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

When: Jan 2016

I’ll start by saying I used to have an extreme fear of needles, blood, doctor surgery’s, medical TV shows, sicknesses, people talking about needs/blood/surgery… oh man it would give me the heeby jeebies. I am not too sure where or when this fear developed, I just know that ever since I can remember I would avoid having needles or going to the doctors like the plague.

In January 2016, I required a Right Colectomy, removing approx. 40cm of my large/small intestine, including the ileocecal valve (along with my appendix). I will never forget hearing “you need urgent surgery”. I felt scared, helpless and upset.

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.

Some of my questions were probably a bit naive or silly to some but I wanted to get everything off my chest. My questions were:

  • Will I need a bag?
  • 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 the illeocal valve is removed?
  • Will I be deficient in nutrients or struggle to absorb nutrients when you remove the section of intestine?
  • What is the likelihood of needing surgery again?

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

In hindsight, a lot of my questions were unnecessary. My surgeon was truly 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 silly or 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

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I made friends with a man schedule to have his bowel 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 really didn’t know what to expect.

Before Surgery

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After Surgery

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.

I started this post explaining my extreme fear of hospitals / needles. My partner had never seen someone have an anxiety attack until he saw me getting a drip put in me for my first colonoscopy. I can’t really explain what happens but basically I turn into this complete irrational person, turning pale, crying, shaking.

In hospital you will receive needles daily. To prevent blood clots I received heparin. Usually heparin is injected into your stomach so it doesn’t hurt as much 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 and they are uncomfortable 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 although needles are still one of my fears, my anxiety attacks are close to none (except for when I receive a drip… they are the worst for me).

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.

Stay tuned for my Post Operation Recovery post where I will detail the first few weeks post surgery.

Crohn’s Disease – Diagnosis Journey

This blog is based on my experience, aiming to edu-kate people who are experiencing similar ongoing gut related issues to be tested for Crohn’s Disease. Early diagnosis may reduce the likelihood of surgery. 

April 2015 – New Job, New Town – Crohn’s Not Diagnosed

After a few days moving to Far North Queensland and starting my new job I experienced symptoms:

  • Vomiting
  • Diarrhoea
  • Sweats and Fevers

As I was living in the Single Person Village (mining town camp) until my housing was ready, I believed it was just food poisoning from the camp food. I didn’t go to the doctors, I thought it would just pass. It did, after 5 days.

July 2015 – Bramwell Rodeo Camping Trip – Crohn’s Not Diagnosed

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Winning the Jelly Eating Competition at Bramwell Rodeo (that night I got very sick, thought it was just the jelly or the water)

During and after a 2 night camping trip to Bramwell Rodeo (in Far North Queensland), I experienced more symptoms:

  • Vomiting
  • Diarrhoea
  • Sweats and Fevers
  • Severe weightloss (6kg in 9 days).

I went to the doctors and was prescribed with antibiotics as it was thought that I had contracted Giardia. I provided a stool sample to get tested. The symptoms persisted after the first course of antibiotics and the stool sample returned negative. After returning to the doctors I was prescribed with another course of antibiotics. The GP was still convinced it was Giardia as it was going around town. After the second course of antibiotics my symptoms reduced so no further tests were undertaken.

July 2015 – September 2015 – Continual Gut Problems – Crohn’s Not Diagnosed

After my “giardia episode” I continually had cramps (severe enough to disrupt my sleep), my appetite disappeared as it hurt to eat, a number of diarrhoea episodes daily and fatigue. During these months I was training for the Sunshine Coast Half Ironman, in September. I returned to the doctors and it was believed that my body was just recovering from “giardia” and I may experience IBS symptoms for a few months.

With that knowledge I continued to push through and train for my half ironman despite struggling physically. I completed the half ironman (walking most of the run before heading to the medical tent). I was not well.

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Day before I completed a half ironman with active flaring Crohn’s (unknown to me).

The next few days I was very sick and I thought it was a result of pushing myself too hard at the event.

October 2015 – Trip to the tip of Queensland, Cape York – Crohn’s Diagnosed

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Last trip before diagnosis (a week after the half ironman)

After returning from a trip to the northern most point of Queensland I discovered blood in my stool and collapsed in my bathroom after excessive diarrhoea and vomiting. I immediately went to the doctors where bloods and a stool sample were taken.

My inflammation marker was extremely high (the highest the Weipa Hospital had seen). I was fortunate that a Gastroenterologist was coming to Weipa that week (a Gastro visits Weipa every 3months).

That week I had my first colonoscopy.

Findings:

  • Inflammation in the caecum and at the ileocaecal valve.
  • Stricture at the ileocaecal valve (scope could not see my small intestines).

The biopsy confirmed I had Crohn’s Disease. I was prescribed with steroids in hope that it would reduce my inflammation and that it was localised.

However, symptoms persisted even on steroids and I was required to have an MRI so they could see my small intestines.

It was confirmed that the inflammation had been there too long and therefore had scarred (stricture) in my large and small intestines. I required urgent surgery to remove this section.

January 2016 – Right Hemi-Colectomy – Bowel Surgery

I required a Right Colectomy, removing approx. 40cm of my large/small intestine, including the ileocecal valve (along with my appendix).

 

Stay tuned for my next blog post on detailing my first time surgery and hospital experience.