It is #WorldOstomyDay so I thought I would write about something that affects many IBD and stoma patients, which is anxiety and / or depresssion. It is a taboo subject that needs more exposure so instead of telling my stoma story I thought I would share this important message instead.
Knowing you are booked in for surgery is a scary time, no matter what surgery or how many you have had previously. The nearer it gets, the more nervous I am. I have had other scarier surgeries where I was extremely ill, but it doesn’t matter, to me this next one is just the same. One of my worries about surgery is getting through the anaesthetic, I always think that maybe I have developed a heart complaint since last time and I might not make it. I know it is probably irrational ( notice I say probably, another one of my things is if I think it will go ok , I jinx it) It doesn’t matter that I have a pre op, that just makes me think they missed something.
I have high anxiety levels, when I had counselling they said it was very high. I have lived with anxiety for years and had panic attacks if I was in a situation my mind couldn’t cope with. Luckily with meds the panic attacks are much less severe ( I used to actually be sick and that caused more panic when I was going anywhere in case I was sick). This seemed to all start when the ulcerative colitis started, I would panic incase I needed the toilet when out, or if I started with a flare I would worry how ill I could become, as my first few flares were terrible and I was in hospital for ages, and being in my early twenties and never having been in a hospital before, I found it very overwhelming and scary. I thought I would die. They didn’t know what was wrong for a while and it was awful, so I am sure that is why I became the way I did. It ended up that if I was going anywhere away from my normal life, the panic would set it. I went to see We Will Rock You in London with some friends and remember sitting there in this big theatre feeling very sick indeed and looking around searching for toilets. I got through the first half but in the interval we all went outside for a drink and a break, I just burst out crying saying I couldn’t go back inside the theatre bit. I insisted I would be ok in the bar on my own and waited there for them. I rang my sister and told her what was happening . She wanted to come and fetch me ( she lived in London at the time) but I decided not to as my stuff was at the hotel. It was weird that I felt slightly safer in a very quiet bar than go back into that theatre again.
The panic feeling lasted all through the night and all the next day, and it wasn’t until I got home that I felt better. This has happened to me many times and I would even turn down some invites away because I just couldn’t control the attacks.
I remember taking a plastic bag out with me on the simplest of nights out, just in case, and the counsellor said I was using it as a crutch and I needed to stop taking one out otherwise I wouldn’t get better. I totally understood the reasoning and gradually, along with meds ( although I think the meds did most of it) I improved dramatically. The only problem is I don’t ever want to come off them incase it returns, a vicious cycle. I have had to increase them occasionally since my initial surgery as depression sneaked in and I went through a very dark time in the hospital. You can feel yourself slipping, I have never had it before but you can feel it coming like a dark cloud and don’t know how to stop it. I couldn’t stop crying either and I wasn’t the only one on the ward to feel like this at times. I am glad that I am ok now, and I understand how easily depression takes over. It doesn’t make you a weak person, it means you are going through something that you need help with at that time.
The kind of surgery that I have had is traumatic and has big implications on body image, anyone who has had a major surgery, especially one where your body has been altered ( and I don’t mean cosmetic ) is a candidate for mental health issues and needs all the support they can get. I do think that we should get some form of counselling BEFORE the surgery and after. I know if it is an emergency then that can’t happen, but in my case I was an emergency, but knew stoma surgery could be a possibility the weeks leading up to it, and the doctor must have known that too, but it ended up being a very quick chat with a stoma nurse whilst I was on the ward ready for surgery the next morning
These are life changing surgeries and more pre care needs to be done to help patients come to terms with what will happen to them. I also feel that having IBD is life changing and more needs to be done to support those with these hideous diseases. I have been there and it’s not pretty. Helping the patients make the decision for stoma surgery is a must, you really don’t know if you are making the right choice to have one or not. If you had asked me if I would have had surgery sooner, the answer is a resounding “YES”. I was left to become so ill that the surgery became an emergency and the decision was taken from me.