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.
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 not severe 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:
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:
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.
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
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.
Stay Strong Spoonies!
One thought on “Update from Kate”
You’re a tough cookie Kate. I love the positive attitude you have despite all the adversity. You’re definitely one of my favourite 3 nieces .