Bravery, Recovery and my Weight Loss Story

 

I often look back to my night out in Malia on my holiday with our family friends last summer. I think it’s fair to say I drank a lot that night and my memory of the night is kind of fuzzy, but I remember at one stage drinking a large blue drink out of a teapot. Anyway, the next morning we were all very hung over and I was nibbling on a plain piece of baguette and my brother and one of the other boys were telling us about how their shit had come out bright green that morning. No-one else seemed to have experienced this and everyone laughed at them and told them how that wasn’t normal, but for some reason I was too scared to say that mine came out bright green too. I wonder why I thought it was okay for the boys to talk about their green shit, but not me; perhaps I thought it was unladylike. But now, after being diagnosed with Crohn’s, I truly feel brave enough to say that I, Lucy Aitkins, did a bright green shit after my night out in Malia.

If there’s one thing my experience with Crohn’s has permanently changed about me, it’s that I would now consider myself a brave person. Whenever I look back to all the emotions I faced during my diagnosis process, I feel really proud of the way that I handled it. Sometimes it upsets me to think about how worried my parents must have felt and I think that they were really brave too. When they took me back to university in the few days before my colonoscopy to see my friends again, they took me to the Gourmet Burger Kitchen in Sainsbury’s; I demolished my burger and milkshake with no problem, but as were leaving through the supermarket, my nausea was so severe that I was retching really loudly the whole way down the escalator, trying desperately not to throw up. I probably looked very odd to everyone in that shop and it probably put them off their food. I eventually threw up right in front of my parents when we got back to my house and they cleaned it all up for me. I can imagine at this stage they really didn’t want to leave me half way across the country, but they knew how much I wanted to be there and I think it was brave of both them and me to do that. I believe that it’s important to be proud of all your achievements, even if it’s for problems you weren’t expecting to have to overcome. Each step towards my recovery has required bravery and it amazes me the drastic improvement I feel within my fitness and health as each week goes by.

My weight loss

Weight loss is a big factor of my experience with Crohn’s and I have already spoken about it across my previous blogs. However, now that my weight has balanced out and I feel more confident and healthy within my body, I feel like I am ready to truly divulge the way it impacted me. I understand that weight is a sensitive topic and it affects many people in different ways, but I do want to talk about my experience in case it may be able to help some people. As someone who had lost potentially around 10 kilos (in the first blog I’d said it was over an eighth of my body weight, but I reckon it was closer to a fifth), and then put about half of that back on again over the space of a couple of months, I’m aware that this can cause conflicting emotions and be confusing, and it can also cause you to have a complicated relationship with food.

I’ve always known that I don’t have an eating disorder, but when I realised I was losing weight and I wasn’t sure why, and I was suffering from loss of appetite, nausea and sometimes physically being sick for no apparent reason, it did confuse me a lot. At times I did wonder if there was a such thing as having subconscious eating disorders; I thought that I was allowing myself to throw up too easily so I started holding it in and throwing up in my mouth sometimes. I was aware that to others it may have looked like I had an eating disorder, but I made sure I frequently ate in front of my friends and I usually told people when I threw up. The idea of throwing up and not telling anyone felt worrying to me.

Also, the loss of appetite really confused me and caused me to have a strange relationship with food. I really hated food shopping. Looking at the food as I walked down the aisles sometimes made me feel really sick and I wouldn’t want to buy anything that I saw. Therefore, I’d often come home with very little food anyway and nothing that I could make a healthy meal out of. Sometimes it would make me really angry when they advertised food on TV. I didn’t understand why they were allowed to do that because I didn’t want to look at it and it made me feel sick. On the other hand, my loss of appetite wasn’t constant and I went through a phase where I really enjoyed watching cooking shows. I haven’t quite pinned down why I did this because I still wasn’t cooking any of the food due to my lack of energy. I always consciously tried to eat a healthy amount of food each day in an attempt to stop myself from losing more weight. But a lot of the time I really didn’t enjoy eating -  and looking back retrospectively, having regained my appetite, it’s sad that I’d lost my love for food because food can be really exciting and a great way to relax; it should be enjoyable.

I definitely didn’t try to hide the weight loss, on the contrary, I think the skinnier I became, the more revealing my outfits seemed to become. Perhaps initially this was me showing off my new tiny waist, but gradually I think this became my own coping mechanism for me to feel more confident in my changing body. For example, one time, when my boobs had started to become really small and I had noticed my bras weren’t fitting properly anymore, I just wore a sports bra with no padding and tracksuit bottoms to sports night and said I was dressed as Sporty Spice. 

Now that my weight has stabilised and I’m looking and feeling healthy again, I wish I could say how much weight I had actually lost before I was diagnosed, but the truth is, I don’t actually know the answer because I was too scared to weigh myself at my lowest. When my parents picked me up from university so that I could see a doctor, I think I only weighed myself once and it was so much lower than I was expecting that I really didn’t want to know what it was again. My weight had become so much out of control and I knew it would continue to go down, so at this stage I think I was definitely scared that it would never go back up again. I never dared tell anyone this, but in the two weeks between being told there was a chance I had bowel cancer and having my colonoscopy, I had scared myself with the fact that I was aware my weight had been going down since my holiday to Crete last summer, so if it was cancer, I wouldn’t have caught it early. My mum had wanted to weigh me the day before my colonoscopy, in case the doctors asked for my weight and she said that I wouldn’t have to look at it and she wouldn’t tell me what it was, but I was so distressed about my weight I really didn’t want anyone to know and I burst into tears. At the time, being able to put the weight back on seemed impossible to me and I really was scared that I was just going to waste away and never get my adult body back again.

From the point that I began receiving treatment in hospital, my weight began to go back up again. I didn’t like looking in the mirror; I didn’t like how much my body had changed since it had been healthy and it reminded me of how ill I was. I was given protein shakes whilst I was in hospital and when I came out I started drinking full fat milk, furthermore a side effect to my medication was increased appetite, so I was constantly eating as much as I could. I was reassured that this was enabling me to put weight on and felt confident that I would be able to return back to looking like my normal self. Now that I have reached a weight that I am comfortable with, it feels odd after a year of being able to eat whatever I want with my weight still going down, and then being told it was a good thing to eat whatever I want, to now have to return to a more normal diet. I have just been told to begin a low fibre diet, which basically means I don’t have to eat fruit or vegetables. Consequently, I now have the ultimate excuse not to eat Brussels sprouts at Christmas, but it’s strange to think all the foods that I grew up thinking were healthy are now some of the worst things for me to eat.

A huge downfall of the weight loss is that I have subsequently lost a lot of muscle. As my energy levels have been increasing and I’ve attempted to start exercising again, I have really noticed this – when I first tried, I couldn’t even do one sit up. I have also been having lots of fun dancing around the house, but have found there are a lot of steps that I can no longer do and have ended up falling on my bum multiple times. My fitness has also decreased and I get out of breath really quickly, so I think recovering from this will be a long process. Nevertheless, I feel immensely healthier than I did a couple of months ago and am really appreciative of all the things that my body can do. Furthermore, I now feel confident that I have enough strength and energy be more independent and to return back to normal life.

My recovery so far

I was really fortunate in that my Crohn’s was diagnosed towards the end of my second year at university. This meant that I have been able to take the whole summer to recover and won’t have missed out on any time studying for my course (not that I was doing much studying last year anyway). I think that the tiredness and anaemia had previously messed with my mindset and I really wasn’t bothered about getting good grades in my exams, but now that I’m feeling better I really want to make the most out of the academic opportunities that university has to offer and achieve the best overall grade that I’m capable of. I think the healthier that I become, the more I realise how ill I actually was before my diagnosis, because feeling the way that I did was what was normal to me before.

There are two things that have really helped me keep a positive mindset whilst I’ve been recovering. The first has been talking to people, particularly my parents and telling them how I’m feeling not only health wise, but also within myself. I am fortunate that my parents have enabled me to be so open and feel comfortable talking to them about how I’ve been coping, as well as not minding me telling them how many times I’ve been to the loo each day and describing its consistency. This is something that you get used too after you’ve been diagnosed with Crohn’s and it becomes less embarrassing, as after all, it’s the illness that’s causing it so it feels less personal to you.  

The other thing that has really helped me manage my emotions is creativity. I have always been a creative person, I am an English and drama student and also love dancing and singing in my spare time. Writing this blog has really helped me to order my thoughts and understand my feelings, furthermore I have also been writing play, which has allowed me to explore my emotions through a different angle. I think it takes a lot of bravery to firstly admit your emotions to yourself, and then even more to discuss them with others and write them down, but I have really experienced the benefits of this. I was really nervous before I released the first blog because I knew that admitting to having diarrhoea was not attractive, but at the end of the day, everyone gets the shits sometimes and if more young people are able to talk about IBD’s, this could really encourage people to see a doctor sooner than I did, especially considering this is the age when most people are diagnosed.

In terms of my health, I have been feeling so much better over the past month. My energy levels have really been increasing and although I’m really unfit, I am now able to exercise again. I came off the steroids a couple of days ago and have had two infusions of infliximab so far, with my next one in a week’s time. I was really apprehensive of whether I would have enough energy to be able to be a volunteer at the commonwealth games this year, I had my interview for it back in September and it was something I had been really looking forward to. I also had a bone density scan and another blood test, as well as an infusion booked in at my local hospital during the period I was supposed to be volunteering. Luckily, as my parents are so wonderful and supportive, they were able to drive me backwards and forwards from Birmingham so that I was still able to do it. The cricket stadium where I was volunteering was a half an hour walk away from my university house and I was worried that just the walk itself would be enough to tire me out before I even started doing any work. Nevertheless, I didn’t let this stop me giving it a try, and despite at the beginning feeling completely wiped out by the time I got home, I managed to do all of my shifts and no-one even noticed I was ill unless I had told them. I did feel quite awkward at some points when I needed to sit down and all the old ladies around me were still standing up, but I needed to remember that it was okay to feel tired and I shouldn’t be embarrassed, and I was really proud of what I had achieved.  

The main thing I’m struggling with in relation to my recovery at the moment is feeling insecure about the way my face currently looks as a side effect from the steroids. They’ve given me acne, which is quite aggressive at the moment, but this doesn’t affect me too much because I can just cover it up with makeup. The thing that is playing on my mind the most is that they have made my cheeks and neck really round and puffy. I don’t necessarily think that this looks particularly bad, it’s more that it’s not what I look like and I want my face to look like me. Especially as it’s my face; it’s the first thing that people see when they look at me. I particularly don’t like the way that it looks in photos and I feel like it’s accentuated when I smile, so I haven’t really taken many photos of myself over the past couple months. I have come off the steroids now though, so I’m hoping that this will come down soon. I know that I’ve been talking about bravery in this blog, and it doesn’t seem brave to feel insecure, but everyone has insecurities and everyone is brave in that they are able to carry on with their lives regardless of these. Furthermore, I appreciate that my puffy face has come as a result of my medication which has made me feel healthy and kept me out of surgery, so it really is a good thing.