Voices of IBD (8) - Nevada's Story

Welcome to PART 8 of the Inflammatory Bowel Disease series, where we talk to people from all walks of life with this condition; to give everyone a platform to share their story, and help to raise awareness.




This week we talk to Nevada about her battle with Ulcerative Colitis.



What is your name and age?

Nevada-Dawn Gale , 24.

What is your occupation?

I have been a nanny since 2015. I care/look after children in their homes

What form of IBD have you got?

I was diagnosed with Ulcerative Colitis ten years ago. I am soon to have an MRI to reevaluate as I have had flare up's every summer. 


How old were you when you were diagnosed?


I was 13, almost 14

About the disease...
What were your main symptoms that led to your diagnosis?

I would say my symptoms appeared gradually and looking back it was actually obvious what it was leading to, now knowing the symptoms of IBD. The first symptoms were weight loss, extreme tiredness (I would just fall asleep straight after coming home from school), not that interested in food, a patch of my hair fell out at the front, I had irritated, sore eyes, I could barely open them (which the doctors thought may have just been hayfever as it was around summer) and the final, most alerting symptom was blood in my stool. 


How did you feel when you got diagnosed?

I honestly remember not feeling much about it. I didn't feel scared or worried, the doctors didn't make it seem that dramatic or serious. I have always been quite an accepting person so in all honesty I just accepted it and started medication not long after.


What support did you get during and after your diagnosis?

My Colitis once diagnosed wasn't actually that serious, it was considered active but mild. I can't remember getting much, intense support but I knew the doctors or IBD nurses were always around if needed.


Do you take medication , if so, what?


Once I was diagnosed I was put on Asacol, which didn't work so I had my first dose of steroids at 14 which worked really well. From then on, for the next 9 years, I was up and down different doses of Asacol but last year the doctors wanted to change my medication as I started flaring more often and they thought the Asacol alone may have stopped working. I was put on Mezavant 1200mg and Azathioprine 50mg last year and together they have worked greatly! My toilet trips have dropped, I still have moments of fatigue but I generally feel better since starting them.

What are your experiences with hospitals? Have you had many stays in hospital, or colonoscopies? Do you have an IBD nurse?

I can only think of two occasions during hospital stays that haven't been positive or I felt I wasn't treated effectively. Every other stay has actually been really good and I have always been treated with dignity, respect and an understanding. Over the years I have also gotten to know my IBD a lot better and I know what I need when flaring, doctors and nurses have been amazing at listening and respecting that I know my body best! In a period of ten years, I have had six stays (sometimes I have stayed twice within a few months of each other) but it is always around summer. In 2014 I had two stays, 2015 one stay, 2016 two days and 2017 one stay at the end of September. This is why they are keen to do an MRI on my small bowel, just to check they aren't missing anything. They think I may have Crohns as well as Colitis due to having stays each year. I have mentioned that it is always in summer, I am really really good the rest of the year but once the end of May/June comes, it seems to get worse. They have no answer for that though. From being diagnosed, I have had two endoscopy's and three or four colonoscopies (can't remember the exact number)   all of my colonoscopies have always shown mild irritation, redness and some puss when flaring but nothing ever looks as bad as I seem to feel! 

What seems to affect your IBD the most? What triggers it?


Stress. I feel my diet plays a small part in, there are things I purposely leave out because I know they don't make me feel good and they aren't worth it (like alcohol) but for the most part I feel it is stress that brings on a flare. Mentally I feel I almost have quite a solider way of thinking, just get on with it! I'll be fine! But then it all comes out physically and goes to my weak area, which is my IBD.   

Do you currently, or have in the past, struggled with mental health? If so, what?
I have always had anxious tendencies. Growing up I did a lot of skin picking. I picked my skin, mainly my thumb, I'd pick and bite my lips, often to the point of bleeding. I still do occasionally, I have periods of no picking at all and periods of intense picking. I've never picked at my eyelashes but I've noticed I sometimes pull them a tiny bit when I rub them. I have also had an on and off stammer. Which I think is more of a neurological thing but for me I definitely find situations that make me anxious, also make my stammer more obvious. I've always said I have a phone stammer, I find it difficult to answer a telephone without stammering when first answering but I can talk to a person face to face really well and no-one ever notices! Earlier this year I went to my doctor because I felt certain situations were making me really anxious and it was affecting my ablity to get on with things. I am also prone to low moods. More-so intertwined with when I am due on my period. I can sometimes feel like a completely different person the two weeks before my period. My doctor diagnosed me with situational anxiety and mild depression. I feel I am better at getting on top of the anxiety more than I am with low moods. My anxiety presents itself through irrational thoughts and I am aware they are irrational, I am more able to get out there and put myself in the situation that makes me feel anxious and feel fine. The low moods, although they only last for about two days, I find harder to get on top of. I was also put on the contraceptive pill which has helped with my moods.
Was this because of you IBD, or influenced by your IBD or vice versa?
Depression/anxiety run in my family so I am predispositioned to be affected in some way. Like I said above there has always been a subtle, anxious thing about me and looking back on when I was a child I can definitely see it was present way before I was diagnosed with Colitis. When I am flaring though, my anxiety does go up. If I start going to the toilet more or the urgency kicks in then I am more worried about going out and would prefer to stay at home. From flaring every summer since 2014 I do always feel more worried when summer is approaching. I became unwell at the end of September this year but it was the opposite of what usually happens. I wasn't going to the toilet and I was in a lot of pain. When I first went in to hospital they thought it was a stomach bug, I had started being sick when in hospital but I was discharged that weekend but nothing got better and I had never had pain like that. I'm good with pain. I don't want to cause a fuss, I am able to push through a lot of things. But this pain was not something I have had before. I had never been so emotional when feeling unwell, I literally felt like I mentally couldn't cope (which is also not like me) I was sitting on my bathroom floor in tears and I remember wishing I could rip the pain out. That is the only time to date I can say my IBD or just generally being unwell, has mentally affected me. I am trying to get my mind to stay aware that I have IBD but not to let the thoughts control me, it can be difficult!
I have been on steroids five times and I do think they have had a lasting effect mentally.

Do you get support for your mental health?
My doctor referred me for CBT therapy, I started on a Stress Control Course with IAPT but I was only able to attend one session, I began working and the times clashed. I am keen to begin the CBT therapy, I have it on my to-do list to call them! My doctor also did suggest antidepressants but I am not currently taking anything.
Do you feel like you get the right support?
I feel once I am able to start CBT therapy I will get the support needed. I can see it being beneficial.

How do you cope?
What is your go-to routine for when you are flaring
?
My flares don't seem to creep up on me or happen slowly. I seem to go in to a big flare straight away, within a few days.They completely wipe me out so all I am able to do is sleep, rest, try and drink water and I always end up in hospital (summer), which includes more resting and getting treatment I need.

What do you do to give yourself a break or relax?

SLEEP! ha. Generally, when I am not flaring, I am super chilled anyway so I have no problem allowing myself to laze around and have a weekend doing nothing or just going to a friends house. I do want to get more hobbies though and generally meet some new people. I am thinking about (I've always been thinking about), starting yoga and dance again, I use to dance when I was younger and I still feel amazing when I dance, it feels very freeing. I feel great when moving. When I am flaring, it really is just rest and focusing on getting better, getting my energy back. I'm a rubbish communicator when flaring, all my energy goes inward on attempting to make myself OK again.


What lifestyle/diet/changes have you made to cope with your IBD?
I don't drink alcohol, I did have a small glass of wine a few weeks ago, for the first time in a year and a week later my glands were swelled up. For me it's not worth it. I enjoy feeling good. I enjoy feeling capable of getting on with my life. My biggest devil is sugar, cutting down or completely getting rid of it from my diet is still a challenge.

What advice would you give to someone who may think they are experiencing early signs?

Do not be embarrassed. I feel this is the main reason why many people with symptoms do not go and see someone. It's embarrassing talking about poo. Blood in stools is not something we are use to seeing. It is not something you'd want to talk about. But it is so important to see a doctor. People leave it for so long until they are in a serious way and need urgent medical attention or urgent surgery. If you can catch it early, if you see someone early enough, it can be controlled faster. IBD and the symptoms are not something that should be shrugged off. Those of us living with IBD are living with a serious chronic condition and although some of us are affected in worse ways than others, it is something that needs to be seen to and treated.

What advice would you give to the friends and family of those with IBD?
No-one with IBD has asked for it. None of us would choose to live with this. If we could choose a healthy life with no medication, no hospital stays, no regular blood-tests, believe me, we REALLY would. Sometimes we can't understand why our bodies aren't working properly. Sometimes it isn't because we ate this certain thing and now we are flaring. Sometimes, our bodies decide to go in to full attack mode and we flare. By asking questions such as "well was it something you ate?" you are putting the blame on the person flaring. You are saying it is their fault their body has decided to flare. When, the reality is and can be, that those with IBD will just have periods of not being well. The best thing family members or friends can do is be present. Instead of using language that puts fault on the person with IBD, use language and words that are kind and empathetic "This isn't your fault, rest and let yourself get better". Its VERY difficult for those who do not have IBD to truly understand what it feels like. They truly will never understand but what they can do is teach themselves, educate themselves, not just on IBD in general but on the individuals experience with IBD. Get to know what IBD is like for that specific person. IBD is not the same for everyone. Communicate, ask them what they need, ask what is best for them when flaring, ask what is useful for them. Ask, ask ask. The friends/family members who know someone with IBD, also didn't ask for it, it is no-ones fault but it is something that needs to be accepted, those with IBD need to be heard and they need to be respected.

If there is one thing that keeps you motivated and focused through it all, what would that be?

That I am more than my IBD. I want to be more than my IBD. I want to live a life that I enjoy. I want to wake up and 80% of the time (because we don't always love our work!) and enjoy what is I'm doing. I've accepted that many things for me will not easy. I will never have an easy road. I want to help people, I want to give, I love working with children so I'd love to maybe teach one day or work with children in a therapeutic way. There's so much that I want to learn and try, there's so much I feel to do, that I simply can't let my IBD stop me. It will, temporarily, I've also accepted that, but there's more for me and there's more to me than having a chronic condition. I am aware that everything is temporary. I won't get this life again. If I'm being honest, sometimes knowing that everything is temporary has gotten me through some flares. The thought that this won't last forever, has actually felt positive to me. One day, you and me will be in the soil. I'd rather live this life I have now, with setbacks and obstacles and eventually - do the things I want to do, rather than not do anything at all. I feel I'm blessed with a positive mind. Don't get me wrong when I am in a low mood I don't feel positive. But for the most part, I can always see a positive. 

What is your favourite quote?


"Today you are You, that is truer than true. There is no one alive who is Youer than You." - Dr Seuss


Thank you Nevada for sharing your story here on BecxBlogs. If you are affected by Crohn's or Colitis; please go to the Crohn's & Colitis UK website for further support and information.


You can find Nevada over on her photography website at:


and on her blog: