A Crohn’s Disease Catch-up

Scroll on by people if this isn’t your thing. I know, I will return to my normal pretty things tomorrow. πŸ˜‰ BUT seeing as I’m online a lot, I thought it’s only fair to sometimes keep it real! May is awareness month for Crohn’s and I’ve been asked to be the face this year. Soooo… I thought I’d give those who have Crohn’s or know someone with Crohn’s a little catch-up of where mine is up to. Without all the gory bits though ha!

Ok, so last year wasn’t my best year. I had 4 trips to hospital, plus a lip surgery thrown in there (a sun spot). Each time I felt it was getting harder and harder to recover from the general anesthetic. Then earlier this year I had another trip to hospital and had a bit of a collapse there which again took me a whole week to get over.

To give you a tiny bit of background… In 2003 I got an awkward fistula (I won’t upset you with all the yucky bits!) and that was a shock. Over the years and specifically last year, I now have 5 fistulas and 4 setons in place. I battle with these big time. I keep getting reoccurring sepsis as a result. This is a concern forΒ my doctors. There’s also some narrowing of my bowel, my habits have changed a bit and I’ve recently lost 10kgs without trying. I am heading back to hospital for a couple of days end of May to have another MRI, a colonoscopy and a few other bits. There’s no long-term plan or attack on how I can stop the fistulas or really manage them. I am just going along day by day. I am on Humira injections 40mg every week. My husband loves jabbing me in the belly! Ha.

Along with the obvious Crohn’s issues, I have terribly low iron (hence an infusion tomorrow), I have swollen knees/ankles/elbows intermittently. It’s not fun and it’s bloody boring whinging and complaining all the time. I LIVE on Panadol. I run a low grade fever most of the time (infection is always in my body) and my blood pressure drops quite often. I am always dehydrated and my hair keeps falling out. I am not a fan of steroids or antibiotics so I avoid them mostly.

BUT, it doesn’t stop me in my tracks very often. I usually break it down into bite size pieces. I rest when I need to. I cancel a day of activities if things are too much I say noΒ lots. But I also say yes to the things I love. I’ve had Crohn’s for 21 years and will have it forever, so I am not cancelling my life full stop.

I have friends and know of people with much much much worse symptoms than me. They are doing it really tough. The only reason I write about my Crohn’s is to just bring general attention and awareness to this invisible illness. Not for attention or sympathy, just simply to raise my hand and say I have this and so does 75,000 other Australians who also probably never talk about it.Β 96% of people with chronic medical conditions show no outward signs of their illness. This is me. You too?? But I am ok, truly, I am ok with it all.

Just a ramble and a chat today.Β β™₯ KC.

March 31, 2017

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23 Comments

  1. Reply

    Val

    March 30, 2017

    Katrina you are so inspiring You achieve so much despite your medical problems Hats off to you
    I love your blog and love reading about the wonderful family life you have created with your husband Thank you for sharing as it is too easy to just share the good times It makes it more real when the hard parts of life aren’t hidden away Other people with Chrohns will no doubt benefit from your candid sharing as well Keep doing the things you love!

  2. Reply

    Biddy Sohier

    March 29, 2017

    Thanks for your update, im sitting out at lake albert coffee in hand as I read it.
    Would love to be walking around it today but body says no.
    Wishing you all the best.

  3. Reply

    Megan Jackson

    March 29, 2017

    Wow! I didn’t realize the severity of this disease. I hope this year sees some relief for you. Thanks for sharing and educating us a bit more

  4. Reply

    Jenni Eyles

    March 29, 2017

    Bravo for sharing…you just never know who you help by doing so xx

  5. Reply

    Gai Ford

    March 29, 2017

    Thank you Katrina for sharing your story as it helps people to understand Crohn’s Disease.

  6. Reply

    Lisa Wood

    March 29, 2017

    ❀️ to you x

  7. Reply

    Candice Beever

    March 29, 2017

    Crohn’s is such a horrible and debilitating disease- and because it’s an invisible disease it can make it so much harder to deal with. My husband has suffered from crohn’s for the last 9 years and last year after a routine colonoscopy ending with a perforated bowel he ended up in life saving emergency surgery where they removed the majority of his large bowel and a section of his small bowel and has now been left with a (almost definite) permanent stoma at 28 years old. It’s been a long and difficult road but hopefully with more awareness and education about the disease will bring more understanding.
    Wishing you all the best with your treatment and thank you for raising awareness xx

  8. Reply

    Melinda Drummond

    March 29, 2017

    ❀️ thanks for sharing

  9. Reply

    Kate Maynard

    March 29, 2017

    Wow you are such a strong woman my son has ulcerative colitis and got diagnosed 6 years ago and he has his ups and downs , but we all just try and stay positive you go girl

  10. Reply

    Jacki Ahchow

    March 30, 2017

    Sorry you are going through this Katrina – my son has an autoimmune condition and we don’t like steroids either

  11. Reply

    Christie Dunstan

    March 30, 2017

    My husband has Crohns, he is steroid dependent for life. The steroids have caused his bone density and liver to deteriorate. We appreciate others sharing their experiences and raising awareness.

  12. Reply

    Rebecca Hendricks

    March 30, 2017

    Most of us would crawl up in a ball and hide under the covers til the end of time with these symptoms. Hats off to you lady for doing all that you do. Thanks for the education xx

  13. Reply

    DinkyDi

    March 30, 2017

    I noticed in your previous pics you had lost weight yet again, a tell-tale that you have had some rough days, its such a roller coaster isn’t it, but thank you for raising more awareness..you rock girl!! I have had Crohn’s for 33 years out of my 51 and it teaches you never to take anything for granted, appreciate the good days and be grateful for lttle blessings…like finding the loo vacant πŸ™‚ xx

  14. Reply

    Emily

    March 30, 2017

    You are such an inspiration and you should be proud of how strong you are. It is hard having a chronic illness (I’ve had one for 24yrs) & especially, like you said, when you look “well” on the outside. I agree it doesn’t help to dwell on it but it is great that you are bringing attention to a disease that doesn’t get much attention. All the best for a healthy as possible 2017.

  15. Reply

    Jayde Cameron

    March 30, 2017

    What a great article luv!!
    It’s you, its your life and its your reality for both you and your family….yet despite all you suffer and all you go through and endure you still put that smile on your face and do such a great job to be the person you are. One that so many are inspired by and you should be very proud of yourself x

  16. Reply

    Maree Burden

    March 31, 2017

    Thank you again Katrina for explaining what it’s like to live with Crohn’s. It makes me more aware of not only Chrohn’s, but for those out there living with any other chronic disease.

  17. Reply

    Sarah

    March 31, 2017

    You are amazing for sharing such a personal story – they always help other people. I say if you can change one person’s life then it’s all worth it. My youngest daughter suffers from chronic inflammation, pain and immune issues as well as Juvenile Arthritis, and we have had great success through supporting her body with essential oils along with herbal methods, as she has become almost immune to antibiotics and pain killers, and I refuse to give her adult doses constantly. Please keep sharing your journey, it all helps xx

  18. Reply

    A-M

    March 31, 2017

    Oh my heart. I just love you. You are such an inspiration. A-M xx

  19. Reply

    Donna

    April 2, 2017

    Thank you for sharing. I have the less serious cousin-in-law IBS plus the really low iron. Which knocks me for six. You are an amazing woman who has created a great life even with the downs. Glad to be a reader.

  20. Reply

    Debbie

    April 4, 2017

    Thank you for sharing. I too have Crohn’s. I bowel resection and all good for six months, then it came back. Four years later have gone through the Humira , then the Infliximab and I am now on Vedolumizab infusions. Hang in there. I agree absolutely… no steroids. I have found Yoga helps, just the gentle stretching and breathing! You are truly an inspiration with all that you do. In fact you have inspired me to go back to uni and complete a diploma in interior design. I start in May and can’t wait. Crohn’s might be a part of our lives but it will never define us! The iron infusion was the best thing I did last year, you will notice a huge difference.

  21. Reply

    Linda

    April 25, 2017

    Thankyou for sharing . You are an inspiration. I love your blog. My friends 22year old daughter battles chrohns and I have witnessed some terrible episodes of illness and surgery in her life and like you she gets on with it not defined by her illness. The humira keeps it under control and she has been on it since under 18 years of age – usually not a treatment option at that age. She’s travelled around the world skydived from planes, experienced white water rafting and bungee jumped and met a wonderful young man in Africa now her boyfriend – he lives in England! She is second year at uni on her way to becoming a nurse., while holding down a job. … her illness unseen to others who dont know her, she is forced to take time out as infections etc arise. . We never know what we are capable of , illness certainly presents challenges to our dreams and goals. I have so much admiration for you and everyone who suffers ongoing illness who one way or another overcomes obstacles to reach goals and enrich the lives of those around them. Good luck with your upcoming treatments Katrina. I will continue to follow your journey and be inspired.

    • Reply

      Katrina

      April 25, 2017

      I am so happy to hear this. What a great role model she is herself! Best wishes to your family. X

  22. Reply

    Mary

    May 16, 2017

    Wow you are such a strong lady good luck x

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