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.