All it takes is one trigger for your world to come crashing down.

I stepped out of my mums car and I could feel the pain in my ankles and knees immediately. I only had to cross a road to get to the doors of A&E, but it felt like crossing a mountain. The pain was intense, everywhere. It was such a strong feeling of pain throughout my whole body that I was glad my mum had given me a sick bag. Of course A&E was packed. So many people left the waiting area feel stuffy and smelling of sweat. Not a good combo if you are already feeling sick to your stomach. I sat with my head against my mums shoulder, praying that I would be seen by a doctor soon. The whole time I tried not to look at her face because I knew she was trying hard to keep herself together for my sake. I didn’t want her to see how scared I was, I wanted her to tell everyone how brave I had been even if I knew it was far from the truth. Eventually my bloods were taken and after an hour or so of sitting in the waiting area again, I was brought to Majors and I was given a bed to lie on. It felt amazing to lie down, to relax the pains in all my joints. But my joy was short-lived when another severe cramp hit. I just wanted to know what was going on with my body, why was I so ill? Why did I have to suffer like this, why me? Doctors and nurses approached, poked and prodded at me but all I remember now is a sea of blurred faces. I can vaguely remember having a cannula inserted but the vision comes and goes. To be honest, I remember little about that night, so much was going on around me. I do remember a doctor feeling like I would be better off with emergency surgery as they seemed to know almost straightaway from my symptoms and history that it was bowel-related. I remember my mum not being too happy with this as she felt I should be given the chance to try infusions etc. My bloods were terrible, and the more I heard doctors and nurses talk about how bad they were, the more frightened I became. I have to commend the doctors and nurses that night as they were so professional and caring, but my guardian angel of a mother was my lifeline. She calmed me when I was frightened, and wiped the tears when I cried. Never in my life had I realised how much I needed my mum until that night. Eventually I was sent to a ward and given morphine so I would be able to finally get a good nights sleep.

Within a few days, I was sent for a flex-scope to see into my bowels and then I was able to get more details on what my body was going through. They said my large bowel was very ulcerated, I was malnourished, I had malnutrition and the pain in my joints was due to inflammation. All in all, they diagnosed me with IBD – Inflammatory Bowel Disease. At this point, they were veering more towards an Ulcerative Colitis diagnosis but they could not fully rule out Crohns disease. I was seen by an IBD nurse and a dietician, both who were extremely helpful. The dietician started me on around 5 Fortijuice drinks a day. These are very high calorie drinks to help you gain weight, as I was under 8 stone and very weak. I was told I would have to have an NG tube inserted because I was so weak and malnourished, and after mum explained to me what it was I was petrified. My mum held my head still so I wouldn’t throw my head back and a nurse inserted a tube up my nose and down the back of my throat into my stomach. It wasn’t really painful but it was quite traumatising, the feeling of it travelling down. Because it has a small metal rod inside the flexible tube to ensure it goes down easier, it was very painful against the top of my nose and down my throat as it was very stiff with the metal inside. A few hours later I was taken down to have an x-ray so they could be sure that the tube was in my stomach and then the metal was pulled out, leaving just the flexible tubing in which was more comfortable. I then had my feed administered, which is a liquid feed with all your vitamins and nourishments in it. I did not eat proper food with this which was a relief because I hadn’t been able to eat proper food in quite a while. The IBD nurse explained to me what IBD was, and the treatments used. Because I struggled to wean off steroids, they decided that they would try an infusion called Infliximab. I didn’t have high hopes as I wondered how I would absorb it if I had malabsorption. Sure enough, the Infliximab was ineffective. This was when I met my new Consultant. I am not going to name him in this blog as I want to protect peoples identities, but what I can say is he is such an intelligent man and a fantastic surgeon. From the moment I met him, my gut instinct was to trust him. He explained to me that I was not responding to other treatments as my body was in such a bad way, and that the next and only option left would be surgery. A subtotal Colectomy with an end ileostomy. I was so confused, I didn’t even know what that meant, and I had never entertained the idea that I could possibly need surgery. He told me it was quite a big surgery and that he would remove the majority of my colon, but leave me my sigmoid colon and my rectum. Unfortunately that would mean I would have a stoma bag. I had to ask for my own peace of mind what would happen if I refused the surgery, and I was told that because I had malnutrition and malabsorption I should then expect the worst. I knew what he meant by that and reluctantly agreed to have the surgery a few days later.

On the morning of my surgery I was a bag of nerves. I had never had a huge surgery like this before. Yeah I have had a few small procedures in Day Surgery but never anything like this. I was torn between sadness at having to get used to life with a stoma bag, but excitement at the prospect of feeling well and being able to eat again. I hadn’t eaten a proper meal in at least 6 weeks and I couldn’t remember what enjoying food felt like. Anytime I had eaten in the last year or so I had to endure cramps and pains. The stoma nurse had marked my stomach with an ‘x’ where my stoma would be and I couldn’t stop looking at it wondering what it would look like with a bag attached. The only positive thing was that it would at least cover my horrible tattoo mistake from 7 years before! I was wheeled to theatre and my mum was beside me the whole way, and of course I was more calm and relaxed than her. I was thinking she needed anaesthetic more than I did! She reluctantly left me when all my details were double checked, and I was wheeled into the sterile white room where I would lose a part of me. There was no messing around, the anaesthetic was inserted into my cannula and I prepared myself to drift off to sleep, knowing that when I woke up my life wouldn’t be the same. I had to blink back tears at this because it is a horrible feeling knowing that a part of your body is being removed and you are never going to get it back. I didn’t have to think about this for long as the drugs took effect and everything went black.

Thank you for reading this, as it was quite difficult for me to dredge up some of these memories that I’ve tried so hard to repress for the last year! I hope you have found this interesting and will be back for part 2.

Mel x

From a flicker, to a flame.

Its hard to understand how something that can change your life so drastically can start with something relatively normal. I think that’s one of the scariest aspects of IBD, it just kind of creeps up on you. And unlike that extremely weird person who creeps up to you at the bar, you can’t tell IBD to get lost. Suck, doesn’t it? I can’t seem to remember an exact day, week or month when I finally realised that I was extremely sick.

It all started with an itch in my bum, and it slowly intensified to the stage where I struggled to get to sleep at night. Talk about annoying! And it’s not really somewhere that you like to scratch. I did go to the doctor a few times and I tried every cream or ointment that he gave me but it just never seemed to go away. Then the bleeding started, and the constant trips to the bathroom sometimes up to 8 times a day. Some might think that I would have been in a panic but I’m quite a calm person, and I guess I’m one of these people who put a lot of trust in the health professionals. So, off to the doctor I went. He ruled out piles and that was the moment I was referred to a Colorectal consultant. I believe there are two kinds of people in the world: those who overreact and those who underreact. Is there really an in-between? I’m one of those who underreact. I continued to believe it would be something silly and I was worrying for nothing. After a few trips to the consultant and a very uncomfortable scope put into my rectum, I was diagnosed with Proctitis (an inflammation of the lining of the rectum). So here my journey began! I started off with enemas which I was absolutely terrible at inserting. Like seriously, trying to hold in the liquid for at least 15 minutes when you spend your day running to the toilet was nearly impossible. I also took oral tablets which were a god-send compared to shoving a nozzle up your backside! I really believed all of this was going to help but luck wasn’t on my side and my symptoms got worse.

As if the constant running to the toilet wasn’t horrible enough, then came the cramps. Of course these intensified over time, but I’m not talking about cramps that you heal  with two paracetamol, a hot cup of tea and a warm hot water bottle. I’m talking cramps so vicious they bring you to your knees, you struggle to walk and you feel dizzy as if you can feel the energy draining from you. The worst was the cramps that got so severe they made you vomit with the pain. This wasn’t just a few days a week, this was every. single. day. I know my fellow sufferers can completely relate to this, and even when I’m typing this I can see myself sitting on the toilet with tears running down my cheeks, clutching and rubbing my tummy thinking I would rather just faint for some relief. Whilst all of this was going on, I was still adamant that I wanted to work so I got myself a job in a café/restaurant in the town I live in and started a job as a waitress. Well, I can honestly say that I have had better ideas in my life! I started off quite well but as the months passed my health deteriorated and I struggled to do my job. I was confused during the day and would have to run to the toilet often. I knew my employer was starting to get irate with this, but because I had informed them of my diagnosis I don’t think they wanted to sound insensitive.

My mum who is now a health visitor, was a nurse before this and had worked on a colorectal ward for a number of years. She started to question if this was just a simple case of Proctitis as surely an inflammation of the rectal lining couldn’t be causing this much pain? However, doctors still continued to stick with their diagnosis. I had a colonoscopy very early on when my smaller symptoms had just started (I was in for a third time getting a perianal abscess closed over which are common with IBD sufferers but I didn’t know this at the time), and all it shown was the rectal inflammation so consultants were not really keen on doing another one. Although, when the symptoms got worse I was given a steroid called Prednisone which I am sure most of you have experienced at least once. My dose varied up and down but my highest was 80mg a day for quite a long period of time.

Deciding I needed a much deserved break, my boyfriend booked us an 11 night holiday to Lanzarote! I was so excited as I hadn’t had a holiday in about 4 years and I thought the sun (which I absolutely adore) might help me relax. However, of course I still had my worries about the travelling part. What if I couldn’t find a bathroom quick enough? What if security stopped me and asked about all my medication? What if the heat actually made my nausea worse? But regardless of all these worries, I still got on that plane. This wouldn’t cost a single thought to others but my fellow sufferers will understand how proud I was to manage an approximately 4 hour plane journey! My boyfriend was extremely understanding and let me take control of the holiday – if I wanted to eat that was fine, if I didn’t? Also fine. If I wanted to lie in the sun and relax all day he didn’t push me to do anything else. I done some pretty cool things though, for example, travelling on a ferry to Fuerteventura for a day trip, taking a bus trip into the mountains to see vineyards and a green lagoon, and even managed quite a few drinks at a bar a couple of night before we left for home!

However, when I got home things got much worse. I ended up having to quit my job as I was too sick to work. My mum believed more than ever that this was not simply Proctitis anymore but something far worse, something like UC or Crohns. She had nursed people with these illnesses for a few years and knew the symptoms – they were all the symptoms I had. I continued to take steroids but anytime the consultant lowered my dose to try and take me off them, my sickness would flare up very badly. By the time Christmas came, I was jobless, barely left the house and my curvy 12 and a half stone figure was no more. I was down to under 9 stone by now and losing weight by the week. I barely ate and struggled to keep small meals down. Previously to this I had issues with extreme pain in my joints, such as my wrists, elbows, ankles, knees and hips. After a few x-rays, I was told it was arthritic pain, so another hurdle for me. This was also getting worse by the week too.

At the start of February I headed off to Manchester for a few days with my boyfriend and his friend, as they were seeing a Greenday concert and because I was too ill to go, I stayed in with my uncle who had kindly offered us to stay with him. I knew in my heart that I wasn’t well enough to fly, and it wasn’t a good idea to be so far away from my hospital, but I hadn’t seen my uncle in ages and I missed him. So of course, me being my stubborn self, I got on that flight and headed to Manchester. I regretted it almost as soon as we got to the airport. I felt nauseated, I couldn’t walk very well and I was so weak due to not eating more than a quarter slice of toast every day. Yes, you read correctly, not even a half slice, a single quarter slice. Which may as well be absolutely nothing, but if I kept that quarter down it was a good day. When we got to my uncles house, I went straight to bed. That’s where I stayed the entire three days until it was time to go home. Hardly a bite of food and struggling to keep water down. On the morning that we were leaving to go home, my joints were so sore I couldn’t even put my hair in a ponytail, and I cried when I had to walk. I was vomiting on the bus journey to the airport and in the airport itself. I started to ask myself how on earth I was going to get on this plane. How am I going to get home? I panicked, and I could see the worry and fear in my boyfriends eyes. It was up to him to get me home safely and honestly, I had every faith in him that he would. The worst was yet to come, and that was when we hit the security scanners. I started to feel dizzy and warm, taking off layers of clothes until I was down to my vest top. I could feel the sweat dripping off me and down my forehead, and I can honestly say I was so frightened. This was the first time I thought to myself ‘you might not make it home’. I was called forward and my boyfriend was separated from me to go to the other scanner, and they asked me to stand in a large pod, to raise my arms above my head and stand with my legs slightly parted. I tried to explain to them that I couldn’t do this but they would not listen. So I tried but the pain was too much. My eyes went out of focus and then blackness. I came round maybe a minute later and they offered me a chair, but the whole time I was worried they would not let me fly. After a lot of persuasion from my boyfriend and the acceptance of a wheelchair, they agreed to let me fly. We got priority boarding and I was glad to be sitting at the back of plane, so I would be able to reach the toilet in time. I had many different thought on the short journey back to Belfast airport, and each one as bad as the one before. There wasn’t a shred of the person I was left, I was exhausted and wanted to give up. I thought that maybe this was how it was supposed to be, maybe I wasn’t meant to see my 24th birthday. Like how can somebody live like this? By this stage I was under 8 stone and I felt I was so weak that if someone was to blow on me I would blow away. I had honestly given up. I wanted to sleep and never waken up again. I truly 100% believed I was going to die. I knew I wasn’t a person who overreacted or built things up to be worse than they are, so for me to even entertain thoughts of my own death I knew things had to be bad. We landed in Belfast airport and my boyfriend helped me into his mums car where she brought me to my mums house. My mum couldn’t believe the state that I was in, things had escalated very badly within just three days! This definitely wasn’t just Proctitis anymore, this was far worse and from her nurses perspective, I needed medical treatment urgently. There was no doubt about it, we were heading to the hospital.

 

Thank you for reading, keep an eye out for my next blog for the next chapter of my journey! Please feel free to ask questions in the comments or ‘like’ the blog.

 

Mel x

 

An Introduction about this blog and less importantly, the woman who is writing it.

To whoever is reading this, welcome! Thank you for clicking onto this blog and hopefully you will still be here at the end of it. So I wanted my first blog to give you, the reader an idea of why I have decided to do this and some background knowledge on myself. This is the first blog I have ever written, and I am hoping that I improve with time, so I do apologise if I am pretty rubbish at the beginning!

Anyway, as you can tell from the title of the blog itself, I am going to be writing these to (hopefully) give people as much detail and information as I can about how I dealt with my Ulcerative Colitis and of course, all the other important things that followed it. However, I will stress now at the very beginning (and probably frequently throughout) that everybody is different and each persons experiences will vary. Although one thing I found helpful during sickness and recovery was…yes, you guessed it, blogs! I have read so many blogs and stories from super inspiring people and recently thought to myself, maybe I could inspire some people too. Girls and guys, Inflammatory Bowel Disease is unfortunately becoming more common and especially in young people. But, regardless of how common it has been in recent years, a lot of people still seem so reluctant to talk about it. Is this really a taboo subject? Do people who don’t experience IBS or IBD really find it so difficult to talk about bowel movements? Maybe I am just very open to chat about things that other people have no desire to discuss. I know people who are extremely forward with their illnesses and how their illness has affected them (like me), and people who tend to be quite embarrassed and feel uncomfortable talking about it. There is no correct way to be when it comes to your health, be as outspoken or as reticent as you like as its your body and yours alone. However, the thing we all have in common is our need for more information and also thinking about how others cope with their IBD and whatever follows it. So I wanted to provide you guys with statistics throughout these blog entries, and of course you can search these online but I thought, hey I’ll save you the hassle! The crohnsandcolitis.org.uk estimates that 1 in 420 in the UK suffer from UC, this is roughly about 146,000 people. That’s a hell of a lot of people so surely there should be more awareness. However, the crohnsandcolitis.org.uk have a very helpful website so if you haven’t already, do give them a visit when you have time.

So  I also wanted to give you a little background on myself, so that you’re familiar with me if you so kindly decide to continue reading my entries. My name is Melissa Donaldson, I am 24 years old, and I live in Northern Ireland. I could start telling you about where I live but it’s quite a boring town, and I am completely confident that you would rather watch paint dry than read about it! I am surrounded by a lovely, supportive family and a boyfriend who has been quite literally a saint. I think it is easier to look around you and be more concerned with how your family are suffering than to be concerned about yourself. It is always my hope that every person out there, young or old, has at least one special person to help them cope with their IBD but I know that’s unrealistic considering how many people suffer from this. I count myself as a lucky one to have such a great circle of people to pick me up when I was down (and believe me, I was ‘down’ quite often). But, I will talk about them more throughout the entries and you’ll be able to understand why I appreciate them so much.

I’m going to end my introduction here as I want to keep it quite short and sweet. I really hope you will continue to read what I have to say, and I am always open to questions in the comments or suggestions on new entry topics, so please don’t hesitate to have your say. Also, constructive criticism or lovely comments are also very welcome in the comments section too. Again, thank you so much for reading and keep a look out for my next entry!

 

Mel x