Hannah
First let me begin by saying, this is not intended to be a ‘drugs don’t work’ rant, nor is it intended to be a tirade against the NHS. I feel extremely fortunate to live in a country that has a system where people in need are able to be treated regardless of their income or level of insurance.
Let me also clarify that I am not anti medicine, I have taken antibiotics, I have had paracetamol, I have had local and general anaesthetics etc. What I am against is the chronic use of medicine and taking medication for conditions where its efficacy is questionable. I am not saying that medication for IBD doesn’t work at all. After all, I haven’t taken any for my UC. My comments and decisions about how to treat my UC are based purely on my own experiences and reactions - the kind of feedback that as an individual living with the condition I just cannot ignore.
Over the past few months I have spoken to countless people with IBD and listened to some of the horrors they have endured / experienced over the years whilst on medications that are intended to minimise symptoms, maintain remission, and avoid flare- ups; ultimately to help one live a ’normal’ life. What I was most struck by with all of these conversations was that current drug therapy is simply not doing the trick. Not only is it not doing the trick, it is also causing serious harm and additional suffering, both the higher short term doses of medication and the lifelong, daily use of lower doses or ‘weaker’ medicines. Many of the individuals I have spoken to take a cocktail of pills on a daily basis and have done so for years. What is also scary is the amount of medication being taken to counter side effects of other medications, as far as I am concerned the very fact that individuals are back in hospital having had massive flare-ups, undergoing gall bladder removal, suffering with jaundice, you name it I’ve heard it all, is a clear sign that current treatments are simply not working well enough or in some cases, at all. It astounds me that the majority seem to continue obediently taking everything from the very first pill they were prescribed. Have any of the individuals I’ve spoken to had what they would consider ‘normality’ since their diagnosis - no... and for an invisible disease they all look remarkably unwell. If this is the advert for mainstream treatment, then I sure as hell want the alternative!
Diagnosis
I first visited my GP at the beginning of January (2018) as I noticed that I was passing blood in my stool. It was not until the end of April that I had a sigmoidoscopy to see what was going on. All the while my symptoms were getting worse. I needed the toilet more frequently, 10 - 15 times a day or more, with no ability to control it meaning I had to be near a bathroom to avoid potential disasters. I was passing increased amounts of blood and mucus, had stomach pain and severe back pain. My eyes were tired and sore, and my sight wasn’t clear. I had drenching night sweats which were so bad it looked and felt like I had just stepped out of a shower. My body ached all over. I woke up every morning feeling like I needed to go back to sleep; by midday I felt genuinely too tired to function - I was chronically tired. I constantly felt I was coming down with some kind of flu. I felt very depressed and anxious.
Ulcerative Colitis was confirmed by my gastroenterologist at the end of June 2018. When I came out of the consulting room having received my diagnosis, I realised why diet isn’t considered by many IBD sufferers and why medication is accepted. The pressure to start taking pills is huge. During my consultation the whole weight of the NHS nearly crushed me. In the space of twenty minutes I was told that UC is a chronic incurable disorder which increases risk of bowel and colon cancer – I needed to take medication straightaway. But with medication there were severe possible side-effects including pancreatitis, kidney and liver damage. I had visions of being in a hospital bed hooked up to machines being pumped full of god knows what, with bits of my digestive system being removed until there was hardly anything left! I wasn’t just scared, I was absolutely petrified at the image of my future. If I was being perfectly honest I would tell you that after that consultation I cried for at least the first 30minutes totally overwhelmed by the entire thing. I was ‘fine’ a few months earlier, yet now I had a chronic disease and an uncertain and scary future.
After composing myself a wave of anger washed over me, in fact, I felt rage. Rage that my questions on diet were utterly disregarded. Rage that a dietician was an ‘optional extra’ which I could pay for privately if I wanted to, but really other than “avoiding spicy food”, there was very little point in going the dietary. Rage that I was directed to take toxic and harmful substances every day for the rest of my life, and rage at the lack of bedside manner in which everything was presented to me. The only comment which I agreed with the consultant on, was that until I felt better, I wouldn’t realise how unwell I had been, and that was the case. When I changed my diet I realised the extent of the EIMs I had been suffering with, and that my UC had been causing problems far longer than I had realised.
What I had not told the consultant was that three weeks prior to receiving my diagnosis I had taken it upon myself to radically change my diet. I did this because every time I ate I felt extremely ill. I realised that when I consumed certain foods or drinks, I would have (in many cases) an immediate and urgent negative reaction; other things I tried my reaction was less severe or there was no reaction. When I cut out the foods which negatively affected me my symptoms were reduced or entirely alleviated; so the suggestion from a healthcare professional that subtracting these foods made no difference was something I considered to be pure 'anti-logic’. It was knowledge about how much my new diet had helped me, compared with what I was being told that enraged me the most and gave me the strength to not take medication. What I had been able to do, without any medication, was reduce my symptoms by 70-80% within the first 24-hours. Symptoms which had been getting worse by the day and showing no sign of remission.
I am meant to be taking 6x800mg doses of Mesalazine per day, every day for the rest of my life. Given the stark warnings, ‘possible inflammation of the pancreas, inflammation of the liver and kidney problems’, I’m concerned why diet wouldn’t be the initial port of call or at least an integral part of the treatment of conditions like UC. Knowing how diet helped in such a short space of time is the main reason why I set up www.crohnscolitisnutrition.com.
I have spoken to many individuals with IBD and am always surprised how little dietary knowledge they seem to have, and how little diet has been considered as part of their ongoing treatment. Some of the individuals I spoke to were quite adamant that diet was useless because they 'had already tried', Upon further conversation it was quite clear that our definitions of 'trying' were remarkably different. I largely place the blame for this on the medication/surgery centric approach to treating and managing IBD.
I approached my diet as if I had a serious allergy. If a person is allergic to peanuts even a tiny trace in what they eat can kill them. This is the kind of attitude an IBD sufferer needs to have if they are going to seriously try diet. A forensic approach. It is not enough to mostly or half-heartedly follow a diet, that is not trying and won’t work.
The idea of which foods are generally considered ‘healthy’ needs to be ignored - if something makes you sick it needs to be eliminated from your diet. Since being diagnosed with UC I have met people whose lives have been utterly devastated by their condition - I didn’t want that for me, I wanted to get my life back.
Diet
When researching information about diet and IBD, I found that the majority of sites were focused on medications and surgeries. The dietary advice was usually a few lines on what to avoid to help alleviate symptoms; perhaps details of diets to look at such as the low-residue (fibre) diet, specific carbohydrate diet or FODMAPCD. Some sites had no mention of diet whatsoever.
There are some sites which focus a little more on diet but I found they pushed silver-bullet products -probiotics, matcha powder, kefir, ginka-root (I may have made that last one up but you surely get the idea). This raises alarm bells as to the quality of the information - do they just want to sell a product. Fortunately, I am extremely lucky to be around great dietary information sources - it is my new diet that has allowed me to have what I would consider a pretty normally life since diagnosis.
I feel incredibly strongly about the need to share this information. The diet can sometimes feel limiting or be difficult to follow at times but in my opinion it is the best way to deal with IBD.
Let me tell you, I have an absolute love of good food and would never have considered myself the kind of individual that only eats out of ‘food is fuel’ necessity. As far as I’m concerned food is a pleasure - trying different dishes, cooking new things, watching cooking programmes, eating out and so on. This was the first time in my life that I would need to think about food in a completely different way and the diet I began with felt pretty severe.
The first week on my new diet:
Ingredients: Spinach, Eggs, Butter, Fish, Rice Cakes, (Honey - small amount only in tea - honey removed after 1st day) salt (no pepper)
Drinks: Still or Sparkling water, Black Tea (switched to decaf only, on the 3rd day and I tried only bottled still water in the second week to see if there was any notable difference, I also stopped sparkling water for a few days but that made no difference. Am fine with tap or bottled water, still & sparkling)
Supplements: - Probiotic & Turmeric
Saturday
Breakfast - 2 eggs scrambled with butter, black tea (this was changed to decaf tea on day 3 and I have stuck with that ever since)
Mid morn - Spinach (cooked) , 4 rice cakes
(late) Lunch - 2 eggs scrambled, spinach (cooked), smoked Mackerel, plain white rice, 2 rice cakes
Supper - 1 boiled egg, smoked salmon, spinach (cooked) , plain rice
Snack - 2 rice cakes with very tiny amount of honey (I cut out the honey after this)
Sunday
Breakfast (late) - 2 Egg & Spinach omelette, 2 rice cakes with butter & black tea Lunch / snack - Rice Cakes w/ butter, Spinach (cooked)
Supper - Egg fried rice, Pan fried Salmon
Monday
Breakfast - 2 egg Spinach omelette, 2 rice cakes with butter & black tea (decaf)
Lunch - Egg fried rice, Pan fried Salmon
Supper - Rice Cakes, 2 Eggs, Spinach, Smoked Salmon Snack - 3 Rice Cakes
Tuesday
Breakfast - 2 egg Spinach omelette, 2 rice cakes with butter with black tea (decaf) smoked salmon
Lunch - Egg fried rice, Pan fried Salmon
Snack - 5 Rice Cakes
Supper - 3 Rice Cakes, 2 Egg, Spinach, Smoked Salmon
Drinks - ‘Stomach ease’ (herbal tea) - made my stomach hurt so didn’t have that again.
Wednesday
Breakfast - 4 rice cakes, 2 scrambled eggs
Lunch - Egg fried rice, rice cakes
Supper - Rice with spinach & butter, 2 scrambled Egg, pan fried Salmon.
Thursday
Breakfast - 3 Rice cakes, Smoked Salmon
Lunch- 4 rice cakes & butter, 3 soft boiled eggs
Supper - Rice with spinach & butter, 2 scrambled Egg, pan fried Salmon.
Friday
Breakfast - 4 Rice cakes, 2 egg Spinach Omelette
Lunch- 4 rice cakes & butter, 3 soft boiled eggs
Supper - Rice with spinach & butter, 2 scrambled Egg, pan fried Salmon.
Notes:
• Being vegetarian all my life I had never eaten fish, so this was a big step for me. I added oily fish because the amount of carbohydrate I was eating was significantly reduced and I wanted some fat to make up the calorie deficit
* I really am not a great fan of cooked spinach – I only has small amounts of it.
• Anything which made my symptoms worse was removed - the beauty of this eating plan was that I was in complete control of what I ate based purely on food I could tolerate. Many IBD diets don’t seem to stress that fact, they still maintain the importance of getting ‘your 5-a-day’ or not cutting out whole food groups.
• Because I didn’t use medications, the feedback I got in the form of reduced or increased symptoms and EIMs was clearly down to what I ate rather than a side effect of a medication.
An interesting thing for me to find out whilst following this diet was that although I was brought up a vegetarian, when I introduced fish I had absolutely no negative reaction whatsoever from having it. Following this diet has opened up an entire food group for me which has done me absolutely no harm. I am forced to admit that it actually feels good to eat fish; no bloating and no fatigue, it just feels great in my gut.
I also found that I was able to eat larger amounts of food during the day because I wasn’t constantly running to the toilet, and I didn’t constantly feel sick. This was good as I had lost a bit of weight and really needed to put some back on.
I realised that if I was a vegan I would hardly be able to eat anything other than plain white rice and rice cakes - everything 'plant based’ (a very small amount of cooked spinach being the exception) messed me up badly.
Since starting the above, the things I am able to presently consume without any problems has increased considerably. I no longer take a probiotic, and I don’t take turmeric unless it is part of a curry spice (not spicy) mix which I use to flavour rice or the limited amount of vegetables I eat.
My change of diet has reduced my symptoms by 95%. I say that as a matter of fact. I am around nine months into it, so not very long, I don’t know what this ‘disease’ has in store for me, but since starting my diet I have been on long drives and sat in hours of traffic without a problem or associated anxiety; been on a plane for over four hours on four separate occasions without any symptoms. I have enjoyed days out, spent a few days in a campervan, been to a couple of house parties and a few dinners - I wasn’t drinking alcohol and I did occasionally curse the fact that I was unable to eat some delicious food on offer, but still, I have enjoyed a fruitful and social few months without feeling the effects of my condition. Surely this is what anyone with IBD wants, not to feel constantly unwell?
My long-term aim is to recover as much of my diet pre flare-up as possible, but if throughout that process I have to spend some time only eating meat and drinking bone broth then I’m quite sure that’s what I’ll do (even though as a vegetarian at heart, it is not a prospect I look forward to). The reality is that what our gut responds well to is devoid of morals, ethics, ideologies - so forget plant based, forget carnivore, forget keto, forget vegetarianism, etc., and be dictated to based only on what your gut can tolerate.
I would urge anyone and everyone to try diet to resolve their IBD, and when I say that I mean try it properly, because until you do you’ll have no idea how much it may benefit you.
Update: I had a colonoscopy in January this year (2019) something I was very apprehensive about. I wanted to see if the reduction in my symptoms was reflected in a healing or lessening of ulceration in my colon. To my great surprise the only thing that was found during the procedure was mild proctitis (without ulceration). I had hoped that the images would show some improvement but to actually see that startling level of difference without having used any medication was quite overwhelming - something I am extremely happy about and quite proud of.