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.

Update from Kate

When you think everything is going swimmingly a shark appears. This is what happened at my 6month post op follow up. After my surgery in January last year I honestly thought I was cured (aka Crohn’s free). By no means was recovery easy but around 6months post surgery I was feeling healthy, fit and had started feeling like myself again.

In July 2016 my gastroenterologist visited Weipa and I had my 6month colonoscopy check up. (Stay Tuned for my next Blog Post: What to expect / Top Tips for a Colonoscopy)

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Coming out of my colonoscopy I was feeling pretty confident that I’d get the green light and continue living medication and Crohn’s free. However, my fairytale was not to be… inflammation had started back in my intestines around the section I had removed. The good news, it was relatively mild inflammation. To reduce the likelihood of further inflammation and to keep me in remission, my gastroenterologist prescribed me with treatment (Mercaptopurine).

Mercaptopurine (6-MP) is an immunosuppressent chemical therapy drug used to treat acute lymphocytic leukemia, Crohn’s Disease and Ulcerative Colitis. The immune system is important to fight off infections however with autoimmune diseases it is our immune cells that attack the body causing inflammation (for me, inflammation of the small and large intestines). Mercaptopurine is used to suppress my immune system and therefore reducing the attack and inflammation of my intestines.

For more information on Mercaptopurine use for IBD see this I recommend this information leafet that my doctor supplied me with. It can be accessed on the Crohns and Collitis UK website or through this link: 

Mercaptopurine

This treatment has some pretty severe side affects so it was important to monitor and control how my body reacted to the drug. I was booked in for bloods every Tuesday and consult every Thursday for the first 6 weeks. Once my medical team were happy that my body was responding well I would be given the all clear to have this as a long-term treatment.

Unfortunately I did not respond well and the dosage was too high for my body causing me to get fatigued, weak, weight loss, hair thinning and just generally unwell. The treatment was toxic to my body. This occurred over a number of weeks and it was a very difficult time, mentally, physically and I really struggled. The silver lining was that 6-MP was treating my Crohn’s and inflammation had reduced. While  the treatment was treating my Crohn’s, my body was not coping with the side affects. I ended up going off the medication for 3 weeks to ‘detox’ my body before returning at a quarter of the dosage as well as introducing the Allopurinol to stop my body metabolising the toxicity produced by 6-MP. Basically, the Allopurinol is taken to act as a blocker to the bad by-product 6-MP produces but still allows it to treat my Crohn’s. It’s been nearly 4 months on the lower dosage of 6-MP + Allopurinol and I am happy to say I am feeling GOOD! Not 100% back to the healthy, fit, enthusiastic Kate but definitely an improvement and I continue to improve every week.

Where I am currently at:

Exercise

I am not training for a triathlon or any events at the moment and I don’t think I will be for at least the next 6 months.

Currently my exercise regime is light with no endurance training. I am just focusing on moving my body for my sanity, enjoyment, general fitness and strength. Since I am currently on roster (working 4 days, 4 days off), my exercise is generally done on my 4 days off.

Run or Bike: 1x/week. I don’t do both running and cycling, I alternate each week. My run will be a jog at Park Run (if I am not working) or my cycle would be a 20km outdoor cycle or a 45min wind trainer session.

Gym: 2x/week. I am on a new training program from my strength coach James de Lacey (from DIME Performance). I’m on week 4 of the program and absolutely loving it. It’s low volume, short sessions but effective.

Swim: 1x / week. I aim to do a 30min swim each week, at this stage it’s just a 1.5km easy continuous swim.

Squash: 1x/ fortnight. I generally play a game of squash when my partner is off work.

Not all weeks are like this, some weeks I will just take my dog for a walk and maybe one gym session. It’s all about how I am feeling at the time. I think that is the biggest learning curve I am facing. I can’t keep up with what I used to do. It’s about focusing on the now and being thankful and content with what my body allows me to do that day.

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Work

I have been fortunate to have support during my adjustment period of my treatment with the flexibility to attend all my tests and monitoring appointments. I am currently on a secondment working roster (compared to my usual Mon-Fri role) until May. Although I work longer hours and am on call throughout the night, the roster and flexibility has definitely helped with my recovery as I have 4 days to recover from work compared to only 2 days. I urge anyone that is suffering from Crohn’s to be fully transparent with your employer. Although Crohn’s hasn’t impeded on any on my work apart from absence with surgery, it is important that my leader understands my disease and side affects from the treatment I am on. Crohn’s and Colitis Australia has two information booklets, one for the employer and one for the employee. They can be found in the following links:

Working with IBD – A Guide for the Employer

Working with IBD – A Guide for the Employee

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Energy

I still get fatigued and my batteries run out quicker than others but it’s nothing I can’t manage myself. I listen to my body, ask for support when needed, fuel my body with A LOT of good food, drink A LOT water, move my body and rest when I need. I may not be Crohn’s / medication free (yet!) but I’m managing with a smile on my dial.

So there you have it, the Update from Kate. Now I am back ‘online’, I will be back to consistent blogging. If you have any questions feel free to drop me a message in the Contact Me tab.

Thank you to everyone that has supported me or reached out to me. The messages mean so much to me.

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Stay Strong Spoonies!

Overview of Crohn’s Disease

Crohn’s Disease, like many other autoimmune diseases affect all aspects of your life including: working, eating, sleeping, socialising, travelling and exercising. I will be releasing a blog post each week highlighting different aspects of my life and experience with Crohn’s.

Before and after diagnosis I experienced the struggles, the embarrassment and the challenges that come with the disease. Being a “glass half full“ kind of girl I always try and find the positives in a less than desirable situation. The amazing support of my family, friends and medical team, and developing a strength that I never imagined existed are just two of positives.

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When I first received my diagnosis one of the first things I did was Google “Crohn’s Disease”. I wanted to know what, why, how, who…. question after question I was searching.

My goal of FitnessandGuts is to provide a hub of information, experiences and tips for anyone who has been diagnosed with Crohn’s Disease, or an Autoimmune Disease. FitnessandGuts is not solely just for Crohn’s Warriors, it will provide fitness, nutrition, and motivation blog posts with a dash of Kate quirk and of course PUNS!

What is Crohn’s Disease?

The CCFA (Crohn’s Colitis Foundation America) have created this short video which gives you a run down on Crohn’s https://www.youtube.com/watch?v=B8ryJ9P38B8

Currently, approximately 75 000 Australians suffer from Inflammatory Bowel Disease (either Crohn’s or Colitis).

Crohn’s Disease is a chronic autoimmune disease that causes inflammation of the intestinal tract. The intestinal tract includes your mouth, esophagus, stomach, small/large intestine, rectum and anus.

Symptoms

Crohn’s Disease symptoms can include:

  • Diarrhoea (or sometimes constipation)
  • Uncontrollable Bowel Movements
  • Bloody Stools
  • Vomiting
  • Cramping
  • Fevers
  • Weight Loss
  • Malabsorption causing Malnutrition
  • Anaemia
  • Skin Rashes
  • Mouth Sores
  • Eye Sores

What I had: all of the above symptoms, excluding for the last three.

Complications

There are complications you may experience with Crohn’s Disease resulting in surgery, the complications can include:

  • Strictures
  • Abscesses
  • Fistulae
  • Fissures
  • Severe malabsorption and malnutrition

What I had: stricture, which resulted in my urgent surgery. During surgery it was discovered I also had a fistulae (fusing onto my urinary tract).

Diagnosis

  • Blood tests
  • Stool tests
  • Colonoscopy (and/or endoscopy)
  • Biopsy from scope procedure
  • X-rays of your abdomen
  • CT or MRI scan.

What I had: blood test, stool test, colonoscopy and MRI.

More Information

What’s Next

Take your future into your own hands. Don’t sit back and wait to be ‘spoonie’ fed, get out there, research, share experience, seek medical help and be open to try different things to see what works for YOU!

Stay tuned for more posts about my experiences and tips: health, nutrition and fitness!

If you have any questions or feedback for me, please visit my Contact Page and drop me a message, and I’ll be sure to catch it and throw one back.

Top Tips for Living with a Chronic Disease

I love sport, I love food and I love adventures. Unfortunately I was diagnosed with a disease that has made doing the things I love very difficult. Late last year, October 2015, I was diagnosed with a Chronic Autoimmune Disease, Inflamed Bowel Disease called Crohns Disease. Most people have not heard of Crohns unless they have it or know someone who has it. I have gone through the wars with this disease and currently in remission and on the road to recovery to do the things I love! 

 

I decided to collate my top tips for anyone living with a Chronic Disease, in particular tips from my own experience that have helped me cope with Crohns, specifically with exercising/training.

 

Health

Know and Respect your Limitations

Listen to your body. In my case, my gut. You know the saying gut feeling? It’s a thing! Your gut is your second brain. If I had a dollar for every time I have felt drained and unwell but I have tried to keep up with other people, I’d be rich! A friend named me Astro Girl as I am usually full of energy “Go! Go! Go!” and then all of a sudden I run out of batteries and will just turn off. At first (before diagnosis) it was very frustrating as I loved to train (swim, bike, run) on weekends and then go out at night and could not understand why I would feel so ill and fatigued. It wasn’t until I was diagnosed Crohns and was informed that my intestines were so inflamed nutrients were not being absorbed resulting in anaemia.

Fuel your Body

Keep a food diary. Not only does this help you keep track of trigger foods but it is also important to take note of your intake of food especially when training to ensure you are getting enough energy. Some illnesses you need a higher intake of food as your body is working overtime fighting the disease. Your appetite will vary along with symptoms and it is important to keep your body fuelled even if it is through liquid form (if you can’t handle solids). It is beneficial to see a dietician if you are unintentionally losing weight as you may require a nutritional supplement.

 

Rest and Recover

Fatigued? Exhausted? Similar to knowing your limitations and fuelling your body, I can’t stress enough that everyone has different requirements. I need a good solid 8-9 hours sleep per night otherwise I get completely run down, compared to other people who can handle less than 6 hours. It can be hard to keep on track with your training program when you don’t know how your body is going to handle the day. Playing it by ear, or in my case playing it by gut. Don’t push through as you will probably make yourself sicker. For me the best thing is to rest and rehydrate and if I am feeling up to it some active recovery (walk, yoga etc).

 

Share Experiences

They say misery is always better with company. Although I don’t wish this disease on anyone, it is comforting to know that I am not in this alone. There’s a small army out there fighting to find a cure. It is a very scary prospect being diagnosed with a disease or undergoing surgery, therefore hearing feedback and advice from ‘veterans’ help ease the uncertainty. For instance, before my surgery I was told that sneezing, coughing and laughing will really hurt after surgery and that pressing a pillow against my stomach will help limit the pain. Thanks Emma for that advice!

 

Support Network

Similar to sharing experience, a support network will be you rock throughout this journey. Your support network does not have to have a team of disease sufferers, they can include your partner, your parents, your friends, a counsellor, a doctor, a nurse. It is really up to you who you can rely on to support you on your journey. For me it is my partner, my parents, my sister, a few close friends, my doctors and my dietician.

 

Seek Medical Advice

It is very important to have a reliable, trustworthy, caring GP. Your GP will co-ordinate/ refer you to a specialist, surgeon, dietician, physio etc. Don’t be afraid to ask questions (no question is silly!), bring your own research to the table and ask for their medical advice. Your GP can also assist you with your current quantity of training and if you are in a state to continue at that level or need to back off. It is also very important to discuss with you doctor / physio a gradual return to exercise plan after any surgery.

 

My biggest tip is find the doctor that is the best fit for you. If you like asking lots of questions and don’t settle for someone who rushes you along. This may take time as it may not be your current GP. I was so fortunate to have a great medical team, GP, dietician, gastroenterologist, IBD nurse and surgeon. Forever grateful.

 

Research

Research. Research. Research. I’ve learnt that no one is going to help you unless you help yourself first. It’d be lovely for someone to come knocking at your door with a big bunch of answers but it’s really up to you to determine what you want to do and how you want to live your life. Be proactive, not reactive… I want to be cured not just treated. Like I mentioned before, medical advice is vital however do not just settle for an opinion of one doctor, explore your options, seek different opinions until you find the best fit.

 

Another topic to research is nutrition. Everyone has different perspective on what your ideal diet should be and an opinion on diet and it’s role in autoimmune diseases. To determine if diet can help you, research and experiment. Explore different diets to see what best suits you, whether it is the elimination diet, raw foods, paleo, GAPS, plant based, the list is endless. Remember do what works for you!
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