Part 1: Diagnosing Crohn’s Disease – My Story

Until now, my blog and videos have been rather alopecia-centric. This is mostly due to the fact that my first ever YouTube video was a bit of a shocker – I revealed my AA bald patches in all their shiny, slimy glory and pledged to eradicate them with a new diet. Naturally, anybody with AA has chosen to follow me on this journey so I’ve tried to share my experience of this particular autoimmune disease in more detail. By following the Autoimmune Protocol I have reversed alopecia and seen incredible hair growth. Of course I am enthralled by this result, but it’s not the greatest achievement with the diet.

Reversing my inflammatory bowel disease, Crohn’s, is.

More than wishing my long locks would return, I have been motivated to uphold the protocol by a very desperate need to treat a far more rampant and debilitating illness. AA is by all means difficult; it’s a strain to hide, makes you feel unattractive, is almost impossible to control and takes a long time to recover from, but Crohn’s is serious. It can lead to surgery, colostomy bags and some nasty drug treatment. Many people spend half their lives at the hospital with this disease.

Before my diagnosis

Since I was 18 (I’m now 27) I have suffered with what was believed to be ‘Irritable Bowel Syndrome’. I was the person that would locate the toilet upon arrival, pop Imodium like it was candy and make 101 excuses why I couldn’t stay over. As I got older I overcame this nervousness and freely told people when I needed to poop (you just have to) but that’s not important to the story right now…

NYE
NYE 2013 – I can’t believe I actually drank this crap?!

I had all kinds of dietary tests taken; lactose, fructose and glucose breathalysers; coeliac blood tests etc. and they found nothing. Eventually I lost hope with the hospital and took matters into my own hands when I was 21. At this stage the bowel problems were bad. My morning commute to work was an hour of writhing about on the train as if possessed by a demonic spirit while I tried to hold in catastrophic diarrhoea. I suffered day in, day out, for almost a year. Then one evening as I did my usual search on the subject of IBS I came across a video of a woman who explained that for her whole life she had suffered with the same problem until at the age of 65 she removed gluten from her diet. As if by magic, she was cured. I cried so hard at this video, both with empathy and elation; I had to try it for myself.

It was my green light. I had my life back and there was no stopping me! With time I loosened the restriction on my diet to just wheat free as my past blood results did not prove I was coeliac and I even seemed to cope well with tiny bites of wheat here or there. I thought that was all there was to it, but over the past five or six years there’s always been something not quite right. I consistently struggled to cope with the aftermath of alcohol or coffee and every six months or so I would inexplicably become very constipated or thwarted by chronic diarrhoea. After a month or so it would subside and I would return to a relative state of normal. Is this starting to sound familiar? Like a ‘flare’? Yeah, if only I’d known…

156372_10150338404285277_8035323_n
Christmas 2010 in Toledo, Spain. I distinctly remember this as very bad time with chronic diarrhoea and I lost a lot of weight.

Warning signs

In November last year (2014), something went horribly wrong. It began with the area around my little toe, which suddenly swelled and made it painful to walk. I blamed my boots and instead wore trainers every day but the swelling worsened. The next thing I knew my entire ankle was swollen, it was red and purple and I actually could not walk unaided. I developed the most ridiculous limp to get around and the stiffness was so bad that I thought if I stood properly my ankle would snap in half. The pain was excruciating. I gulped back ibuprofen and rubbed Voltarol religiously just to make it through the day. After about 2 weeks the swelling lessened but as soon as I thought it was over, the knee in my other leg BALLOONED. I didn’t go to work that day and even on the following days I had to take a taxi because I couldn’t make it to the tube station on foot.

The inflammation progressed to the other knee and all while this was happening I became very constipated. It was time to see the doctor. On explanation of all my symptoms she prescribed me a whole bunch of laxatives for the constipation and sent me for blood tests to investigate gout. GOUT?! Are you kidding me?! Of course they came back negative and so this time I pushed her to test me for Rheumatoid Arthritis. All the while, the swelling was jumping from one joint to another. The bloods came back negative for RA and finally she referred me a rheumatologist at the hospital. He was brilliant.

We discussed my entire medical history, taking particular interest in my bowel problems and he concluded that I needed a colonoscopy. A colonoscopy that I had to wait six weeks for. In those six weeks my joint problems bizarrely disappeared and were replaced by chronic diarrhoea. That’s right, from constipation to diarrhoea. But this was no ordinary diarrhoea; it was accompanied by awful knife-like pains in my lower abdomen that would literally take my breath away. I constantly had to lie down with a hot water bottle and I would cry out in agony as they struck me so suddenly. Many mornings I would wake utterly exhausted from a night of feverish sweats and severe discomfort.

Despite the fact that my jeans had become loose around my legs due to Crohn’s related weight loss, my lower abdomen was so distended that I couldn’t button-up my normal fitting jeans. I had to wear loose tops just so I could go to work with my trousers undone. That’s if I went to work. On the days that I did, I would either spend most of my time on the toilet or call it quits at 3pm and head home. I was in such a rotten way I often imagined I was dying of bowel cancer. I felt like a 90-year-old woman at the end of her road. The bathroom had become by sanctuary and I’d only leave it to fill up a hot water bottle to comfort my very inflamed tummy. I stopped hanging out with my friends so regularly, found excuses to go home or didn’t leave the house at all. Dating was a big NO. I wasn’t interested even in the slightest.

Colonoscopy

Finally the day arrived. Exhausted and fraught with worry, I was a mere shell of my former self. If you’d asked me how I felt about my alopecia I would have begged to be bald rather than experience another day of chronic pain. As I lay on the hospital bed, my hair flayed across the pillow and revealed my biggest bald patch. I just didn’t give a shit about alopecia anymore.

This motherf***er
This f***er.

The colonoscopy practically didn’t happen. As they entered my colon with the endoscope the doctors found that my bowel was severely obstructed. My colon (mid-sigmoid) was so inflamed they were unable to pass the camera through. They tried a smaller scope normally used on children and failed again. In order to view anything more, I needed a CT scan.

The Doctor’s report:

“There was inflammation in the rectum and sigmoid and a stricture in the mid-sigmoid colon. The stricture was impassable with a paediatric colonoscope. Biopsies showed no-specific chronic inflammation. CT revealed a short segment of circumferential thickening in the mid-sigmoid colon with upstream large bowel dilatation. The inflamed loop of sigmoid colon was tethered to a loop of small bowel and there was an enterocolic fistula. The endoscopic and imaging findings we felt to be consistent with Crohn’s.”

It turned out that all of the joint pain I experienced in the lead up to this flare was arthralgia – a symptom of Crohn’s disease, and given my history of bowel problems, it’s most likely I have been living with it for 9 years.

When the doctor spoke to me after my examination he prescribed an 8-week dose of prednisolone (steroids) to immediately decrease the inflammation and asked to see me again in 4 weeks, telling me nothing more than ‘we think you have an inflammatory bowel disease’. What he didn’t tell me at the time was they considered sending me for emergency surgery. This is where I’ll pick up from in the next chapter of my IBD story. If you’ve been following for a while you will have guessed it has a happy ending but my latest news is the icing on the cake… (Which I don’t eat, BTW.)

Feeling better but I think this is on-set of a steroid 'moon face'.
Feeling better after 4 weeks but I think this is onset of a steroid ‘moon face’.

Click here to read >>chapter 2<<! If you’re not already following, please subscribe  🙂

Big love ❤

Stella

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