Crohn’s Surgery – What to Expect

My First Time Hospital Experience

This blog post is based on my experience in lead up to and first time in surgery (and staying in hospital).

What: Right Hemi-Colectomy (approx 45cm large & small intestine removed – at the terminal ileum).

When: Jan 2016

Pre Operation

Living in Far North Queensland, I did not have a chance to meet my Surgeon face to face, however a conference-call with my surgeon (in Brisbane) was arranged with myself, my GP, my dietician. I am so thankful that my GP and dietician were there as my support team during the call.

My top tip for the conference-call is preparation and know what you want out of this initial consultation. For me preparation was writing down notes/ questions before the appointment. I also asked my GP and dietician to capture the important points as I didn’t want to be writing and listening at the same time.

In hindsight, some of my questions were not necessary  but it eased my nerves speaking my mind and getting everything off my chest. My questions were:

• Will I need a ileostomy?
• Will it hurt?
• How long will it take to heal?
• Will it be open or keyhole surgery?
• How long will I be in hospital?
• When can I go back to work?
• When can I start exercising again?
• Will I have uncontrollable bowel movements after my illeocecal valve is removed?
• Will I be deficient in nutrients or have ongoing malabsorption issues?
• What is the likelihood of needing surgery again?

I also watched a similar operation on YouTube (yeah, probably not the best idea but I had questions regarding that too).

My surgeon was incredible, from that first call he made me feel calm and safe. He answered all of my questions (even if some of the questions were a bit irrational) with a sincere educated answer. Plus he said he was training for his first triathlon too so we had instant connection!

Day before Surgery

The day before surgery I had to fast, only consuming clear liquids. At this stage I was pretty much on a liquid diet (living off pumpkin soup and the supplement “Resource Plus”) so I didn’t struggle with not eating. The hunger did set in the morning of my operation.

Day of Surgery

I made friends with a man schedule to have his large intestine removed due to Bowel Cancer, we kept each other company discussing what our post operation meal would be in the waiting room. I was craving pikelets with strawberry jam and his choice was a big steak.

It was my time to go in (another tip: be patient – there may be a lot of people in front of you, for me I waited about 4-5hour after arriving at hospital). The nurse gave me two pills to “calm and relax me” (sleeping pills I think). This photo was taken about 15min before I went in (below). I don’t even recall entering the theatre, I remember being outside the theatre doors in the hospital bed with my surgeon and theatre nurses chatting to me about sport and fitness and all of a sudden I was asleep.

Waking up in recovery was the most painful experience I have experienced to date. I wouldn’t even call it waking up as every time I felt conscious I was howling in pain and I believe my nurses kept putting me back under / upping my pain relief. It was all a haze, but I remember the pain.

The next thing I remember was slowly waking up in my hospital room just as my parents and partner were about to leave as it was very late that night. I was drunk on pain relief and I don’t think I made much sense. My parents told me later that I kept saying my lips were dry and making kissing and puckering up my lips. Before I knew it I was out of it again.

The first night was probably was the worst night in hospital. The pain was terrible, and it was my first night ever in hospital so I didn’t know what to expect.

Hospital Experience and Tips

Machines beep.

During my first night the machines went off beeping in my room. This being my first time in hospital I did not know what it was beeping about. It was late at night and I had just fully woken up from surgery. My parents and partner had left so I had no one in the room.  I was very worried as I didn’t know what the beeping meant and I thought it was really serious. It wasn’t serious.

Appreciate the good nurses and provide feedback.

Like everyday life and other careers there are good people and not so good people. Be kind, be patient but expect the same from them. If you have a bad experience or good experience ensure you let the hospital know in the feedback forms. I experienced both amazing nurses but I also experienced a handful of ‘nasty’ nurses.

Pain Relief and Poop.

First of all, you will experience pain. You will need pain relief. I was in a Catch 22 situation where they wanted to wean me off the pain medication so I could have my first bowel movement as the pain meds clog you up. At the end of the day it comes down to your pain threshold. I was trying my absolute best to not keep pressing the pain med buttons. My first bowel movement was about 7 days after surgery.

Urine Trouble. 

I had issues from the beginning with my urine. The first night I had an extreme urge to urinate. The nurse explained I shouldn’t feel the need to urinate, it should just come out as I had a catheter in. I explained that I am holding it in and it is really uncomfortable. She checked the level of my urine and said it was fine and then left. I decided I couldn’t hold onto my bladder anymore and I just let go. I ended up urinating the bed. I called the nurse (which again took longer than one would hope) and explained I wet the bed. She checked my catheter and it had a kink in it. Just what I needed on my first night in hospital.  The nurse and another nurse changed the sheets while I was on it (not something you want when you are in pain).

Another urine tip… If it hurts to urinate (or if your urine smells funky), ask for a urinary tract infection test. Every time I went to urinate I would have to hold my stomach and have the worst pains. And my urine smelt so funky. I thought it was just the pain from the surgery however I had contracted an UTI.

Needles.

In hospital you will receive needles daily. To prevent blood clots I received heparin. Usually heparin is injected into your stomach however since my stomach was where my operation was I did not want it there, so I had it injected into my legs. I felt like the biggest pin cushion. The heparin needles do sting a bit but it’s better than getting blood clots. The other thing about heparin is that it leaves you with lots of bruises. I had bruises on my legs up to 2 weeks after I left hospital.

I am so proud to say that I’ve nearly conquered my needle fear.

Visitors.

I can’t tell you how nice it is to have people visiting you while you are in hospital. Even though on several occasions I was asleep or out of it, it was nice to know someone was there. I was fortunate enough to have my parents and partner visit me every day and my best friend from the Gold Coast drove down to see me a number of times. They say laughter is the best medicine. Unfortunately it is the worst medicine after bowel surgery. Laughter causes a lot of discomfort and pain. Along with laughing; coughing and sneezing also causes a lot of discomfort. To help relieve the discomfort press a pillow on your bowel while sneezing or coughing.

Sleeping.

You will try and sleep a lot. Depending on the pain medication you will sleep for a couple of hours straight or you will be in too much pain to sleep. I dazed in and out of sleep and when I was awake I wasn’t really with it. Despite being not much entertainment for visitors and wanting to just go to sleep without pain, having someone there sitting or within eye sight is more comforting that you would think.

I found lying nearly upright on my back (there was no other option) was what made me feel the most comfortable.

I hope this post provided you with some insight into what to expect for your first hospital experience. It will vary depending on your hospital, medical staff, condition, surgery etc. Stay strong and stay positive.