blog post I am going to share my experience in a number of struggles, shown as different paragraphs below. 

**Disclaimer and trigger warning - this post is from my own experience as an ostomate only and discusses a multitude of sensitive topics such as mental health, grief, suicidal thoughts, discussions of having children. There are also graphic images from my journey. Please proceed to read with caution and I urge you to seek support if you feel you may need it via a stoma nurse, asking your GP to refer you to counselling or other support they may feel you could benefit from or even just reach out to the community on Instagram or online or myself at amy@kavendor.com. Nothing in this post should be taken as medical advice and if you can’t talk to someone familiar, please make use of the Samaritans helpline (which is free): 116 123. Or there are other ways to get in touch if you can’t verbalise it.**

Grieving who you were or could have been before ostomy surgery

This can be quite triggering for me & something I've found difficult to come to terms with. From as young as I can remember, being ill has been a huge part of my life & has meant I missed out on a lot as a child & a teenager such as school trips, being sociable & going to sleepovers. I ask myself questions such as "what if I'd have had my ostomy much earlier?" and it can be hard to not get focused on this. 

Because I was ill from such a young age, having had symptoms from 3 or 4 years old and getting a Crohn's Disease diagnosis at age 7, I didn't have much chance to find out who I was, to create myself or explore my likes and dislikes without my illness having a big impact in that.

I also have wondered what I would be like without my ostomy and what things I might have done instead, but this can be a dangerous thought train to jump on and wondering all these things won't change the reality. 

Over the years since my surgery in 2011, I've come to learn to accept my ostomy & to make the most of what I can when I can. My ostomy saved my life but this doesn't mean that I don't experience bad days or feel grief.

How even a small space of time can make such a difference

As the years have gone by since my ostomy surgery, I've thankfully got to know it pretty well & have a pretty good idea of what can impact it & to what extent. However, there are a handful of days every month where my ostomy does what it wants & I can't seem to trace the reason. I can go from having what is "normal" output for me to within an hour having a really upset stomach & having to empty my bag much more frequently because of liquid output. 

I also struggle with fatigue, mainly down to my Crohn's and iron-deficiency anaemia, but from having my ostomy, it can be hard to absorb some nutrients or get iron in my diet as I don't eat lots of red meat and iron-rich vegetables. I do take liquid iron too. I'd say fatigue is definitely one of the things I struggle with the most and this can also impact my mental health and my ostomy. If I'm really struggling with my fatigue, my ostomy can get to me and get on my nerves more than it would if I wasn't so fatigued.

Scar tissue is also something I have from surgery which can creep up out of nowhere and is very unpredictable and painful which I will discuss in this post.

How surgery can cause other problems

No two people are the same who have had surgery and it's important to remember this. My surgery saved my life and I'll forever be grateful that I'm here typing this today. I do, however, get bad days where things I struggle with that I probably wouldn't have to deal with without my ostomy or my illness do get to me. Yes, my surgery saved my life and I'd rather be alive to deal with what I have to deal with now than be in a box, but surgery always comes with risks & potential complications that you potentially & do have to adjust for.

Receiving an iron infusion for iron-deficiency anaemia

One of these complications for me which is very common after major surgery in the pelvis is scar tissue (also known as adhesions). This pain can creep up out of nowhere for me & leave me feeling helpless & in agony, curled up in a ball trying to control my breathing & decide what pain relief to take that will irritate my stomach the least or not slow it down too much.

How mental health is impacted by having an ostomy

Mental health & ostomy surgery, in my experience, go hand in hand. There is definitely not enough support for mental health post-surgery in my experience and understandably, having ostomy surgery can impact mental health, whether that be from hospital experiences, getting used to your new "plumbing" or merely just from having such a big surgery. Being vulnerable and honest with you all, for the first few days after surgery I begged to die because I was in a lot of pain, experienced severe sickness (which I have a phobia of) and couldn't see things getting any better. I was so tired of fighting and felt like I had nothing left. Slowly, days 4-5 in my recovery, things started to move in the right direction, the light started to appear again and I'm so glad I didn't give up my fight.

These photos were taken on the same day, hours apart. Always be kind.

There is the relationship as you recover that you have with yourself and your altered body, the thoughts you process that can come in waves of grief through going through such a change and losing some of your organs, the relationship you have with others and wondering how others see you and so much more to try & unpack. I have, luckily, been able to have paid therapy sessions over the years which have helped me a lot, but it can still be a constant effort and a hard effort on the bad days to know where to place all your thoughts and how to process them.

Doing things to look after myself and making sure I know when to rest really helps my mental health and I will say that my mental health has a lot more factors to it than my ostomy surgery.

How big questions are understandably part of the journey

There are a lot of big questions that can come to mind with having an ostomy such as "what would I feel like if I'd never had this illness or an ostomy?, Do I have to give up on my dream of having children?, Do I have to give up on my dream career? What about that massive opportunity I couldn't take because of a flare-up?" and so on.

Images from before my surgery, my diseased colon before surgery, A & E before surgery and after my surgery (hours after & a few days after).

These are all huge questions, some of which I'll never get the answers to, but they are still understandable and all so valid. It's okay to wonder. It's important to remember though that your mental health is just as much of a priority as your physical health and they do go hand in hand. The online community such as Instagram is great for speaking to other ostomates about your concerns and worries and at Comfizz, we are available to reach out to via e-mail: info@comfizz.com. Also, I'd definitely encourage you speaking to a stoma nurse about mental health support or your GP and seeing if you van be signposted to the right place.

How fatigue can feel all-encompassing

If you know, you know! Fatigue is not just feeling tired, it is beyond feeling extremely tired and also feeling like a walking zombie when it's really ramped up. Symptoms of extreme fatigue include chronic tiredness and sleepiness, headaches, sore & aching muscles, slowed reflexes, irritability, appetite loss, poor concentration & low motivation to name a few.

I often have low iron levels, as mentioned previously in this post and this definitely feeds into it. Fatigue isn't just a physical thing. It can takes its toll mentally, emotionally and on everything in between. For me and a lot of people, it's a battle between knowing when to rest vs when to push yourself & I constantly plan takes around how much energy I may or may not even have when it comes to it. I take some control in my own ways but also do not set my expectations too high because I know that something often has to give or be adapted.

Gynaelogical health and how much this can be impacted

As with everything with an ostomy, it is different for everyone. The same goes for Inflammatory Bowel Disease (IBD), which Crohn's Disease is a form of. Crohn's Disease caused delayed growth & puberty for me & has also impacted my periods, sex drive and gynaelogical health. 

Before and after my ileostomy surgery, nobody discussed the significance and/or potential links between extensive pelvic surgery & problems or things I would be faced with such as fertility concerns & painful periods. Nobody told me about how scar tissue will develop until I did my own research & queried this. I believe that I really did and do deserve more support than that & that we all do.

Scar tissue (also known as adhesions) after bowel surgery is very common. Adhesions are bands of scar tissue that form between places such as loops of the bowel which are normally not connected. These can develop when your body is healing from any disturbance to those parts of your body such as after bowel surgery. Adhesions can cause no problems for some people or very minor problems but can also lead to chronic pain, infertility, bowel obstructions and can also make future surgery in the affected area more difficult. It is important if you feel you may have a bowel obstruction to get medical help immediately. Signs include no ostomy output and/or instead throwing up faecal vomit and severe abdominal pain, a temperature and a swollen abdomen.

How a lot of decisions surrounding your ostomy just become the "norm"

Living with a chronic illness and/or ostomy understandably takes some adjustment and has different impacts on different people to varying extents.

Things such as fatigue, anaemia & scar tissue pain when it escalates impact a lot of decisions in my life. Even though it's part of my "norm" and my reality now, just like brushing my teeth or changing my ostomy bag every day, it doesn't mean it comes easily. I do get days where it can be all consuming & that I do wish I could have a break, but on the other hand, I am here to be able to deal with these things & I count my lucky stars every day for that because as the years go by after ostomy surgery, these are just things that often feel insignificant if they enable me to embrace life with my ostomy and do things I could have only dreamt of pre-surgery.

How the future can be both worrying & exciting

Having an ostomy and a chronic illness can be quite the paradox of emotions, especially when it comes to thinking about the future & there being so much unknown. The unknown is a part of everyone's lives and although this is true, there can be a lot of fears which can amplify this feeling such as wondering if your chronic illness will "flare up" (symptoms and inflammation become prevalent/more prevalent and severe). Wondering what options you could or could not have to treat these can be scary and having had surgery for my disease and losing part of my digestive system already, having more surgery is a big fear of mine.

However, I have been working on being more present and enjoying the "now" because as much as we worry, what will be, will be and I'll do what I can to maximise my chances of not becoming poorly again such as taking good care of myself and all in all hoping for the best.

How "when are you going to have children?" is (wrongly) a common question

Although most people mean well, it is wrong to assume people want, let alone can have children without it causing more problems and being very risky for a potential Mum, baby or both. I know I have many questions about this that don't have an easy answer and unfortunately and sadly, support surrounding this is extremely lacking, especially if you haven't been proactively trying for a child for at least a couple of years. I know that nobody can predict the future, but I've been looking around for people to discuss my concerns with and the closest I got to this was speaking with my consultant who was very dismissive of my concerns and reasons for them.

For some, children aren't everything and that's okay. You shouldn't have to have children to be seen as being successful in life and you are more than whether you can/choose to bring children in the world if you are able.

How sometimes you feel defined by your ostomy

Understandably, you can sometimes or most of the time feel like your illness and/or ostomy define you. If you've been well and fallen ill or been well & ended up with an ostomy because of an accident, for example, it can be hard to accept. Likewise if you have been ill for a long time and still find it hard to get to grips with your ostomy even years after surgery.

Balancing out the struggles - because it's not all rainbows & butterflies, but my ostomy gave me sunshine after the most horrendous storm...

For me, it's vital to remember that although my ostomy is more at the forefront of my mind and reality when I'm experiencing problems, thankfully it's a part of my life that I embrace where I can because it enables me to do so much. 

There is so much more to me than my ostomy and because of it, I have been able to create myself, find out my style, explore & travel, grab amazing opportunities with both hands, go to gigs, pursue my passion of singing, adopt a dog and enjoy playing with her and walking her and everything in between, get married and embrace married life, enjoy food & drink, be in less pain less often and my ostomy has enabled me to not just survive, but live.

As I said earlier on in this post, this is just my experience of living with an ileostomy and I haven't written this to scaremonger anybody or sit there and say "this is definitely going to happen to you because it happened to me" because everybody's ostomy story is different. 

I wanted to write this post so that if you are struggling, I see you & I struggle too. People often say that I am so bubbly & optimistic & seem like I've got everything together when in reality, just like any other human, I cry, drag myself out of bed sometimes and really do not have everything together, I am winging it and just being the version of myself I want to be & nourishing that where I can. 

It's okay to struggle and not see an ostomy as a blessing, but that doesn't mean you never will. It doesn't mean that you'll never get to a place where you can accept your ostomy or even just take it or leave it but understand that it's part of you & it was created to help, but hinder you and for some people, save you.

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