Invisible Illness

My new lifelong frenemy… Crohn’s

A lot of people have been asking me where I’ve been… I usually help Bailey write his blog regularly as well as my own neglected blog here and of course I use social media. Over the past year there hasn’t been much blogging or uploading going on. There are several reasons for this. We are currently landlocked so Bailey is boat-less for the majority of the time, I also spent last year working hard on my Master’s Degree in Professional Writing and above all my health has been an issue. I’ve been dealing with everything and to be 100% honest, I’ve not felt like my normal upbeat self. I prefer to be a positive, optimistic person but over the past few months especially I’ve struggled. After years of pain and embarrassment I’ve now been diagnosed with a chronic illness. I have Crohn’s disease. It’s an inflammatory bowel disease or ‘IBD’ and there’s no cure.

Yep, I now come hand in hand with an inconsiderate little sidekick that stabs me in the gut every chance she gets. I say ‘she’ because honestly Crohn’s is the biggest bitch I’ve ever come across!

I’ve suffered with abdominal pain for years. The intensity and frequency of the other delightful symptoms (I’ll save the details of these for another day) have come and gone, but the pain has always been there. It became a sticking point between my fiancé and I when he would sigh and say ‘but you always feel ill’. It became embarrassing to always ‘feel funny’ and have a ‘bad tummy’ but I just got on with it. I don’t blame my fiancé for questioning my authenticity since I used to hide a lot of my other symptoms from him due to my own silly embarrassment. (Who really wants to tell their other half that they’re pooping blood and mucus?)

Last year my symptoms got so bad that I ended up visiting the hospital four times. I’ve spent the last ten years travelling which has also not helped pin down a diagnosis. Exasperated, I decided to get an intolerance test when I was at home in Cornwall last December. I was told to avoid several major food groups (more on this charlatan in a future post) and I started to feel much worse.

I went for proper allergy blood tests in Italy (I was tested for 16 different things) and my results showed I wasn’t allergic to anything. The doctor suggested I see a gastroenterologist. The gastro reassured me that I probably had IBS but he wanted to do some blood tests to be sure there wasn’t anything more serious to worry about… my results came back showing major signs of inflammation. My white blood cells were elevated and activated and my calprotectin levels were sky high. This was the moment I started to panic because unfortunately a lot of the symptoms for Crohn’s are very similar to colon cancer and along with my good friend Google I managed to scare the living daylights out of myself that I had the better known of the two diseases that begin with C.

I was referred for a colonoscopy and found it morbidly amusing that I was praying for a lifelong incurable illness because I was terrified of the alternative. As I chugged down the most disgusting meal of my life the night before the procedure I was ready for answers.

The colonoscopy went by in a blur. I was sedated and only remember the nurse joking with me that the drugs would either make me fluent in Italian or unable to mutter a single word. I don’t remember anything else about the procedure except a brief flash when they took one of the five biopsies. Then I came around in another room. There was still something stuck up my bum and I was extremely confused. At least the blue paper pants were extremely stylish!

I was so pale that the nurses made me stay for an hour after the procedure before they let me leave with my fiancé…It’s really not my best look!

I’ve been put onto three months of steroids four months before my wedding – not exactly the pre-wedding diet I had in mind and I’m halfway through the course now. Unfortunately they’ve not helped my pain but they have regulated my bowel movements. However, they come with lots of other nasty side effects that aren’t fun.

Next week I’m going in for a small bowel MRI, this will help my IBD team see the extent of my Crohn’s to decide how we are going to manage it long term. I’ve found a lot of comfort reading other people’s accounts of dealing with IBD’s and chronic illnesses and so I’ve decided to document my misadventures with my new frenemy. We’re at the beginning of our journey together so I’m sure there will be lots of ups and downs along the way.

Wishing you all Sandy Toes,

Lou x

20 thoughts on “My new lifelong frenemy… Crohn’s”

  1. I am so sorry to hear about the hard time health wise you have been having. Not fun in so many ways, and for the most part a hidden problem. I am sure you are having the love and support that you need. It’s brave and helpful for others that you will document your journey, sending all good wishes for a settling of symptoms. Love Jane and Tom x

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  2. Hi Lou read your blog with interest as my daughter too suffers with this horrible disease. Good luck with your journey, there will be good days too. Take care

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  3. So many new drugs and treatments these days—-hope that your docs are able to come up with a plan to help you manage this frenemy! Bailey, I’m sure, is offering all his love and purrs to help as well😏😻🐾 The dogs, of course, are likely clueless but equally concerned and hopefully offer a distraction🤔

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  4. That is a very tough disease. The young granddaughter of one of the members of my sailing club has a bad case of it. We always do a benefit sail race and dinner each season to support a charity so last year we decided to raise funds for the research into Chron’s and Colitis. We ended up donating over $3500cdn to Chron’s & Colitis Canada on behalf of Emma who has had way too many operations for a child. Best of luck with the fight!

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  5. My husband suffers with colitis & if I understand things correctly, colitis and crohn’s are both caused by acids. Has anyone suggested Boswellia, Turmeric, Vitamin D and B12 as being helpful for crohn’s?

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  7. My husband was diagnosed more than 45 years ago and most prescribed drugs do not help him.
    It’s an up down battle but know there will be better times.
    Sending prayers and purrs you find something that helps you feel better.

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  10. It can be very cathartic to share your thoughts and experiences. Your blog will be a good insight for those newly diagnosed. Xxx Hope your scan goes well.

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  11. Lou, sharing this is so powerful- I really admire you. Your account of this, is very truthful and explicit- so many people would not share this in the way you have- so proud of you sweetheart. Lots of love Jules xx

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  15. Pingback: Thank you dear furiends from Dexter and me! – Bailey Boat Cat

  16. Dear Lou, I can’t believe I missed this post, but it came while I was away at the BlogPaws Conference, so I am not surprised. My best friend (who died 20 years ago from malignant melanoma) had Crohn’s, and I know how badly she suffered. I would have hoped in the past 20 years that some new and better treatments would have been discovered, but it doesn’t sound like it. I will be praying every single day for you now that I am aware of this. Sending you lots of love and warm hugs, Kitties Blue Mom, Janet
    p.s. Congratulations on your and Jame’s marriage.

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  17. I’m so very sorry to hear that you have this awful disease! My prayers are abundant for you and your family. Take care….there must be good days ahead. Much love and concern from Central Ohio in the U.S.

    Sharon and Big Duff

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  18. Dear Louise I had NO idea what-so-ever you were unwell. And to find out you have IBD/Crohn’s just blows my mind. I have been having health issues & do have IBS & have wondered if it had ‘progressed’. But this is not about me. I am so sorry you’ve struggled for so long with the illness not knowing. And I’m sorry you have this ‘frenemy’ now for the rest of your life.
    I do want to congratulate you on your marriage!!! This is wonderful news! At least you know you have a GOOD man to stand beside you.
    Sending you white light of healing, prayers & lots of ❤ Sherri-Ellen & ***nose kissesss*** frum Siddhartha Henry xxxxx

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