Trigger warning: In this post, I discuss mental illness in some detail so before you read on, please do so with caution/self-care steps in place or avoid if you are mentally struggling. Remember, my inbox is always open on my Instagram and via e-mail: email@example.com. I also include mental health support links in my previous post & there is a Samaritans link at the end of this post. Please remember that the views in this post are my own only. I am not a professional and am in no way giving concrete advice. If you are worried, it is always best to consult a medical professional/someone you trust.
Understandably, having a chronic illness & having surgery of any type can have a huge impact both physically & mentally.
Mental health is something that unfortunately I have had trouble with since my early teenage years. A lot of it I feel definitely spans from having Crohn’s Disease for as long as I can remember, then needing my permanent ileostomy forming at aged 19 in 2011. There are other things I have experienced which have definitely been a trigger to my mental health struggles, & if anything my mental health became more of a struggle the more “normal” my life became post-surgery. When I say “normal”, for me that means actually been able to go about life that wasn’t spent around a toilet & forming some sort of daily routine that no longer revolved around my bowels!
Finding out about needing my stoma surgery
As I mentioned on my own blog within my “Coping Mentally With an Ostomy” post, finding out about needing to have my permanent ileostomy in 2011 didn’t come as a surprise to me, but the hospital staff were reluctant to rush into my operation as they were worried that mentally it would be a big change for me to deal with at aged 19. I was ready for this and mentally it was a lot to deal with, but the prospect of being in that much pain any longer pushed me forward to make my mind up to have the operation as soon as possible and hopefully start living my life. My stoma nurses were, and still are, a good form of support to help me not only deal with the physicalities of having a stoma but mentally too.
Of course, not everyone has to have stoma surgery for the same reasons. A lot of people understandably find the mental weight, and sometimes shock, of needing a stoma very hard to get past & need a lot of support & intervention in the run-up to surgery, as well as afterward. It is perfectly okay & normal to struggle coming to terms with having a stoma, & some people relate it to the grief amputees can go through when losing a limb. It may not be a limb you lose with stoma surgery, but it still is a part of you that you are losing, so to feel those emotions is completely okay & valid. Stoma nurses and your hospital should be able to provide you with one-to-one support, as well as reading materials & also some of the online support groups on Facebook or even finding Instagram accounts for those who have had surgery can be a great way to help you see that you will get through it. To follow my Instagram on my stoma journey in more recent years (since January 2019), you can check out ibdwarriorprincess. I follow a lot of people who have inspired me, especially on my down days, & have listened to me & given me positive encouragement on the dark days.
Fast forward over 8 years post-surgery to 2020 – How am I today mentally?
I’d say in recent years my mental health has unfortunately been at its hardest. Not all of this has been down to IBD life and stoma surgery, however, so I must point that out first. I have suffered from a few things mentally. The main ones I have struggled/struggle with are Depression, Moderate – Severe Generalised Anxiety Disorder (GAD), Mild Borderline Personality Disorder & Post Traumatic Stress Disorder (PTSD). I specifically get increased anxiety in new places & because of a bad experience travelling with my stoma, I find it very hard (but not impossible) to get past the fear of it happening again. Being abroad with my stoma definitely takes a hit on my body with the changes in everyday life etc & it’s a fine balance between listening to my body & also knowing when to push myself so I can enjoy my holiday & explore things as I never could have dreamt of pre-surgery.
I think one aspect of why things have become harder the longer since I’ve had my surgery is because up until that operation, my whole life had been consumed by physical pain for as long as I can remember. Mentally, there was never much room or time for issues to crop up & taunt me because most days it was dealing with horrendous stomach cramps, not being able to keep warm, feeling sick trying to eat & to get through the day without crapping myself (whether braving it to head out in public or at home). Now that I have less physical pain, the mental pain of things has more room to cling on & really make its bed in day to day life, because there isn’t always a distraction of physical pain. I am so grateful for not having physical pain every day because I never want to experience pain anywhere near that level, yet alone constantly, ever again. I always think I would have found it harder if I’d have been healthy before my IBD diagnosis & suddenly had it taken away from me. In a weird sort of way, IBD being all I can remember as a young child/teenager almost became a “normality”, so from the offset, I don’t remember having much of a life to lose.
Still, I can get into very toxic thinking patterns such as comparing myself to other people. A lot of people do this illness or no illness, but I find that sometimes my stoma can make me feel even more unlike other people, and there are things it still challenges me with that I will never really get away from, and that is mentally draining and suffocating. I have had to try & reshape my way of thinking that being “normal” isn’t necessarily right, and just because someone looks like they have it together, that they’ll probably have their own struggles too. It is hard to look at other people sometimes & admire them but not compare yourself, especially when self-esteem is low from struggling mentally. A tip I’ve been given, which I try to practice most days is to look in the mirror and pick something that I do like about myself and focus on that. On the bad days, I struggle, but it is okay to have bad days. I also struggle with accepting that I missed out on a lot of things as a child/teenager because I was so ill, so my mind is almost on overdrive some days, obsessing over “making up for lost time” and in denial, for years I will never get back.
Having to dilate my stoma twice daily up until a few weeks ago for the best part of a year just about floored me. Dilation involves me widening my stoma because it is small & narrow, & it is just about as unpleasant as it sounds! Tying it in with bag changes, I found it was ruling each day. I would struggle to get out of bed because of my depression & low iron, then I’d have to do that before work. I’d then have a bubble bath on a night to try & relax before bed, & then I had to wind myself up again doing that when I changed my bag. It was making me so miserable & it was something I just couldn’t maintain long term, especially when one of my medical team told me to increase it to 4 times a day… I mean, there is absolutely no way I can do that mentally, let alone physically, with working full time & trying to live a life. Mentally, I knew from the first mention of it that it was a no-go and my stoma nurse empathised completely. For the last few weeks, I have put my mental health to the forefront more & I have decreased dilating. I haven’t done it now for a couple of weeks at all & mentally I am feeling clearer in that aspect. I saw my stoma nurse last week and she agreed that I know my body, know when to intervene & call the hospital if I feel it starting to significantly close up again so we can get on top of it. At some point in the future, if my stoma gets tighter again, I will need surgery, but I am putting my mental health first & listening to my body in every way I can to try and get some sort of “normality” back to daily life so that I stand half a chance of battling my depression.
My coping mechanisms
One of the hardest things about coping mechanisms I find is pushing myself to choose good coping mechanisms over unhealthy ones. On my bad days, all I want to do is shut myself off & sleep. On my worst days, I just want to disappear. I have struggled and still do struggle with suicidal thoughts, but I would describe them as more wanting to be out of the constant mental pain rather than dying. It’s wanting a way out. There are periods where nothing seems to quieten the thoughts & even sleep, where I can usually escape, won’t come as naturally. The vicious cycle then starts of wanting to sleep more often & for longer because as soon as you wake up, the mental weight is on top of you like a ton of bricks & gets so overwhelming. I always try & remind myself though that it is okay to really struggle & not even know how I’ll make it to tomorrow, so long as I find something to hold on to & just focus on getting through today, even if that has to be hour by hour or minute by minute. Often, it’s the small things that help, such as a sugary cup of tea, my teddy bears, cuddles, being bought my favourite flowers, a warm shower with some nice smelling shower gel followed by getting into clean pyjamas or standing by the window & breathing in the fresh air. Gigs are a great escape for me & greyhound cuddles! (Dogs in general help, to be fair!)
Since July 2018, I have seen a counselor frequently who is a great help & definitely is the voice of reason in my hardest times. He is beyond worth his weight in gold & without him, I struggle to see how I’d still be sat here writing this to be completely honest.
I always try to increase my self-care when I can feel things getting tougher mentally, and generally try to be better at looking after myself altogether. Often choosing to look after myself when my depression convinces me I don’t care about myself is the hardest part about self-care. Through counseling, I have been working on developing a better relationship with myself, so that choosing to look after myself isn’t as hard to choose. On my own blog, I wrote about 5 self-care tips to try.
It’s important to remember that self-care isn’t necessarily all cliché candlelit bubble baths & pampering. It can be choosing not to skip a meal, choosing to exfoliate over scratching, cleaning up stacked up cups & plates, putting clean clothes on, brushing your hair or teeth, drinking water when you know you need it instead of going for wine on an evening & choosing to eat for energy over binging on sugar for temporary highs.
Finishing off my mini MH series
If you’ve been following my mini MH series, a big “thank you” for doing so & I hope you have got something from reading them.
You can read the other posts in the series below:
You can also read my blog post, as mentioned earlier in this post, on my own blog coping mentally with an ostomy.
Remember, you are not alone. Even on the days where it may feel super dark, you are never alone & it will get better.
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.
I will be back next time for Comfizz blogging about something outside of the Mental Health topic.