Mum, Professional, Colitis Survivor, How Self Care Saved Me!
As a married working woman with two children, sitting still was never in my vocabulary, that is until I was struck down with Ulcerated Colitis. I don’t want to bore you with the details here, but this illness was categorically irritated by stress, and boy was my lifestyle stressful.
Suddenly on top of negotiating a very busy job and being there for my family I had to cope with changes around everyday tasks that I had taken for granted, ‘what if I can’t find a bathroom, what shall I eat, when should I eat?’ If I wasn’t working, taxiing the kids, washing, ironing, cleaning & juggling to try and keep everyone else happy, I then put myself through the gym and running to try keep myself fit! The demands I put on myself as a modern woman, to be that superwoman did not work with Ulcerated Colitis, something had to give.
Over a period of 15 years, bouts of Ulcerated Colitis regularly took me down. I was prescribed numerous drugs, some did nothing, others I was allergic too and when I eventually found a drug that really worked Infliximab – the NHS withdrew it as a treatment! Eventually I was living on steroids, then taking other drugs to repair the damage the steroids were doing to me!
After the death of my dad, and a change of job, my Ulcerated Colitis was out of control. Indeed I felt totally out of control in so many areas of my life, I was left with no option but to have my large colon removed. After much debate and continuous soul searching I chose a surgeon that agreed to do the procedure by key hole surgery. I can clearly remember that a Monday was the date set ,and by the Wednesday following the surgery, I was already feeling so so much better. It’s amazing how you adjust to being poorly, it’s not until you start to feel better that you realise how poorly you were.
However, the next few months were mentally and physically stressful. I had to try and learn how to accept the fact that I now had an ileostomy bag attached to my stomach which was constantly functioning and working. I was conscious of the noise it made, I was conscious that people would see my bag, I was constantly on alert that it would leak and I had to accept I was no longer able to wear certain clothes!
It felt like such a small thing to be worried about, but it was so very important to me, I love clothes, fashion really was and still is a passion for me, this was extremely hard and I hadn’t anticipated this impact. Although I was starting to feel so much healthier, and I was learning what to eat, and what not to eat, the thought of living with a bag strapped to my stomach for the rest of my life was unthinkable.
I returned to work 8 weeks after the surgery and started to resume a normal working life and the family routine seemed to naturally appear, unfortunately It wasn’t long before I was back to living at 110 miles per hour. However, after a holiday to Turkey where we went on a boat trip my bag leaked, I sobbed for an hour in the toilet and my husband tried his best to console me, and helped me sort myself out. It was at this point that I made a huge decision, I was going to elect to have further surgery and have a j pouch constructed from my small intestines.
To be fair, after 12 months of living with my bag and stoma, now affectionately nicknamed ‘Sid’, I was learning how to take care of myself and my new system. I had got better at disguising Sid, and had found some great clothes as well as starting to do some physical activity. However, although I felt so much better in myself physically compared to the previous 12 months, I was now pain and drug free, emotionally I still struggled with Sid, and wasn’t happy that he was a part of my life.
The surgery initially went well, and a temporary loop and ileostomy was made, however my body had other ideas and decided it was going reject the ileostomy. It constantly blocked, backed up and I was suddenly a very very poorly lady. I was in hospital for 8 weeks, I lost 2 and a half stone in weight. My specialist surgeon said he wanted to move onto the next stage sooner rather than later as I was so ill, so the next procedure to connect my pouch to my small bowel went ahead. Wow! Within a week I was feeling so so much better.
This was the start of my SelfCare journey. To remain emotionally and physically well, I had to start and look after myself, properly. It was almost like starting from scratch.
The fuel I put into my body needed an overhaul. My diet had to start with very bland plain food. I had to learn what I could eat and drink and what exercise my body could take.
It was slow progress, I started to learn about vitamins, taking time out for myself, and basically just stopping every now and again, not something I have ever been good at or used to doing!
SelfCare is also walking my gorgeous labradoodle dog Mali. I have always wanted a dog. Whilst working full time this wasn’t possible, but I had to seriously reassess my life.
I had to actively monitor my stress and take responsibility for how my life was going to look like.
I am now self-employed and work part-time. I totally love it and this also enabled me to bring Mali into my life. Walking her keeps me fit, it helps me to plan and structure my day, and those walks every day are my time, unless I choose to let others come with us on our walks.
I was keen to be involved with SelfCare Psychology from the start, I want to enjoy the rest of my time in this world, and although I don’t have a commercial or academic relationship historically with SelfCare, I have a very real and personal one due to my physical health. I have learned a lot, this body that we can sometimes take for granted can break down, we need to take responsibility for it and this was an alien concept to me, but I am getting there and SelfCare Psychology now enables me to encourage others to do so. That’s a gift, an all-round win win!