What my friends were too scared to ask about my Colitis

06 November 2019

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I told my friends to ask me anything about living with Ulcerative Colitis. Here's my journey to talking and what my friends wanted to know... 

My journey to transparency

My name is Sarah and I’m 25 years old. I work for Crohn’s & Colitis UK and for those who don’t know I am living with Ulcerative Colitis. I was diagnosed in my final year of university at the age of 20 and only up until about a year ago I used to hide away from the fact that I had Colitis. 

Two years ago, I was 18 months into remission when a bout of the flu caused my immune system to become weak, which threw me into an ongoing constant fluctuation of flare symptoms, medication changes and also mental health issues. 

It wasn’t until May 2018 when the company that I previously worked for, moved office location that I became more transparent about condition as my 5 minute journey turned into a 20 minute journey, stress levels surrounding travel increased and I needed to make my HR department aware.

It was these factors that made me realise that being completely transparent about my condition was so important in the education of those that don’t know and also raising awareness of Crohn’s and Colitis.

I belong to a theatre group; a group of lovely friends that I see often and rehearse and perform with regularly. They know I have the condition and have seen me suffering with flares but it dawned on me that maybe they have questions that they want to ask but don’t feel comfortable doing so in person or don’t want to put me in a situation where I don’t feel comfortable revealing all.

I asked them the question: Do you have any questions surrounding my Colitis that you would like to ask? These are some of their questions and my answers...

How do you manage it when you have to perform on stage for a week? Do you have to change your routine?

So I find that my condition is significantly more active within the first few hours after I have eaten due to what is called the gastro-colic reaction, this is where your digestive system kicks in so that it can make room for more food.

During a show week I have to adapt my routine in terms of eating patterns so I will usually have a big breakfast about 10/11am and then will have to eat again around 3pm. This allows my bowels to do their thing.

I also have to manage my symptoms with strong painkillers so that I don’t get the urgency to rush to the bathroom or the pain that can have me doubled over cos let’s face it, that’s not ideal when you are on stage!

What about how it suddenly comes on? (Remembering being in the wings, back stage, and all of a sudden you’d rushed off.)

As mentioned above, I do get sudden urgency, this can literally leave me a matter of seconds/minutes to get to a bathroom otherwise it could have certain consequences such as accidents. This urgency can happen in the middle of night, when I’m in the supermarket or in the car – it's so unpredictable that sometimes you don’t have the confidence to not be near a bathroom.

If I want to plan an activity with you like a day or night out – what can I do to make it easier for you?

I have to plan ahead, so the more details I know in advance the better I can plan for journeys and bathroom stops. Also just be flexible and understanding with me, one day I can feel fine, but then others I can be bed bound and need to sleep, so if I need to cancel it’s not personal.

Try to understand also that although I maybe smiling, underneath I am asking myself where is the nearest toilet, is there somewhere I can ‘escape’ in case I don’t feel well or is what I’m drinking or eating going to affect me? 

How many times in a day do you think about it/your condition?

When I am having a flare or flare symptoms, I’d say probably 2 -3 times a day, it is always in the back of my mind. 

How can your friends support you better?

Just listen and also be mindful that when I say I’m fine or okay, I’m probably not but just want to get on with things.

My condition is a part of me so being honest with people about it helps those understand what I’m going through. It can also make people think twice before making a judgement of any kind, it is easy to make a knee jerk reaction, we all do it, but talking about it and educating others can help people stop and think a little.

Living with Colitis

Do you have to be really strict about your diet and if you’re not does it make a huge difference to your symptoms?

Everyone’s diet is different, even in people who don’t have Crohn's or Colitis. But because my bowel is inflamed, I have to be mindful of how much gluten I eat, follow a low residue diet and stay away from cooked dairy (butter, yoghurt, milk, cream). There are a few things I stay clear of, which, if I eat them I can most likely suffer with pain and an increase in my symptoms, but these side effects do die down about 48 hours(ish).

How difficult is it to plan things in advance? For example buying tickets to see shows.

It’s not difficult per se but it sometimes can be an inconvenience to those I’m with. Or at least I feel it’s an inconvenience. So, let’s take going to see a West End show for example, I will always make sure that if I am buying the tickets that I can be at the end of an aisle and will always opt to get the ticket protection (I never make the other people I’m going with pay for that protection) in case I fall ill or am admitted to hospital.

I will always go from a train station that has a bathroom as well as make sure I am on a train carriage with a toilet. When I get into Euston I will go to the toilets before getting on the tube. As soon as I’m out of the tube I find a bathroom… I feel like you understand the jist, toilets are on my mind A LOT.

How do you plan your journeys if you have to use public transport?

Unless there is a bathroom on them, I avoid them. I find buses and tubes very nerve wracking! I would rather get on a train for two hours than have to drive anywhere for more than hour.

What actually is it? (Except from painful.)

SCIENCE TIME! My immune system basically has a glitch so it sees healthy tissue as being harmful so sends a message to my body to attack it. With my Colitis the healthy tissue it's attacking is the top lining of my large bowel, which causes it to be inflamed and ulcers to form. This means that I can’t absorb nutrients or water properly, that bowel movements can cause pain and are usually very loose with the need to get to a bathroom can be seconds to minutes.

With all this going on, it can affect my iron levels, cause me to be extremely fatigued, my joints to ache, my nails and hair health to be affected and also quite quick and extreme weight loss. If you do want to know more visit the Crohn’s & Colitis UK publications pages – It is super informative about all aspects of the conditions!

I know when you’re poorly as you have your microwave cushion but how are you feeling about what you are going through?

At the moment, I take every day as it comes - if I think too far ahead I start to feel sad and worried. Living in the moment and in the day, I can tackle how I’m feeling physically and also listen to what my body wants.

Do you have to take nutritional supplements to make sure you get enough vitamins or minerals?

Due to the fact that the inflammation stops the absorption of nutrients and also the diet I have to follow I try to get added nutrients where I can, so I (try to) take multivitamins and all the steroids I’ve been on are affecting my bone health so I take calcium supplements too. However, upon recent blood test results I have low folate levels so am now on a six week course of folic acid!

Do you have any Christmas meal ideas if you have a family member or friend who has Crohn's or Colitis?

My main suggestion on this is to ask if there is anything they can’t or would rather not have. It will make them feel cared for and valued. I know that I’m super flexible but if I can’t have something or I don’t want to risk it then I will say that I will make/bring something else instead. The key thing is communication because everyone’s Crihn;s or Colitis affects them in different ways!

It takes guts to talk about Crohn's and Colitis. Nobody can see it, until we say it.

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