Natalie-Amber’s Story: Crohn’s Diagnosis & Learning to Love Yourself

Natalie-Amber’s Story: Crohn’s Diagnosis & Learning to Love Yourself

Hey Beautiful Pelican Lovers. My name is Natalie-Amber, and I am a 27-year-old Model and Performer from Swindon in Wiltshire, England. You know that girl jumping on the National Lottery’s Set for Life campaign? YES, that’s me, and I had a stoma bag whilst jumping for joy. I will be giving you some monthly blogs on all things stoma, reversal, and body confidence and self-love. I CANNOT WAIT!

I just want to let you all know I am always going to be brutally honest about what I have been through and how I felt. I know some people are scared of doing things like that but we all have probably all felt the same type of way at least a couple of times on our journey with stomas for whatever the reason may be. So, let’s start at the very beginning.

I was misdiagnosed for 7 years, due to being a model and dancer attending Wilkes Academy school of performing arts doctors would always blame my weight loss and sickness due to anorexia or IBS. I know, stereotype or what? (emoji with the eye roll). My mother and I were constantly in a battle with doctors trying to convince them something was wrong, and it was not any of these things they were saying. I begged for a Crohn’s test on a number of occasions and they just kept saying, “you do not have Crohn’s.” Boy were they wrong.

Saturday 3rd December 2017. I used to be a ring card girl, so I had a boxing event that night and I was so self-conscious about my weight and the way I looked, size 4s became too big for me. I attended the event and was sent home after being sick all over the floor. I remained bed bound from then on.

Tuesday 5th December 2017. Mum got up for work and I was naked led on the sofa with the fan on and in pure agony; she insisted we get my Nan down as I did not look well and she did not want me to be left alone, I was refusing, saying, “no I would be fine” but she was adamant Nan was coming down and rang her. To this day I feel sick thinking about how one small thing could have made a big difference. If my Nan had not come down that day sadly, I would have been found dead on the bathroom floor. I collapsed three times, one downstairs, again upstairs and the third time that was NOT lucky, on the bathroom floor where I did not get back up. I remember thinking to myself on the floor I am fine, why can’t I get back up? It made no sense to me, mentally I felt fine. I went blind for around 20 minutes and I did not have time to panic, it wasn’t processing in my head much. My now ex was there at the time, as Nan rang him to say he would probably need to take me up to A&E, unfortunately it was an Ambulance who took me instead. My ex had to talk to me as I was on the floor and try calm me down as the paramedics were struggling to slow down my heart rate. I remember my vision coming back as I was being wheeled into the ambulance.

I cannot STRESS enough how amazing the Ambulance team were. I got to hospital and to me it seemed like 10 minutes, but this was due to me falling in and out of sleep. I remember the nurse coming up to me asking me to sign a form for an emergency operation. I had NEVER had an operation before; in fact, it was one of my biggest fears. I refused of course into which she shouted in my face “If you don’t sign this you will die.” Well that made me panic even more didn’t it? After everybody, Aunty and Mum shouting in fear for me to sign it, I managed to do a straight line with the pen, because I was so weak, I couldn’t write, so they accepted the line. I remember crying to the nurse “please, I don’t want to die,” to which she kept saying she wouldn’t let that happen. To this day even writing this blog right now, tears come to my eyes when talking about it.

I had two operations in two days. Mum and dad were told by doctors that they don’t think they would be able to bring me back. I was clamped together over night after the first operation as I was too small to be sewn. The next day I had another big operation, as my surgeon wanted to make sure everything was removed.  He told my parents I had Crohn’s disease into which they were livid, because we had thought this all along. Where it had been left so long, caused me to have kidney failure and Sepsis. I had 35cm of my small intestine removed, a small part of my large bowel and my appendix. My surgeon said I am only here today due to my fitness. However, I also believe my Granddads were there in spirit and helped me pull through. I was in intensive care for a week before being moved to a surgical ward.

I did not know I had a stoma bag until I was more awake and aware of my surroundings. I did not even know the operation had been so big, or serious. I remember my consultant coming in and telling me that I could have the bag removed in 6-12 months. I was so confused. Then it hit me, I saw the bag and my whole world crumbled. I was so scared to look at the bag, and I finally did, would you believe I looked at my stoma and changed it before I could ever face my scar?  So, the stoma nurses were amazing and the one I had the most told me to name my stoma because it helps you get to love her. I looked down at this pink thing on my belly that looked so strange and was like IT is not having a name. Mum and my cousin Jessica were coming up with all sorts of pretty names, and I was like NO. IT does not deserve a name, it’s weird.  Guess what, I soon grew to love her, and her name funnily enough became ‘IT’. So now when I refer to my stoma I shall say ‘It’ as that was my little troublemakers name. I say troublemaker because she kept me up most nights leaking and getting too excited after certain food. Really Queen? I felt the less love I gave her she got me by leaking, honestly, when I become friends with her bad behaviour stopped.

So, when I had found out I had the bag and it sank in, I cried most nights. I hated the way my body looked. Dancing for me was over. I had this ugly thing hanging out my stomach. I hated that the stoma bags were clear at the time because they needed to see my output. I remember Brian Friedman messaging me on Instagram saying it would be okay, sometimes things happen, and dancers have time out of training due to injury but to keep focused and listen to my body and to keep believing. I will tell you a funny story about the night I got his message; I woke up needing a wee, at the time I needed constant help to the toilet, so I pressed the buzzer in hospital as I was waiting I looked on my phone saw the Instagram message and was so happy that I wet myself. I really did not care either and stayed smiling like “oh my Brian really messaged me.”

I hid from social media and some friends that I had a bag for a long time. I just didn’t feel confident enough, I didn’t want people to laugh at me. I was ashamed and embarrassed. People were not going to think I was pretty anymore. Despite having a boyfriend at the time who was good to me to start with, I still felt ugly. My insecurities got worst when my boyfriend suddenly changed his personality very quickly and started to make nasty remarks “nothing worse than having a shit bag”, “If you move on don’t shit on anyone”, “dirt bag dirt bag dirt bag, go cry about that”. Then he did the ultimate dirty and cheated. Honest to god I was so hurt, how could my so-called best friend of two years who I did so much for be so mean and cold towards the person he saw collapse and be rushed into hospital. How when I am home crying in bed about the way my body has now changed and needed somebody to tell me it would be okay, could he be out there doing what he was doing?  You hurt somebody who you nearly lost forever on the day I went down for surgery and you are out there doing this. It was mental abuse, because other times he would be so good to me and help me change ‘It’ and make sure I was okay. Mentally this was damaging.  This has left me on top of the trauma of going through all of this with severe depression and I have been diagnosed with PTSD. I had such low self-esteem, who would want me looking how I do, with a stoma bag and a scar, nobody. Honestly It really damaged me more mentally and had a big effect on how I was with people after. Very closed, not giving my all.  I felt like I needed to protect myself of ever being this hurt again, and besides the right one would want to break those walls and be respectful.

I would leak in public. I leaked on the day of the National Lottery shoot but managed to keep calm and change the bag to a new one. I leaked again in London and forgot my stoma stuff so my skin had blistered where I had to travel back on the busy train holding the bag to my stomach and wanting to cry in case others could smell it. I really did not care at this time in my life if I lived or died. It was some of the darkest, loneliest times of my life.

Then one day it hit me, AUGUST 2018! I bought a book by a beautiful woman who goes by the name @theslumflower on Instagram. This was a book on how to respect yourself, what to tolerate and what not to. I really took a change then; me and my ex of two years had broken up, I knew my worth and knew the right man would love me for me, but not only that but that I DON’T need no man. How am I going to have somebody love me if I don’t love myself? I took the plunge, I recorded a YouTube video and posted it to Facebook at 6pm I told the world I had a bag, and I am not ashamed, why should I be? ‘QUEEN IT’ She saved my life. I love her so much, and I love my scar. I posted a photo also, and I was grateful. The day I did that I felt so much weight off my shoulders, I was so happy I finally did it.  Nobody commented and told me I was ugly, or what was that. In fact, it helped many others come out about their insecurities and body issues.

‘Queen It’ saved me. I love her and her little tiny red self, she was so petite and yes, she gave me grief at times, but I loved her dearly. It wasn’t till halfway through the year I read the diary my cousin had wrote for me during my stay in intensive care for the time missed. I learnt about the 35cm of my small bowel being taken out, and I broke down. I felt sick, my trauma councilor who the hospital had referred me to then told me that it was because I was basically grieving the death of something that was part of me. I just want to say to you all, it’s okay to feel, sad. It’s okay to feel down, it’s okay to cry. I wish the techniques and self-help I will be sharing with you over my posts I knew then. WE are all beautiful, we are all unique, and should all be grateful for being alive today.  I love ‘Queen It’ I cried to see her go in the end we became such besties. I am so proud of the person I am becoming, going through a major change in life can really change a person. This changed me for the better, I love the woman I am becoming today, and I will never be the person I once was again.



You can find Natalie-Amber’s Instagram here