Yes, yes I know the photo is a little dramatic but hey, so am I! I actually used this image a few months ago for a blog post titled ‘Saying yes to medicine doesn’t mean failure’ and quite rightly, it doesn’t, but probably no more than a week later I deleted it from record.
To quote myself:
“I imagined I would write this post with a heavy heart, raising my hands and pleading guilty. In reality, I have come to terms with this latest development in my journey to better health and wish to share it with you to provide another perspective on how we may go about managing autoimmune disease.
I began this blog with a mission statement: Say no to modern medicine. Go it alone with diet.
I still stand strong in my belief that diet can achieve incredible results. It’s the best way to truly treat autoimmune disease at its root cause and not simply mask the symptoms in the way that modern medicine does so ruthlessly. However, in recent weeks I have learned that in some cases the two must go hand in hand. A funny little marriage of gentle natural wonder and brute force.”
In my last Crohn’s related blog post I gave you part 1 – diagnosing Crohn’s, which only took like 9 years?! I finished there with the discovery of a severe stricture in my mid-sigmoid and the prescription of an 8-week dose of prednisolone (steroids) to immediately decrease the inflammation. I was asked to return to the hospital in 4 weeks, told nothing more than ‘we think you have an inflammatory bowel disease’. What I wasn’t aware of was that they considered sending me for emergency surgery.
I was horrified at the thought of taking steroids. They totally destroy your natural gut flora (causing a leaky gut!) and are known to wreak all kinds of havoc with numerous side effects such as weight gain, mood swings, muscle weakness, stomach ulcers etc. Fortunately I experienced none of the bad, only the good. Four weeks into prednisolone I was feeling FANTASTIC. Literally, buzzing. I. LIKED. STEROIDS. However, to this day I still attribute the success of these drugs and the total absence of side effects to the simple fact that I totally altered my diet and habits from the day I began taking them. I immediately switched to a paleo diet and took probiotics every day to counteract the negatives effects of the steroids.
When I met with a doctor after 4 weeks (not my consultant) he advised me that I have Crohn’s and that I needed to begin a long-term intravenous drug treatment, Infliximab, which is an anti-TNF biologic that essentially suppresses the immune system. In doing so your body is left exposed to all kinds of infections that with a weak immune system you could struggle to fight. On top of that, Infliximab increases the risk of developing Lymphoma cancer. While it is proven to be effective at helping people to manage the symptoms of Crohn’s and does to some extent treat the root cause – an overactive immune system, it’s effects are not permanent and do not resolve the REAL root cause – what caused the overactive immune system in the first place.
Being the anti-drug hippy that I am, I went home from the hospital crying. The sound of this drug and its side effects were horrific to me. The very idea goes against every fibre of my being. After much deliberation I decided I would stick to using the Autoimmune Protocol to treat Crohn’s. I was doing so well with the steroids and the diet and I wasn’t prepared to give it up. I wanted to see what would happen once the steroids were finished.
I tapered off of them with 5mg less each week and finished the course seamlessly back in early July, continuing with the Autoimmune Protocol. It was as if the Crohn’s flare never happened. Not a single symptom remained and I felt better than ever. Feeling so pleased with the result I tried to contact the hospital to inform them that I wouldn’t be coming back to begin the Infliximab treatment but it was impossible to get through to them. I eventually informed a nurse and left it at that.
In September this year I was due a check up with my doctor to see how I was getting on with the Infliximab. Even though I wasn’t taking it I was excited to see him again because I felt I needed to prove that diet is the real answer. Sadly, he quickly wiped that smug grin off my face. He explained that yes he had heard of the paleo diet and the SCD diet and many of his patients ask if they can try these as an alternative to drugs and he encourages them to embrace this option. At this point I was excited, YES! Finally a doctor who knows! But then he gently informed me that I am not one of those patients, that my condition is too far gone to be helped with diet alone.
“But I’m fine!” I squealed.
“But you won’t be”. He replied.
In his opinion I was still feeling great from whatever was left over of the steroids in my system (this conversation happened 8 weeks after I finished them!!). He said that when they performed my colonoscopy months earlier they were prepared to send me for immediate surgery. In his own words: “the surgeons were literally sharpening their knives”. The stricture in my large intestine was so severely inflamed they couldn’t even push the endoscope (camera) through. Not even one used on children. Due to the risky location of the stricture (as well as a fistula) and the potential further complications it could entail, they opted instead for a high dosage of steroids.
As I mentioned in Part 1, I’ve had bowel problems since the age of 18, which has created a build up of scar tissue in my colon. Without a proper chance to heal I would be putting myself at risk of perforation and very likely multiple surgeries and an ostomy bag. Not treating Crohn’s is far more risky than any drug side effects. I know this to be true because I wouldn’t have found myself in such a state if it had been treated years ago when I was frequently misdiagnosed with IBS.
The doctor was so worried that I would say no to treatment this time that he brought in the consultant and a specialist IBD nurse to convince me. His fear was that one more flare up would be catastrophic and it just wasn’t worth the risk. Infliximab would keep this at bay and give my gut a good chance to repair.
How can you say no when three worried faces loom over you and your quality of life is threatened?
This crybaby wept again. I really thought I’d found the answer in diet and that I’d turned my back on the hospital for good. I thought I’d put this torturous decision behind me. I wanted to be able to say that I had treated myself with The Autoimmune Protocol and ONLY this. I then decided that to help me make this decision again I must find out what other AIPers were doing. I flicked through so many different blogs and found that actually, many of them ARE still under close treatment by their doctor and some are even using biologics!
I concluded that sometimes you really do have to work with both. The diet is still absolutely vital to improving symptoms and managing the condition long term. I believe it is what differentiates those patients who have to increase the medicine dosage or still undergo further surgeries from those who don’t, those who live much healthier lives. I wholeheartedly believed that if I were to maintain the Autoimmune Protocol while using Infliximab I would eventually be in great health and not find symptoms returning just before the next infusion, finally being allowed to discontinue treatment.
I gave in and had my first infusion, but the story doesn’t end there…
Before the first infusion I had a blood test to check for levels of inflammation. The results came back totally clear! I then answered their questionnaire about current symptoms and bowel movements which answered my case as ‘in remission’. I laughed to myself as they slid the needle into my bulging vein and turned on the pump. What the hell am I doing here then? A guy who was also having his regular infusion in the corner of the room had a feed tube in his nose and weighed about 8 kilos less than me. He looked sick; he needed this treatment. But me? Glowing skin and a smile on my face?
The first treatment was fine. No side effects, no reactions. I went back 2 weeks later for the second infusion and again it was totally fine, except for a few days later when I began to develop signs of an allergic reaction. It wasn’t obvious to me at first but I had a very sore throat with no signs of a cold or flu that might normally accompany one. Out of curiousity I had a flick through the Infliximab leaflet and sure enough found that a sore throat is a sign of an allergic reaction to the drug and can develop up to 2 weeks after treatment. I told my IBD nurse who was concerned by this; she asked me to keep a close eye on any other symptoms and to stay in touch. A few days after this I developed all kinds of weird allergic reactions to foods that were usually completely safe. I’d eat an avocado and end up not being able to breath very well, struck with back pain, stomach pain and nausea. Sometimes I seemed to not be able to breath out of nowhere, just like a panic attack.
I very quickly got an appointment with the hospital consultant, who after discussing my symptoms agreed he was uncomfortable with continuing Infliximab treatment, or any other drug for that matter, for fear of a severe allergic reaction. He then said the best thing ever.
Given that my recent blood results showed no inflammation and I had no Crohn’s symptoms, he wanted to perform another colonoscopy to see if I really had healed so well on the inside. This is what I had hoped for all along! A colonoscopy would finally put my mind at ease about any decision to take or not take drugs.
The result was incredible. The experience was completely painless this time round and the consultant was delighted to tell me that he was able to pass the endoscope and found no inflammation!! With such a good result, he concluded that I was free to go! No drugs! Just ‘keep up the good work and I’ll see you for a check-up in 6 months’. WHAAAAAAT! I was, and still am, the happiest girl alive!
So that’s my story! I’ll be sure to update you all to confirm progress in March but until then I hope it is all plain sailing with the AIP. Of course I am not completely ignorant to the fact that I’m not totally safe and free from Crohn’s. A number of factors could result in a flare – stress being the biggest now that I’ve eliminated dietary issues but if I try to keep things under control and believe in the power of positivity, I know I can manage this disease on my own.
As I said before, I’m not suggesting you go and quit your drugs tomorrow. Please, don’t do that. But if you can implement the autoimmune protocol and see a significant difference in your symptoms then maybe this is a conversation that you too can have with your doctor.
Here’s my latest video sharing the story I’ve just told you along with hair regrowth update at the end.
Do let me know if there’s anything you’d like me to discuss in future videos or blog posts. xx