My Story: Life with a Chronic Illness

I wanted to raise some more awareness of IBD as this week is Crohn’s and Colitis Awareness Week so as I was planning some posts to write, I began looking back through my previous blog posts about IBD and realised that I haven’t actually went into a great deal of detail about my actual story and how I came to be diagnosed with Ulcerative Colitis. Let’s flashback to 2013 where it all began… (it’s a long un’ so be prepared!)

“The sun is a daily reminder that we too can rise again from the darkness. That we too can shine our own light.”-Unknown

JANUARY/FEBRUARY 2013

I remember feeling quite stressed before New Year and began feeling unwell after the Christmas/New Year period. I started experiencing some symptoms such as severe abdominal pains, extreme tiredness, bleeding when I went to the toilet, increased bowel movements, losing weight and feeling weak/unwell in general. This went on for about a month or so and I kept seeing blood when I went to the toilet. This was extremely scary but I thought it would just go away on it’s own and didn’t really connect the other symptoms to this. I was too embarrassed to mention it to anyone, but my mum and boyfriend could tell something wasn’t right with me.

However, it took me a few weeks before I spoke out about these symptoms. I was visiting family with my boyfriend, Connor and that day I felt worse than I ever had. When we left, I told my boyfriend what had been happening and he urged me to go to the doctors. I booked an appointment for a couple of days later and I had to get tests and bloods taken. The tests weren’t the most pleasant and I felt so anxious during the whole appointment. It was decided I needed to be referred to the hospital to get a colonoscopy to check out my bowels properly as the GP could tell something wasn’t right but wanted me to have a full check up. I remember going home and looking up what a colonoscopy was. The thought of having to get a camera put inside me was really scary!

MAY 2013

I had to wait a few months for my appointment and I got my prep in the post. The prep for a colonoscopy is probably worse than the actual procedure. It’s a horrible powder that you have to mix into water and drink every couple of hours. You aren’t allowed to eat for 24 hours as the aim is to clear out your bowels so they can get a good view/reading with the camera. This was extremely difficult and I felt close to tears every time I had to make up another dose.

My mum took me to the hospital for my appointment but the doctor told her to go home and come back in a couple of hours after the procedure as she wouldn’t be able to come in with me. I got taken into the ward and got given a hospital gown to wear. I had to get sedated which made me feel so strange, I felt so out of it. The procedure wasn’t as bad as I had expected and I even watched the camera move through my insides on the screen. It was a bit uncomfortable but not too painful. Afterwards, I had some cramps and abdominal pains and felt exhausted. I then had to stay in for about an hour until I came around from the sedation. I was given a drink and a sandwich which was amazing as I was SO hungry! My mum and Connor came to pick me up and took me home. I tried to eat dinner but felt horrible so had to go to bed for the rest of the day.

When I finally got my follow up appointment after a gruelling wait, I was anxious to hear my results. When I was told I had Ulcerative Colitis and that this was incurable, I felt numb.

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JUNE 2013 

Still trying to get over the initial shock of being diagnosed with an illness I had never heard of, the next few weeks passed in a bit of a blur. I had begun taking my medication and although it helped lessen the symptoms, I was still bleeding quite a bit. I went on holiday with my friends to London which was incredible, yet difficult at the same time. I was struggling with an internal battle of wanting to join in with the exciting things my friends were doing and feeling exhausted a lot of the time. During this trip, Connor proposed and of course I said yes! This was probably the first time in months that I felt genuinely happy and positive about life.

JULY-AUGUST 2013

I was now trying to live my life as normally as I could. I was about to start college, I was working part time and Connor and I began talking about moving in together. Looking back, I can see that although these were exciting events that I was really happy about, they were also stressful and I think this took a toll on my body and my health began to deteriorate again.

SEPTEMBER-OCTOBER 2013

Connor and I moved into our wee flat together at the start of September and college began for both of us. I was doing okay for a little while but things took a turn for the worse in October. We were decorating our bedroom and so we had moved the mattress for our bed into the living room. I kept getting severe pains and felt so exhausted that I could hardly do anything but lie down. One morning, I woke up and I felt so sick. I was then sick constantly for a day or two and at first I thought it was a sickness bug, little did I know this was a bad flare up of my UC! The stomach pains I experienced were agonising and I was constantly going to the toilet. I had to take a lot of time off work and college and it got so bad that I phoned NHS 24. They arranged an appointment for me with the on-call doctor who prescribed me Imodium to settle my stomach. The label said “Do not take if you have Ulcerative Colitis” but I assumed the doctor knew what was best and so I took them.

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Later on that night, I was being really violently sick and in agonising pain. I phoned my mum and while on the phone, I passed out. Next thing I knew, I was being led down the stairs and into an ambulance. When we got to the hospital, I was given anti-sickness medication but I took a bad reaction to it and my heart went into overdrive and I couldn’t breathe properly. I don’t remember much else from that night apart from getting an x-ray on my stomach. I had to be kept in the hospital for 5 days to get injections, bloods taken, 3 blood infusions as I was severely anaemic and my red blood cell count was really low. I received another colonoscopy and had to be kept on fluids as I was very dehydrated. The only things that kept me going were visits from my family and Connor and the kind messages from my friends.

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2014-2016

I won’t go into too much detail of these years but I have had a couple of flare ups and hospital admissions within that time (but nothing as bad as the first big flare) and tried countless different medications. I have tried altering my diet a few times but that doesn’t seem to help greatly. My weight has yo-yo’d a few times due to going between flare ups and then taking steroids.

I joined the ‘GetYourBellyOut’ support group on Facebook which helped me so much and got my story published in a book written by a fellow IBD sufferer (you can check it out here). I had to leave my previous job as I was so ill and really struggled with the workload. I took a few months out to focus on my health and then at the end of 2014, I began my modern apprenticeship in childcare. I started working in a nursery full time but I’ve since had to reduce my hours at work to part-time due to my fatigue being so bad.

I got my IBD tattoo in 2015 in May as a way for me to be reminded to always have hope and strength throughout any struggles with this disease. Any time I look at my wrist, I am always reminded of how far I have come.

PRESENT DAY

Right now though, I am doing good. I still have pains almost every day and some days are worse than others but I am classed as being in “remission”. I still take medications daily but haven’t had a flare up in over 2 years. I am much more equipped to deal with my symptoms now and have been working on ways to control my stress and anxiety. I go for checkups to my GP regularly and have medication at home to help the start of a flare and catch it before it worsens. I have a yearly appointment with my Gastroenterologist. Earlier this year, Connor and I took part in the Crohn’s and Colitis UK 5K WalkIt to fund raise for IBD and it was incredible. I want to do more like this to help raise awareness.

 

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I am so grateful to Connor, my family, friends and all the people who support me and have helped me through these tough times. Thank you all so much ❤

I have written many blog posts you can check out if you want to know more about Inflammatory Bowel Disease.

“Storms don’t last forever.”

Thanks for reading ❤

Love and Light,

Rebecca xo

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8 pieces of advice for anyone suffering with Inflammatory bowel disease

 

I am Rebecca, I’m 22 years old and was diagnosed in May 2013 with Ulcerative Colitis. 

Ulcerative Colitis is a form of Inflammatory Bowel Disease. There are two main forms of Inflammatory Bowel Disease, those being Crohn’s disease and Ulcerative Colitis.

Crohns Disease can affect the digestive tract from the mouth to the rectum whereas with Ulcerative colitis, it it usually the colon that is inflamed.

Although the symptoms are very much physical, a lot of people forget (including doctors) about how this can affect your emotional and mental well-being.

With IBD, no one can see what is going on with you as it is all happening inside your body. This is what makes it so difficult for people to understand just how ill you can be as when you have IBD, mostly you don’t look ill.

There can be days where I am in so much pain and so fatigued, yet you wouldn’t know it to look at me.

No two IBD journeys are the same, so what works for one person might not for another. Life would be boring if we were all the same!

I know from speaking to people with IBD that it can be lonely and isolating, especially if you are having to go to the toilet 10 times a day.

It can be frustrating and depressing and most of the time you wish you were normal and you curse your disease.

I want you to know though, that it is not all doom and gloom. There are periods of remission, where you feel good and things get better. It is all about being grateful for those good times and appreciating what you have.

I feel that having IBD has changed me as a person, I am stronger and I try not to take things for granted. I am not perfect and still have the days (sometimes weeks) where I get angry and I hate my body, but I have this disease for life so I need to make the most of it and live every day to the fullest.

These are the 8 pieces of advice that I can offer to those living with IBD, having learned them from my own experiences:

1. There will be days when you can’t get out of bed. That’s okay. Rest as much as you can.

2. Don’t take your health for granted

3. Make the most of the good days

4. Love yourself during the bad ones

5. You are stronger than you think

6. Don’t push yourself too much

7. Don’t be afraid of speaking out about your symptoms

8. Not everyone will understand your struggle, don’t worry about them

To anyone who is suffering from any kind of digestive issue, I urge you please don’t wait to be seen by a doctor. They will be able to help and put you on the right path to recovery.

Thank you for reading and please just keep in mind that illnesses/disabilities are not always visible. Be mindful of people’s feelings and remember that everyone has their own struggles.

Love and Light,

Rebecca xo

Walking for IBD

We did it!

The Crohn’s and Colitis UK #WalkIt went so well and it was such an incredible day. The sun was shining and the spirits were high. When we first got to Edinburgh, we noticed the bright purple tent through the trees and when we arrived to the area, it was like a sea of purple! It was so amazing to see how many people were there to support and raise awareness of Inflammatory Bowel Disease. There were lots of different stalls providing food, information and support. There was also an inflatable bowel which was awesome and had information throughout all about Crohn’s disease and Ulcerative Colitis.

To start off the walk, there were amazing dancers and live music for entertainment. It was a fantastic atmosphere that got everyone excited. During the walk, it was so lovely to have people coming up and asking what we were walking for and what IBD was. It felt so good raising awareness and being able to spread the word around the city of what IBD is and why awareness is needed. We took the wrong route and ended up doing almost 6K instead of 5K (oops!)

At the end of the walk, I felt really emotional that I had done it. I’m so glad that I felt well enough and had enough energy to go through with it. It was a bit overwhelming (in a good way) that so much effort was put into the day to raise awareness of these diseases that are so often misunderstood or unknown. We met some lovely people and it was nice to hear others stories of why they were there and their experience with IBD. I was so grateful for Connor being there with me. He is my biggest supporter and I am so thankful to have this wonderful partner who cares so much (sorry for the cheese!)

 

After the walk, we went for a Nando’s date which was so delicious! And then explored the shops around Edinburgh. We spent the rest of the afternoon relaxing in the cat cafe, Maison de Moggy. It was the best way to chill after the excitement of the morning.

 

 

Overall, the day was so incredible and I am so glad that we took part in the 5K. I am so grateful to everyone who donated and sponsored us as we have raised £240 for Crohn’s and Colitis UK. Thank you so much! I am hoping to fundraise more for CCUK in the future and I will keep you all updated.

Love and Light,

Rebecca xo

Raising Awareness of IBD and What You Can Do To Help

Raising Awareness of IBDHey everyone,

I just wanted to check in and say I am so grateful for all of the donations/ sponsors so far (if you missed my last post, I am taking part in a 5K walk to raise money for Crohn’s and Colitis UK) and it makes me so emotional to think how much support I have behind me. The money raised for Crohn’s and Colitis UK could help fund research for treatment and even a cure someday. Funds can help provide information and advice for over 1,000 people with Inflammatory Bowel Disease which is just incredible.

Crohn’s and Colitis UK Website

This charity was the first place I turned to when I was diagnosed. There are so many useful resources on there such as their Crohn’s and Colitis Companion which is an interactive resource that gives users information or advice on things like their symptoms, treatment options and how to live with IBD. This is really easy to use and so helpful for people who have just newly been diagnosed or anyone who needs a little support. There are over 40 leaflets and booklets available to download covering everything from financial aid to the symptoms of both conditions. It is so important to raise funds and donate as they use the money for incredible things like determining causes of IBD and the newest treatments. Recently £700,000 has been awarded for the research into new treatments and improved care for patients.

#WALKIT

#WalkIt is happening all around the UK. There is a 5K or a 10K that you can do or volunteer at. I am so excited to take part in the walk and to meet others with IBD. I think it is so amazing that we will all come together to support this amazing charity and each other. It is important to keep raising awareness of these conditions, being invisible illnesses, they can be so damaging to someones body, but at the same time give the appearance of being ‘well’.

It is amazing that more people are becoming aware and more understanding of chronic/invisible illnesses but there is still a long way to go.

The most important thing that anyone can do is to have compassion for others. We all have something going on in our lives, you never know what people are going through. Their lives may look perfect on social media but a smile and a filter can hide a lot. Every single person has their own struggles and it is important to keep that in mind every single day.

An Update on My Ulcerative Colitis

I am doing great at the moment; I haven’t had a flare in around 2 years. However that doesn’t mean that I feel healthy and fab every single day. There are still good days and bad days but my bad days are better now than the ones I used to have. The symptoms I’ve been having recently are some stomach cramps/pains (these tend not to come to anything and usually decrease) and fatigue. Fatigue is what I struggle with the most and it can be there even on the good days. I usually help this by resting as much as I can and trying to reduce my stress, although I fight a losing battle most of the time.

It can be hard some days to not let it get me down but I just have to pick myself up and keep moving forward. This is my life now and my UC isn’t going to stop me from living it to the fullest.

How You Can Help

You can help raise awareness of IBD by joining in the #WalkIt, donating or even just sharing this blog post. If you or your loved one has IBD, becoming more comfortable with the symptoms makes it easier to talk to others about them and thus raise awareness. The more we talk, the more recognised and accepted these conditons will become. I waited longer than I should have to get medical help as I was too embarrassed to tell my family. It is okay to talk about your bowel habits, every one has them! It’s normal and we need to get over the taboo of talking about poo.

Thanks for reading ❤

Love and Light,

Rebecca xxx

Colitis and Me

 

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As part of #CrohnsandColitisAwarenessWeek, crohnsandcolitis.org.uk has set up an option to create your own poster to spread awareness of the differences of IBD from person to person. This is my poster on how living with Ulcerative Colitis affects me and my life.

 

10 Things You Need to Know About Ulcerative Colitis

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1. Ulcerative Colitis (UC) is a form of Inflammatory Bowel Disease (IBD). The other main form of IBD is Crohn’s Disease. IBD is an autoimmune disease which means that the immune system attacks the healthy body cells.

2. Around 146, 000 people in the UK are living with Ulcerative Colitis.

3. UC causes inflammation and ulceration of the colon and inner lining of the rectum.

4. Symptoms can vary from person to person and can include; blood in stools, diarrhoea, severe abdominal pain, extreme fatigue, anaemia and severe weight loss in some cases.

5. There is no known cure.

6. Treatments for UC include immuno-suppressant medication or anti-inflammatory medication which aim to reduce the inflammation. There are many different kinds of medication for IBD such as steroids, injections etc and sometimes they do not always work, resulting in surgery. Surgery for UC includes the inflamed part of the colon being removed and an ostomy being created. This is when an opening in the abdomen is created to allow the intestines to go through and a bag is attached in order for the person to pass waste into. The surgery is usually only required for those with severe cases of UC.

7.  The cause of Ulcerative Colitis is unknown but researches believe it could be caused by a person’s genes, environment and the immune system reacting in an abnormal way to bacteria in the gut.

8. IBD is not the same as IBS. IBD is a disease and has no cure. It is a life-long illness whereas IBS is a syndrome and can be treated/controlled with medication or changes to the diet.

9. It is not just a pooping disease. There are many symptoms of IBD and not only that, there are many problems caused by having IBD such as joint problems, side effects from medication, mental health issues and much more.

10. People with UC/IBD often don’t look sick. This is because it is an invisible illness. This means that the person could look absolutely fine but be really struggling on the inside with severe symptoms and you wouldn’t be able to tell by looking at them. This is why it is so important that awareness is raised.

To help support research for a cure for IBD, please text CCAW22 £_ to 70070 and share this post.

This is a subject very close to my heart as you will know if you know me or follow my blog. I was diagnosed with UC 3 years ago and it completely changed my life. I want to be able to raise awareness as it something that I had never heard of until I was diagnosed and I hope that anyone struggling with symptoms has a loved one with IBD or has been newly diagnosed can find this piece helpful.

https://www.crohnsandcolitis.org.uk/

http://s3-eu-west-1.amazonaws.com/files.crohnsandcolitis.org.uk/Publications/ulcerative-colitis.pdf

Thank you for reading ❤

Rebecca xo