It has been a couple of weeks since I had my surgery so I thought I would share my experience for any of you who may have to go through something similar.
Please note: there will be talk of needles and what not in this post. If you are not into this do not read it. It is my intention to inform people of my experience and I will be completely honest and candid in this post.
Before the surgery...
As you know from previous posts I was diagnosed with Crohn's Disease in 2012. All was going ok for the most part but everything came to a head last Christmas when I ended up in hospital with a perforated bowel. I was kept for 6 days in hospital on intensive treatment and then I was put on a liquid diet for more weeks than I can count.
In January I saw my specialist (who can I add has been absolutely amazing through all this) and was referred for an MRI in February. I was a small bit alarmed at how quickly things were happening so I knew something wasn't right. I also found my symptoms were getting worse quiet quickly with constant cramps and exhaustion.
I had the MRI and it came back that I had two fistulas, which are abnormal tunnels. going from my small intestine into my colon where they shouldn't be and I also had 40cm of my small intestine that has penetrative disease. This essential meant it was gone past the point of repair and surgery was the only option to fix these problems.
I remember the day I was told I would have to have the surgery. A lot of information was thrown at me and I was extremely worried about everything that could go wrong. After a good cry I pulled myself together and started to research and visit forums to be prepared for the surgery.
This was both a good and bad thing. I knew all the information I needed to but some of the stories I read of other peoples experiences terrified me. One of the main things I was fearful of was having an iloestmy bag. While this wouldn't have been the end of the world it was something I couldn't get my head around and everytime it was mentioned I was a blubbering mess.
I saw my pre-op nurse the week before surgery and she went through everything that would happen. I also got blood taken and she answered any questions I had. I will say for anyone going for surgery there is no such thing as a stupid question and I can guarantee you are better off asking than dwelling on the unknown. I also met the anesthetist who explained everything you need to know about general anesthetic.
This process is very overwhelming and I was glad my mum was by my side as there was that much information given I forgot half of it before I left the appointment. This appointment lasted about 1 hour 30 minutes and I was a bag of mixed emotions at the end of it.
Having fasted from dinner the night before I headed into the hospital, 'checked in' to the ward and waited impatiently to get things going. I was visited by countless doctors and nurses including a Stoma nurse who marked a spot on my stomach of where the stoma would go if needed. The hours slowly ticked by and I finally went down to theater. Ma and Da walked me down to the doors and I honestly think it was worse for them seeing me go in than it was for me.
I was wheeled into the room, hooked up to a heart monitor and the anesthetist came in to do her thing. I do remember the monitor going bananas as I was being put under as I was anxious not knowing what to expect. The nursing staff were fantastic and after briefly calming down I went to sleep.
I woke up in a recovery room and remember the nurse telling me I had no bag. This was a miracle as they were 90% sure I would need one.. I don't remember anything else from that night except them exact words... 'No bag, Katie'.
Any surgery is invasive and they had warned me about tubes coming out of everywhere. For the day I was unable to get out of bed and therefore I had a catheter hooked up to my bladder to ensure I was able to go to the toilet. I was hooked up to a drip and was unable to eat. There was a tube going down my nose into my stomach and I was also on oxygen. There was also a dressing with suction that meant I had a little square 'machine' hanging from stomach. I also had a morphine pump which was well used and well loved. :) I didn't get much sleep the first night as the ward was busy and as everyone knows it's hard to sleep in hospital at the best of times.
The following morning my voice was completely gone from the tube down my throat. It was very uncomfortable and getting it out hurt slightly but it was a major relief. The physios then came to see me and I can honestly say, while they were lovely people I honestly dreaded the sight of them coming. They got me out of bed and I literally moved 2ft to the chair. I thought my stomach was going to tear open when I stood up for the first time and felt extremely dizzy and nauseated. The following day they made me walk up and down the ward and when I say a snail would have bet me in a race I'm not even exaggerating. I also had the tubes still everywhere so having to maneuver them was an ordeal in itself.
The next few days seen the tubes going slowly and when I finally got the catheter out it made moving around a lot easier. I was put on a diet of soup and potatoes for breakfast, lunch and dinner. I haven't had soup since!!
Because they had to remove more from my bowel than they thought it meant there was three internal wounds which meant getting the bowels to work again was extremely painful. For two days I had trapped wind which was a pain I cannot even begin to explain and the first time I actually had a bowel movement I legit thought I was going to die! (Dramatic I know!)
After that first movement things slowly got easier every time. It was still immensely painful and there were times when I regretted even getting the surgery done but I was reminded that things take time and I had to walk before I ran.
I also had to get bloods done everyday which was a bit of a nuisance when you only have one good vain. I still have bruises from the countless prods and pokes encountered. After 6 days in hospital I was told I was allowed to go home but I had to get an Iron Infusion before leaving hospital. It was the longest 20 minutes of my life waiting for the drip to go in and as soon as it was finished I hurried out the door.
2 weeks on...
The pre-op nurse had told me 'the real recovery starts when you go home' and how right she was. I was on a high the day I came home and stayed up till near 11... two days later I was bent over in pain unable to move for the day. It is day by day however each day I can see a small improvement.
You have no idea how good it feels to be able to lie on my side now. I'm still on a soft food diet however being able to eat food is a great feeling. My new life motto is 'It's a good day you can eat' and when someone says they shouldn't be eating that bar of chocolate or piece of cake that's when the statement is most prevalent.
Overall I am feeling a lot better than previous months. The recovery processes is 6-8weeks however it can take up to a year for everything to return to normal. I am only two weeks post op and while I am feeling good I know myself I am by no means ready to run marathons(not that I would ever be!)
Hindsight is a great thing and if I had to do this all again I would not be as fearful this time round. While my Crohn's is not curable I am hoping this surgery will give me a new lease of life and I hope my illness can be maintained with medication this time.
If being sick has thought me anything it is to live life to the fullest. I know it is so cliche but life is too short and especially when you have something like this you have to seize the day. Travel when you can as far as you can. Eat what you want. Don't worry about what others think of you. And say yes now, worry later.
I know this was a long post so if you got this far thank you and I hope you have learned something small about living with Crohn's Disease. To anyone going through this or something similar, know it does get better! Slowly and steadily things will improve. Trust me! ;)
Until next time.
Today's blog post is extremely personal and I have fought with myself back and forth as to whether I was even going to post it. For 2017 I want this blog to move forward and I want to start informing people about the ups and downs of living with Crohn's Disease.
I wrote a blog post (Linked Here) two years ago for Invisible Illness week in which I made the move to tell everyone of my condition. Two years on I haven't done anything else and feel people need to know and understand this illness.
The past four years have been a roller-coaster of highs and lows but all came to a head at Christmas when I was admitted to hospital with a perforated bowel. I was on a family trip to the Prague Christmas Markets when I started to feel unwell and spent the whole break in a hotel bed. When I look back now I was lucky to even get home. A word to the wise, don't google anything cause you will instantly regret it. I thought I was fine and didn't know why everyone was fussing... Then I found out how serious this was and let's just say, there was very little sleep got after that!
,Having something like that happen to you, where your life is literally brought to a standstill really puts everything into perspective. The things you were worried about prior to this seem minute, the bills you have to pay, the things you NEED to get done all fall by the wayside. There is nothing you can do and life continues to go on like normal.
While I was in hospital I was put on bowel rest to help heal the wound inside me, while being pumped with all kinds of fluids and antibiotics. I was not allowed to eat or drink anything for 6 days and believe me when I tell you, the not eating was fine, but those silly cotton swabs they give you to dab your lips are a load of nonsense.!
This was all new to me, I've had bad periods over the last four years and I genuinely thought I was having a bad flare up and I'd be fine in a couple of days. Worst case I'd go to my GP and get some antibiotics. Having no drink for 4 days was one of the hardest parts of the whole experience.
Liquid diets are Sh*t!
After a week spent in hospital I was finally allowed to go home and was put on a strict liquid diet for 10 days. This was probably the hardest part of the process as with it being Christmas time, all I wanted was sweets and wine and chocolate! This is where I found out I am not cut out for any liquid diet to lose weight... It is not worth the hardship! My advice to any of you doing shakes is STOP! It's a good day you can eat so why avoid it! Eat healthy and exercise, it will take a little bit longer but you will get the results! It is only when it is taken from you, you appreciate something as small as a rice crispie! :)
The recovery process
While I am feeling a lot better and I am here to annoy you all, my journey is by no means over. The next few months consist of scans and bloods and various test to see can we kick this illness in the butt! I still have days where I am reduced to a liquid diet as I am too sick to eat (today being one of them days). There are other days when I feel like there is nothing wrong at all but to be honest these days are few and far between.
The one downer about having Crohn's is it's incurable... Some people are lucky enough to go into remission from medication. The doctors are still trying to figure that one out with me. I quote my specialist 'The more I deal with this, the less I know about it' that was in reference to me ending up in hospital while on very strong medication that should have prevented the problem.
I was taking injections and while I thought they were improving things I know how to look for an alternative. It's not all doom and gloom though, the scare I got at Christmas is making me face things head on now.. I've applied to go back to college, I've booked a holiday with no money! (I will be saving every penny) and I've learned how strong of a person I am. *queue inspirational music here*
The whole point of this blog is not to receive any sympathy, I've been living with this for the past four years, I will be living with it the rest of my life and quiet frankly, I don't want any. The point is to tell you to not hold back on life!
If you are thinking of doing a course, going to Antarctica, writing a book or simple dying your hair... why wait? You never know what is around the corner. Look back on your life saying 'I can't believe I did that!' rather than 'why didn't I?' Life is way to short to second guess yourself even once.
In the words of the great sports brand Nike..... JUST DO IT! Haha! :)
Until next time,
After months of neglecting this blog I'm back with a bang talking about something off topic but hugely important to me. This week is 'Invisible Illness Awareness Week'. (I didn't even know there was such a thing). Why am i writing about this? Well, I live with an invisible illness on a daily basis.
Three years ago my life changed drastically as I was diagnosed with Crohn's Disease. After years of unexplained sickness and every test imaginable I was both relieved and heartbroken when I was diagnosed with this incurable illness. Relieved that there was finally an explanation to the mystery sickness; and heartbroken that I was faced with a condition that will affect me for the rest of my life.
What is Crohn's Disease?
Crohn's is an inflammatory bowel, autoimmune disease which affects areas of the digestive track. It causes inflammation of the lining of your digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition. It is a highly embarrassing illness that is rarely talked about. Most people have never heard of it. Yet over 20,000 people in Ireland suffer with this illness. Most of these people suffer in silence looking perfectly healthy on the outside but crippled on the inside.
My Crohn's Story...
In the years leading up to diagnoses I was very sick. I could not digest food properly, I had ulcers everywhere and I was tired all the time. Whether I got two hours sleep or twenty hours sleep it made no difference. I missed an enormous amount of school and had to deal with some relatives thinking I was 'faking' for a day off.
When I was first diagnosed my life was turned upside down. I had to come out of college as I couldn't attend lectures and keep up study because I was so sick. I had to restrict my diet to rice and chicken breast, I was lacking in every vitamin you can imagine and I started treatment by testing medication. I was fortunate that the first trial medicine worked for me and I have to take minimum 6 tablets daily.
Living with an Invisible Illness...
Living with this illness is difficult to say the least. I have to take every day as it comes. Some days I am full of life and ready to take on the world. I can eat what I want and not worry about where the nearest bathroom is and I can just be normal, look and feel healthy. These are my good days and I'm thankful for every one I have.
My bad days are awful. From the moment I wake up I feel ill. I have no energy and spend most of my time lying down or in bed. I cannot eat anything and if I do it makes me worse. I still look healthy, but I feel miserable. Today is a bad day, but I've got through it like always, and hopefully tomorrow will be better.
It's not all bad though!
I have been fortunate enough to have an incredible support system. Both my family and friends are compassionate and understanding when they could be frustrated.
I have learned how strong I am and how even though I've been cursed with this it won't stop me from doing anything I want to do. (It just might take a little longer than usual).
I've lost some much needed weight through both sickness and working my ass off with a personal trainer. 95lbs to date!
I've learned life is for living and to enjoy every minute of it. My illness won't stop me seeing the world!
The point of this blog post is not to have you feel sorry for me, I don't need any sympathy and it's not me looking for attention either. It is purely to raise awareness for us soldiers living with invisible illnesses.
If I had a broken arm - you would see it, you would know my arm is broken because it would be in a cast. You would understand it was sore and painful. Think of these invisible illnesses as a broken arm, just on the inside! I look healthy but I'm fighting a battle with my health every day.
I AM A WARRIOR!
Thank you for reading this far. I really appreciate you taking the time to read my story. Hopefully you are more aware of invisible illnesses. And if there is anyone suffer in silence I'm a listening ear if you need to talk or vent or whatever.
Until next time...