As we all know it was recently World Mental Health Day. I’m taking this opportunity to talk about the issues I’ve been facing as a result of IBD. I’ll be talking about my coping methods as well, in the hope, it can help others. My anxiety started pretty randomly, suffice to say it was a hell of a shock! The feeling that you’re alone, the worst will happen and no one can help you are some of the worst feelings a person can think, anxiety makes you ‘believe’ this too. Basically, I was on a treatment for Crohn’s called Infliximab. It was an infusion via IV that was due every 8 weeks in the day care ward. I can’t really remember the age I started this drug, I think it was around 15.
In my eyes, Infliximab was great. It took around a couple of months for me to feel the benefits but it was worth the wait. My inflammation went down, I was less fatigued, I had more energy and a decent appetite. For the first time in a very long time, I felt amazing! However, this only lasted for a matter of months. By the time I had my 5th or 6th infusion my body had started disagreeing with the drug. I would be itchy literally all over and before I knew it the reaction grew worse. I can’t really describe in detail what happened as even talking/writing about it triggers my anxiety. At this moment in time, the initial reaction didn’t bother me one bit, it was more about the fact that the one treatment that actually helped me I wouldn’t be able to have again. Anyway, Infliximab was stopped and for the rest of my time in Paediatric care, other drugs and courses of treatment were trialled.
I fell very ill again when in adult care. At this point, I was on Adalimumab (more commonly known as Humira) which was a weekly injection. This didn’t help at all. The doctors had said pretty much all my bowel was inflamed and I’d need it all taking out which would result in a Hickman Line. You can imagine at the age of 17 what this news did to me. I would not allow that to happen. I begged for the doctors to let me try Infliximab once again as it helped me more than any other medication I had ever been on. After some time my consultant very reluctantly said yes to let me restart Infliximab. He said I’d need a setup and a nurse with me the whole time throughout the process, bearing in mind I was already in the hospital when this was happening. So, my first Infliximab infusion went fine to everyone’s surprise. A couple of weeks later I was discharged with a date on when to come to the day clinic to get my next infusion. The next two infusions again went smoothly as I was given something beforehand to help prevent sickness and reactions. Soon after I was due my 4th infusion, I was looking forward to it as I was feeling good again! It was too good to be true, sadly. Literally 10 seconds into my infusion my chest rapidly grew tight, I started feeling very weird and was struggling to breathe. It was like I don’t know how or where but I managed to get the energy to look at my mum and the only word that came out of my mouth was ‘mum’. She called the nurse who came running over and she switched off the IV machine. Another nurse went to grab an oxygen machine and all the equipment. Between that time I had thrown up twice, it still baffles me when I try to figure out how that happened. After a few minutes on oxygen and a long nap, I was allowed to go home. On this day I accepted the fact I would never be able to have Infliximab again.
Again, the reactions and the fact I was allergic still didn’t bother me. Soon after I was put on Certolizumab another injection which I’d take fortnightly. Whilst on Certolizumab I went to America. It was clear I was dealing with my experiences well despite the cards I had been dealt. I was doing well up until a few months later. All of a sudden a panic attack came on whilst I was on my way to college. I felt like I was having a reaction again, this time to nothing! A few times my panic attacks ended up with me in A&E. Doctors would ask me ‘did you feel anxious’ I replied with ‘I don’t know, I’ve never experienced this before’. Which was true, I never knew what anxiety felt like until then.
Since then I have had panic attacks on a regular basis and still have them regularly now. I was referred to liaison psychiatry to help overcome the anxiety. After several appointments, it didn’t help. I thought it did but as soon as I was discharged it would develop again. I can’t help but think ‘what if I have a reaction to this’ or ‘if I eat too much of this or drink too much of that I may develop an allergy’. I’ve grown intolerant to a few things since getting Squishy and obviously, those experiences didn’t help my anxiety one bit. Coffee makes me feel very hot and a little breathless and chocolate gives me severe food poisoning. Naturally, I now doubt everything! I can’t help these thoughts and I always struggle to control them. However, I have developed coping methods which I feel help.
I can’t eat alone which isn’t the best and I’ve only just managed to cope being home on my own. This makes me quite anxious but I use the following to help ease it:
- I always make sure I’m with a person I know whenever I eat. I prefer being in a place where there a quite a number of people. For example, eating at work I can deal with more easily due to it being a busy environment.
- I make sure I have something to do whilst eating or drinking, this may be reading a book or article, typing a blog, listening to music or watching something.
- If I feel a panic attack coming on (sometimes they just come on from nowhere such as just sitting at my desk or when someone is talking to me) I remind my self to take deep breaths and I always try to get up and go for a walk and preferably for some fresh air.
- Affirmations, I always try to remind myself that I’m actually okay. Affirmations such as ‘I’m healthy’ ‘I feel good’ and ‘I’m breathing just fine’ actually help. I try to get into the habit of saying these to myself every time I feel anxious but sometimes just following the above steps help me enough.
On top of the anxiety of food, drink and any form of medication, I also suffer from social anxiety. If I’m somewhere completely new I get very nervous and sometimes even end up turning around and going home. If I’m in a place where there are a lot of people and I know no one, I get anxiety and have to follow my coping methods to help me feel better. This is one of the reasons why I wear my headphones a lot. Music helps me ground myself and remember where I am and what’s happening. I recently started the University of Leeds. My first few days of attending I had really bad panic attacks when turning up, I’d have to stop my journey and calm myself down before carrying on. I stuck with it and ended up enjoying myself. A few weeks in I’ve managed to get along with those in my class and manage the panic attacks.
I’m a great positive talker. I always know how to advise others on how to cope, manage and believe in themselves. Unfortunately, I’m not as good to give myself that same advice. All in all, I know that we all have the ability to cope with anxiety. Some of us take longer to learn the method than others and some of us find it easier. Personally, I refuse to take medication to help with anxiety, purely because of the thought of a reaction happening. I feel like my coping methods work in the short-term and I’m still attending psychiatry to help me cope in the long-term. I hope my coping methods help you if you find you suffer from panic attacks and if you don’t have anxiety, hopefully, this blog helps you understand how mental health is affected by experiences and what anxiety is.
Love and light,
Guts, Giggles & More x