My Crohn's Story
...and the things I've learned so far (including the aloe tonic i'm obsessed with).
I’ve been MIA a little bit lately because I’ve been going through some health issues. Hello FORTIES!
I’ve been getting a LOT of questions about my recent diagnosis, so I thought I should cover what I’ve learnt so far here in case it’s helpful to you, or someone you know.
I’d never even heard of Crohn’s until recently, but everyone I speak to seems to know someone with it, and knowledge builds knowledge so here we are.
First a little back story about my health history, and I also feel it’s worth mentioning that we Brits are very much “keep calm and carry on”, which I can only assume is the reason why I didn’t get diagnosed until age 42 while everyone else seems to get diagnosed with it in their teens.
I started having REALLY terrible gut issues when I was in my early 20s. I remember it well because I had recently moved to London, and there was a group of us who would often get together for Sunday lunches at each other’s houses or in a gastropub somewhere quaint, and I would frequently have to leave early so that I could go home and lay on the floor rolling around in pain. Leaving parties early was basically my thing. It literally never even occurred to me that it was something I should go and see the doctor about. I just thought it was the way I was.
I got through my 20s and 30s believing I had a severe dairy intolerance. If I would have a flare up (which was often), I always just assumed I must have unknowingly eaten dairy and that I just needed to try harder.
Fast forward to 3 years ago, I started to experience the most EXTREME fatigue I had ever experienced in my life. We were a few months into the covid debacle and I sought out a doctor who’s reviews for helping people with fatigue were absolutely outstanding, so I trusted that he must be the one who could help me. When I sat down in his office, I said to him “please help me. I feel like I’m living in the body of a 90 year old woman. I feel so fatigued that I feel like I could just lay down and die”. He proceeded to run a bunch of blood tests, and told me that he knew exactly how to help me. He sold me $1000 worth of supplements (yes, you did read that right!), and told me to come back every other week for alternating treatments of laser blood therapy and oxygen therapy. I followed his instructions for a few months, but soon started to realize that we were barking up the wrong tree because I certainly wasn’t experiencing anywhere close to the “life changing” experiences his other patients were claiming.
So I left it for a while, and then in 2021 I found another doctor who had a completely different set of credentials and he told me that my platelets were alarmingly high, and that he wanted to book me in for a bone marrow biopsy so that we could create a more informed plan of action. This bone marrow biopsy was going to cost me $4000 in COPAY! (For those of you in the UK, a copay is the equivalent to an “excess” on an insurance policy). I decided to wait it out until the following year, when I hoped to get myself a better insurance policy. January 2022 came and went, and something deep down told me that the bone marrow biopsy was in fact barking up the wrong tree again. So I never returned that doctor's call. All throughout 2022 I had been eating SUPER carefully (or at least so I thought). Anytime I would experience symptoms, I would assume I must’ve eaten something that didn’t agree with me. I would try harder to eat cleaner, but the cleaner I ate, the worse my symptoms got.
It just wasn’t making any sense. Nothing added up. How could it possibly be that the healthier I ate, the worse my symptoms seemed to get? At the beginning of 2023, I saw an oncologist, who wanted to treat me with a cancer drug to plateau the rapidly rising platelets. She told me to come back in 6 months to see if they were still rising and to start treatment. We’ll park the platelets here for a moment… By the end of April 2023 I literally thought I was bleeding to death - from my gut. I called my primary care doctor and described what I was experiencing and she told me to go immediately to the emergency room. I told her “I’m not the kind of gal who goes to the emergency room. Are we sure about this?”. To which she responded “if you do not go immediately to the emergency room, you are AMA” (Against Medical Advice). I put the phone down and decided she must surely be wrong. 3 hours later it had gotten so much worse that I knew she wasn’t wrong and drove myself straight to the emergency room. Exactly as I’d anticipated, they did not take me at all seriously. They took one look at me and I KNOW they were thinking “there’s no way there’s anything wrong with this gal”. They did a bunch of routine tests, told me everything was normal and sent me on my merry way.
4 days later I was so sick that I wasn’t even able to look after my 7 year old. Her dad was away on a work trip that week. She had to put herself to bed that night. In the morning I was so unwell that I physically couldn’t make her usual packed lunch and I asked her to grab a cafeteria lunch. We usually walk to school but I could barely stand up. I drove her around the block and through the valet drop-off line and then proceeded immediately back to the ER where I collapsed in the triage room. They wheeled me immediately through to a treatment room where I could neither sit up, nor tolerate the lights being on. My phone was over on the counter and I was too weak to even reach for it to tell someone where I was.
I was wheeled deliriously into a CT scan where they told me that they wanted to take out my appendix as a “precaution”. Now I'm no doctor, but I think we all know what appendicitis symptoms are and this certainly wasn’t that, so given the doctor’s lack of confidence in the matter, I politely declined and asked them to keep looking. After tests upon tests upon tests, they told me that the only thing left to do was a colonoscopy, for which I would have to wait several days for, due to the prep required. So I went home to wait. And to prep. The interesting thing was that the less I ate, the better I felt. Suddenly I started to realize that those nutters who do 4 day fasts might really be onto something!
The colonoscopy was unanimous. Crohn’s disease. The high fiber diet that I had spent my entire life believing would make me feel better, was in actual fact killing me softly. I’ve spent basically my entire life with a stomach ache, and now I finally had some answers. Finally a way to move forward, and a way to heal.
Now don’t get me wrong, eating clean and eating fiber ARE healthy. It just becomes a little more complex than that for those of us with Crohn’s and other inflammatory bowel diseases.
I’ll always have Crohn’s. There’s no cure for it. I’ll just either be in a flare, or I’ll be in remission. For right now, I’m taking medication to control a severe flare up, avoiding all high fiber foods, and of course all dairy. I’m drinking pure aloe vera every day (at my doctor’s advice), and I’ll share with you my new aloe obsession tonic below. I’m also taking Astragalus, which is a chinese herb known to enhance digestion, improve immune function, helps heal leaky gut as well as Hypothyroidism, Hashimotos, autoimmune diseases, colds, viruses and chronic inflammation.
I've been starting and ending my day with this tonic and I definitely notice a difference on the days when I forget to drink it. I've linked the aloe below, but note that you can find it much cheaper in places like Whole Foods.
I've only just started taking this so I can't tell you if it makes any difference, but it is apparently the number 1 prescribed Chinese herb so I'm very curious so see if I notice any difference with this one.
My platelets are now steadily decreasing, so it would certainly seem that my platelets had been rising all this time as an immune response to the severe inflammation in my gut. And the extreme fatigue was being caused by the fact that my body had been fighting so hard all this time. I’m so glad I listened to my gut (lol) and declined the bone marrow biopsy, the cancer drug, the appendix surgery, and I'm sure many other treatment offers that I've now forgotten about.
The moral of this story is don’t ignore your body. Extreme fatigue is not normal. Neither are frequent and debilitating stomach aches, severe and unexplained bloating, or bleeding from your butt. These are not symptoms that you should just tolerate and see if they pass. Advocate for yourself, and push for answers, so that you can learn what your body needs and how to heal.
Do you have Crohn’s too? If you do, I would love to hear from you and what treatments you have found to be the most helpful. Reach out to me here.
In pelvic floor health, Emma xo
