What symptoms prompted you to seek help initially?
When I was 19, I started suffering from diarrhoea and abdominal cramps that got worse over a period of two weeks. I had visited a GP who had diagnosed me with IBS – purely based on my symptoms – and was prescribed antispasmodics. Two weeks after the initial symptoms began, I had reached a point where all I was doing was sleeping, waking in agony, going to the toilet to pass blood and mucous and then going back to bed to sleep. I was nauseous and feverish, and I’d stopped eating because I thought it made it worse.
When we went to A&E, I was seen very quickly. I was dehydrated, so they put a canular in my hand for IV fluids, and a couple of hours later I went for a colonoscopy. Ulcerative Colitis was identified immediately throughout my colon and rectum.
They started me on IV hydrocortisone and Asacol straight away, so I was expecting to be going home a few days later. Almost a week after being admitted, the treatment wasn’t working, so I was taken for emergency surgery to remove my colon, and to have a temporary ileostomy.
Did diagnosis come as something of a relief or did it make you worry even more?
To be honest, I was just relieved to know what it was. I’d never heard of Inflammatory Bowel Disease or Ulcerative Colitis so I assumed that it was just a case of taking medication and then I’d be better! Little did I know…
What help were you offered to deal with your condition – both physically and emotionally?
As I was in the hospital on the IV hydrocortisone, I was given a booklet about UC. The booklet was one of the reasons I had expected to be going home soon. It read as though a medication and maybe a few dietary changes would have me back to normal and able to lead a normal life.
After the surgery, I was referred to a gastroenterologist and was allocated an IBD nurse. They deal with any issues – flares, symptoms and treatment options. My IBD nurse had suggested very early on that I might want to join a support group, but at the time, talking about it was the last thing I wanted to do. I wanted to pretend it wasn’t happening and at that point, I had still believed that I would be “back to normal” once my ileostomy had gone!
Do you think help for IBD patients has improved over the time that you’ve lived with it?
Care for IBD patients is still very one dimensional, when the reality is, a more holistic approach is often needed. You see a gastro who deals with the issues throughout your digestive system, but all of the extra-intestinal symptoms such as skin issues, joint problems and psychological impacts aren’t covered, and being referred to a specialist in those areas can take an awful long time and requires a lot of “pestering”.
It is also extremely difficult to find a GP who understands Inflammatory Bowel Disease, and the impact it can have on the rest of the body. I often feel like I am having to teach them about my condition, and by the time I have done explaining the surgeries I have had and how they have affected my body, my time is almost up!
How has your physical condition impacted your mental health?
Being in pain every day for months at a time, while waiting for a treatment which actually works can be soul destroying. It’s made especially difficult because you don’t look sick. Living life in a painkiller haze just so that you can get out of bed and make it to work in a morning is not pleasant, and then there’s the joint pain and the fatigue on top of that. It’s difficult when you can’t see the light at the end of the tunnel, and you feel like you have no quality of life. It can feel like you’re constantly waiting; waiting for appointments, waiting for tests, waiting for results, waiting to see if a treatment works, and that’s tough to do for months and sometimes years at a time.
I spent almost two years feeling like someone had just pressed paused on my life. I went to work all week and then slept when I got home. There was no energy left to cook anything that was good for me, and most of the time, the thought of having to shower was enough to have me in tears. I didn’t go anywhere, I didn’t socialise, and I even stopped going online and talking to the people in the #IBDSuperHeroes group. I felt so negative, that every time I tried to write a post, I was just complaining, and I didn’t feel that I could be of use to anyone else when I was in such a negative place myself.
Today, how do you deal with your condition?
In all honesty, it can feel like I am juggling a lot of balls at one time. It has taken many years and a lot of trial and error, just to learn to listen to my body and understand what it needs. I try to stay as healthy as possible, which means considering what I put into my body, taking my medications correctly, trying to be physically active when I can and taking time out when I need to.
I have had seven surgeries in total, and I now have a permanent stoma. Dehydration, joint pain and fatigue are pretty much constant battles, and my iron and Vitamin D have to be monitored frequently. I know this, which puts me in the best possible position to take control of it.
How has your diet changed? Are there trigger foods that you always avoid?
Actually, since having my permanent stoma, I consider myself very lucky to be able to eat pretty much anything. I don’t tolerate things like carbonated drinks, milkshakes or whipped cream well, because of the air they have trapped in them. Other than that, I am able to eat fruit and vegetables to my heart’s content.
I extremely grateful to be in the position I am now, because in the past I have had to stick to low fibre or low residue diets. Food never triggered a flare for me, but because of strictures (narrowings in the intestine) caused by previous surgeries, anything with insoluble fibre would result in me being in agony. Occasionally, I would treat myself to something that I knew would cause me pain, but it would always be a weekend when I knew I would be at home, with painkillers, and near the toilet.
How has your condition changed your life?
I was on a pretty slippery slope before diagnosis. I drank too much, smoked a lot, and never gave my body or the repercussions my lifestyle might have on it a second thought. I have been close to death, more than once, and that put life into perspective. It helped me figure out what and who really mattered, and made me re-evaluate how I wanted to live my life.
Stress was the only thing I identified as a trigger, so making a conscious effort to avoid stress and negativity, and to cut out the type of people that bring that into my life has helped so much!
It has also had a massive impact on my career. I worked in a factory when I was diagnosed. I didn’t really like it, but it funded my recreational activities, and I couldn’t be bothered to look for anything else. When I re-evaluated, I realised that work takes up a such a huge proportion of your life, so it should be something you enjoy! I did an apprenticeship in marketing and worked my way up. I chose social media as a specialism and that also helped me with my awareness raising in my spare time. I started blogging as part of my awareness raising mission, and that has led to where I am now. I am a freelance writer, blogger and social media moderator, and all of my roles are within the IBD and ostomy space – I get paid to do what I love! How cool is that?!
What’s the one thing you wish people knew about living with a chronic illness like UC?
IBD is a long term, chronic illness. You can feel well one day, experience symptoms the next, and then be hospitalised the day after that – maybe even having emergency surgery. It really can progress that quickly!
Even when you’re in remission, making plans can be scary, because symptoms like fatigue are not something you can plan for, plus, it’s not uncommon to live with the constant fear that you might flare any day and be unable to do the things you’ve planned to do.
What are the main misconceptions you’ve noticed people have when they ask or talk about your condition?
I think the term Inflammatory Bowel Disease makes people think that the only issues are toilet-related. The reality is that so many other organs can be affected by the disease itself and by the medications used to treat it – from skin, teeth, hair and nails, to bones, joints and even mental health! Chronic fatigue is a very common symptom too, and most of the issues we face are invisible.
Most people assume that you take a medication and then you are back to normal, but IBD is notoriously difficult to treat, so finding the treatment that works for each person can take a long time. Even then, the treatments can have huge side effects too. People with IBD are often more likely to become seriously ill from common viruses and infections that a normal, healthy person’s body would fight off after a couple of days. This is because the treatments for IBD usually involve suppressing the immune system.
What advice do you have for newly diagnosed IBD patients – particularly young people and teens?
It’s true what they say – knowledge IS power. Learning about your condition, and more specifically, how your condition affects you, personally, will help no end! Learning what triggers you have can help you feel more in control, which is so useful as IBD is one of those diseases that can leave you feeling powerless. Communicating with your healthcare team and feeling involved in decisions can help alleviate some of those feeling of having no control.
Preparation is key!
Yes, there will be times that IBD stops you doing certain things, but there are lots of things you can do if you think ahead and have a plan. Simple things like taking a change of clothes, familiarising yourself with the nearest WC and having a RADAR key can help ease the anxiety about leaving the house.
It took me a long time to be comfortable talking about IBD, my stoma and my surgeries. I am very open about it now, with anyone who is interested enough to ask questions, but, initially, I was much more comfortable opening up to other people with IBD. They got it, without me needing to explain everything! Whether it’s people you already have in your life, others with IBD in support groups on and offline, or a Mental Health professional, talking through how you feel helps!
Find your tribe
Many people with IBD say they have lost relationships due to IBD, but for me, I saw it as separating the wheat from the chaff! I didn’t need people in my life who only wanted me as a drinking buddy, or who didn’t actually care about me or my health. I am left with a few, very good friends.
Redefine your ‘norm’
Finally, having IBD doesn’t mean that your life is ruined. Many people also find that their education or career plans get messed up, but you can always adapt and make new plans. You may be able to go where you always planned to go, or you might find yourself going in an entirely different direction – the destination can be just as good, if not better!
Follow Sahara’s #IBDHeroes blog here.