Diet vs drugs: Why I’m sticking with my UC medication in 2015

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So let me begin with a disclaimer: I’m not a doctor (yada yada); I’m not any sort of medical professional (blah blah blah) and I speak only from my own layperson experiences (etc etc).

Today I saw my doctor for the first time in a year! Time was when I saw him monthly, before I was diagnosed with UC, and soon after, while I struggled to get my last flare under control.

Am I in remission?

Hard to say, says the doc. And for that reason, he doesn’t want to take me off my meds. I’ve been taking Asacol (800mg) twice a day for almost a year and a half. I have been fortunate in that I haven’t experienced any side effects that I’ve been aware of, although I know this isn’t true for everyone.

Asacol is a very small, very simple part of my life. I take it every morning and most nights. I say ‘most’ nights, because sometimes I forget (and I’m totally okay anyway). But doc says that coming off it completely may send me back into a flare, and considering I’m doing so well, I’m so healthy, and I’m experiencing no side effects, there’s no reason to come off it.

Medication vs. diet: What a year has taught me

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When I was first diagnosed with ulcerative colitis, I read loads and loads of blogs and forums and really anything the Google results returned. I found that many, many people were successfully treating their autoimmune diseases through diet, and I wanted in. I didn’t want to rely on medication, and so my healing diet journey began.

First up was SCD, and I believe it did great things for my body, flushing it of toxins and giving it a good long time to just recover. Essentially, I treated my gut like a baby’s, and that was exactly what it needed…

… but it wasn’t a permanent fix. Next up I tried autoimmune paleo for a while, and struggled with it (it was just too restrictive, so I kept cheating and bingeing, and then guilting myself and it was ALL TOO MUCH). Paleo was next, and that’s probably the diet I stick closest to now, although I’m certainly not strictly paleo.

I try to eat a high fat, mid protein, low carb diet. Basically, a healthy diet devoid of processed junk. I stick with it around 90% of the time, and I’m happy with that.

But that said.

I do not believe that diet alone could have helped me get my symptoms under control – because I tried; I did. I was terrified of going to the doctor when I was bleeding daily, severely – I didn’t want to know what was wrong with me, and anyway I was convinced it was cancer (aren’t we always? Thanks Dr Google). So I searched for holistic, natural cures for diarrhoea. I had a freezer crammed with blueberries, a fridge full of fresh ginger and cupboards creaking under the weight of white rice and salted crackers. I tried doing a completely ‘white’ diet – rice, bread, pasta, etc – and that helped for a while, until it didn’t any more. I tried avoiding fibre, but I was way too far gone for that. Then for a while, I lived on boiled eggs and basmati rice because it was all my tummy could handle.

None of it stopped the diarrhoea, at least for any significant period of time – and that of course is because I was in the midst of an aggressive flare, and I needed cortisone, and then long-term medication to manage it.

Asacol has changed my life. Throughout all my dietary experimentation of 2014 – and there was a lot of it – Asacol staved off flares and helped keep my system in check, even when I had cramps and discomfort and the occasional bout of OMG-it’s-another-flare panic.

I’m not saying that a dietary change can’t help some people – we’ve all seen piles and piles of evidence stating the opposite. But diet alone wasn’t the answer for me; medication has been.

Of course, that doesn’t mean I abuse my body. I don’t fill it with unhealthy rubbish just because Asacol is so good at keeping the junk from causing trouble. I try to stick to my healthy, clean eating as much as possible, and I won’t go back to grains, or too much dairy, because it places strain on my body that it simply does not need. I want to know, one day when I’m old, that I did everything I could to promote good health long into old age. As anyone with IBD knows, it can lead to many other horrible complications later in life.

For me, the answer so far has been meds first, diet second, but always focusing on eating healthily. I know this flies in the face of what many bloggers say, and as I reiterate, it’s simply my own experience.

If you’re flaring, if you’re very sick and you can’t get your symptoms under control, see a doctor. And if what you’re doing is working for you, that’s simply great.

Interesting note about dairy

Ba

   Basically exactly how it feels  

I’ve discovered fairly recently that I’m able to tolerate small to ‘mid’-sized amounts of dairy, despite being lactose intolerant.

There is a belief that if you’re intolerant to a certain type of food, and you cut it out completely for some time, your body begins to ‘recover’ and may be able to handle it in small quantities again. This has been my experience (this in particular I think is more due to diet than medication, but obviously the meds must help). I cut dairy out for about a year, so I think that gave my body some much-needed recovery time. But I don’t push it – after all, I’m still lactose intolerant, and overdoing it could be a contributing factor to flares, so I (mostly) take it nice and slow with foods that are very low in lactose.

Here’s to another flare-free year.

What to drink on SCD, paleo and AIP

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Don’t these look delicious?

It’s important to remember that what you drink on a healing diet can have as much effect on your body as the foods you eat, so you need to make wise choices.

On all of these diets, it’s highly recommended that you avoid alcohol, especially if you’re flaring. If you’ve been in remission for a while or you feel that your body can tolerate limited amounts of alcohol, there are specific types that you should stick to – these are discussed below.

Hot drinks

Coffee

Coffee is not allowed on strict AIP, though once you transition to paleo and your colon has started to heal, you may be able to tolerate it. During the early phases of SCD, it’s better to avoid coffee, but once you introduce it, make sure it’s weak, and made from pure coffee beans rather than processed (instant) grounds that could contain additives and preservatives. Also avoid decaf coffee, as you don’t know what chemicals have been used to remove the caffeine. Bear in mind that caffeine can irritate the gut, which is why it’s not recommended during the early phases of a healing diet.

Tea

Herbal tea is allowed, and if you don’t like the taste of them on their own, you can add honey, ginger, lemon, mint, berries, etc. Just make sure the tea you use is pure and free from additives. In summer, use it to make refreshing iced tea.

Using milk and sugar

On healing diets, added sugar is generally not allowed, so don’t put it in your hot drinks – use honey instead. Nut milks can be used, though for some people, myself included, this is quite an acquired taste!

Cold drinks

Carbonated drinks

Both regular and diet drinks MUST be avoided. These tend to irritate the gut, and they can also exacerbate bloating and discomfort. Plus, fizzy drinks contain a whole whack of unhealthy ingredients that are best avoided altogether.

Sparkling water

If you really struggle to kick the cola habit, as I did, try transitioning to soda water/sparkling water. I say ‘transitioning’, because I find that ALL fizzy drinks, sparkling water included, really cause me a lot of bloating and GI irritation, so it’s best I avoid them. However, I sometimes find that pure, carbonated water really hits the spot when I’m wanting something fizzy. Add lemon, berries or other fresh fruit for fun but totally healthy cocktail vibe.

Fruit juice

Fruit juice is okay if it’s completely natural/pure, and free of any preservatives and added sugar. Believe it or not, this can be VERY hard to find! Most fruit juices are marketed as being healthy, but they’re actually loaded with a whole bunch of crazy additives, never mind a ton of sugar. Be on the look out for organic, additive-free juice, or make your own at home. Apples and pears can be boiled until really soft and then strained, or you can use a juicer to make super healthy varieties like carrot, beetroot, apple, etc. The options are almost endless.

Smoothies

From here on out, you can pretty much assume that all store-bought/pre-packaged smoothies are going to be a no-no. Most contain things you won’t be able to eat on your diet, like dairy, sugar, additives/preservatives, etc. However, it’s really easy to make your own healthy, filling and totally ‘legal’ smoothies at home. Use bananas and any other fruit you can handle, and combine it with homemade yoghurt, a dash of honey and a scoop of protein powder. Here’s a great smoothie recipe packed with vitamin C. Smoothies also work brilliantly as meal replacements when you’re on the go.

Homemade drinks

If drink boredom starts to set in – and it probably will – get inventive! Make your own ginger ale, lemonade or ‘sodas’ at home using sparkling water and natural flavourants, like lemon, fresh fruits and herbs, and honey.

Alcohol

According to Theultimatepaleoguide.com, alcohol is considered a ‘processed’ food and a toxin – two things that we’re supposed to avoid on a healing diet. Plus, it’s well known that alcohol irritates the lining of the gut and can worsen the symptoms of IBD, especially if you’re flaring.

This is not a club you should be hanging out at

This is not a club you should be hanging out at

That said, I know how hard it is to go out and socialise like you did before – when all you want is to feel normal – and you have to order a glass of water, because even cooldrinks and juice are off-limits. And let’s face it, no one wants to be that guy in the bar ordering coffee.

If you’re NOT flaring and your doctor/nutritionalist thinks it’s okay for you to have a bit of alcohol, then there are options – just don’t overdo it! Try to choose those with as little sugar as possible (all alcohol contains sugar), and definitely avoid those considered grains (ie, beer).

Alcohol that is okay:

  • Dry red and white wine
  • Apple ciders (make sure they’re gluten free)
  • Certain spirits (like vodka, whiskey and gin. Because they’ve been distilled, they are mostly free of gluten. However, if you’re very sensitive to gluten, avoid them.)

Alcohol to avoid:

  • Any booze containing grains, yeast and/or high amounts of sugar
  • Sweet wine
  • Passover wine
  • Brandy
  • Beer
  • Cordials

Important note about water

Apart from whatever else you drink, try to consume at least 2l of water every day. If you aren’t used to doing this, it is difficult at first, but it gets easier. I drink 500ml every morning before I leave for work, and I keep a 1.5l bottle of water on my desk at work, which I always make sure I finish. That means by the time I get home, I’ve already had my 2l for the day, and any extra is just a ‘bonus’. This also means I don’t find myself drinking water until late into the evening – and getting up all through the night to pee!

18 GIFs that perfectly sum up how it feels to have IBD

The first time you have a bad flare and come out of the bathroom.

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How you feel when anyone suggests you should get checked out by a doctor.

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When you finally relent and see a doctor… and have to wait for all the test results to find out if you’re really dying.

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When you find out you’re not really dying.

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When your doctor tells you you’ll be on medication for the rest of your life but you don’t need to change your diet.

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When you decide to take a break from your doctor so you can see a nutritionalist for a second opinion.

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When your nutritionalist tells you to break up with gluten.

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When you decide to binge anyway, and your loved ones try to stop you.

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When you discover delicious, healthy food that’s good for your belly.

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When you start to feel better thanks to your new diet

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When you have the occasional dietary slip-up and it doesn’t turn into a binge.

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When your new diet, together with your meds, becomes a way of life, and you feel better than ever.

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When you realise that IBD doesn’t have to ruin your life and you can do all the things you used to do… even if it means less cake, cheese or booze. It’s all worth it.

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(…And when it’s your birthday and you treat yourself to cake anyway – because it’s worth it, once a year).

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Healing foods to eat if you can’t afford supplements

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Having a GI disorder like ulcerative colitis is expensive. There’s the traditional medical route and all it entails – doctors’ appointments, blood tests, colonoscopies, gastroscopies, specialist appointments, hospital stays and medication – and there’s the functional/natural medication route, with nutritionalists’ appointments, tests, supplements and special diets.

If you, like me, have been willing to try virtually anything to heal your gut, you’ve probably found that the damage to your bank balance can be pretty extensive.

When I started seeing a new nutritionalist about three or four months ago, I was pretty upfront with her about the fact that while I was willing to undergo any tests she thought necessary, and willing to try any supplements she recommended, there was a limit to my financial resources. In spirit I wanted to try everything she suggested… but in reality, my credit card cried out in pain. She completely understood and tailored a course of treatment for me that I was able to afford.

Using food as a supplement

She cut down my supplements to the bare minimum for me (Vitamin D, fish oil, a good probiotic and curcumin), and said that it was now up to me to use food to make up the deficit. Although it wouldn’t work as quickly as UltraInflamX, for example, it would work and it would help to reduce inflammation and repair the damage. This is, of course, the whole point of a healing diet, and these foods would form the foundation of it.

Here are the items she suggested I include in my diet as often as possible, preferably every day, to help fight inflammation and heal my gut.

  1. Avocado
  2. Olive oil
  3. Coconut and coconut oil
  4. Turmeric
  5. Healthy fats with all meals and snacks for anti-inflammatory support
  6. Homemade chicken or lamb stock/broth
  7. Peas – a good source of protein. Pea protein to be used in fruit smoothies and soups
  8. Fermented foods
  9. Animal protein
  10. Seeds

I made my first batch of sauerkraut recently and it was really easy. It tastes very ‘sour’ so I know it must be right! I include all the rest of the foods in my diet regularly, if not daily, except for the broth. I just haven’t got around to making it, which is a sorry excuse! I think what puts me off is that not only is it a long process, but we also have a small, poorly ventilated flat and I’m just not sure I want to subject K to those smells!

When it comes to spices like turmeric, you can easily add little bits to curries, soups or broths, which is what I do. As for the pea protein, make sure it’s well blended into your soup or smoothie so it isn’t ‘grainy’, and when it comes to animal protein, always choose meat that has nothing added to it – no preservatives, hormones, spices, sugar, etc. Be especially careful of bacon.

What healing foods do you consume regularly?

Allergic to… everything

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K jokes that I must be an alien because I’m allergic to practically everything on the planet. When I was a baby, I developed asthma. I was obviously still quite sickly because then the doctors figured out I was allergic to pets as well – and all the other regular allergen-inducing elements like grass, dust, house mites, pollen, people, walls, TV, water and being alive. Okay okay I’m exaggerating a bit, but I was a pretty allergic kid, and I continue to be a pretty allergic adult.

Often when I emerge from my (piping hot) showers, I’ll have a rash on my face, neck and upper body, a bit like itchy bites. If I swim in the sea, my body breaks out in tiny red dots from head to toe – tiny, raised red spots that take anything from thirty minutes to a couple of hours to disappear. Friends, unable to contain their amazement/mirth, have even photographed it.

When I visit my sister, she gives me an allergy tablet as soon as I arrive, because they have two dogs and within minutes I’m a sneezing, snotty mess. Right now, as I type this, I look like I’m deep in the throes of influenza – the kind you read about in Chaucerian tales, which wiped out thousands of people because of poor sanitation and rats and the fact that no one ever bathed (I swear I bath). My eyes are red and puffy and I have thick dark circles below them. I have no idea why this is – I simply started sneezing a few hours ago and haven’t stopped. I did open the windows of our apartment, and outside there are some trees, so it could be that. A cat could’ve walked past our front door. A cat could’ve thought about walking past our front door. It could be any one of a million things.

My research into autoimmune disease, and the time spent talking to nutritionalists, has made me realise that many people with IBD or other types of autoimmune diseases often display many allergies/intolerances, and also may exhibit symptoms of more than one autoimmune condition. For me, it’s asthma, eczema/psoriasis (mild and never properly diagnosed) and dry eyes – and of course ulcerative colitis. I’ve read many blogs posts by people who also have multiple autoimmune conditions so it seems to be pretty common. Oh and I’m lactose intolerant (and I’m sure I’m forgetting a few more as well).

I’m not trying to draw any conclusions  – you’ve got the Google doctors and scientists for that. I’m more just musing out loud. And wondering how the hell I’m going to get it together to look half-presentable for the show tonight. My favourite drag queen can’t see me looking like I’m coming off a 36-hour heroin binge.

Quick-fix solutions for puffy, panda eyes?? Eeeep!

5 things you need to do for success on AIP/SCD

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I’ve been more-or-less following the autoimmune paleo protocol for the past two months (more ‘more’ than ‘less’), and I’ve definitely noticed an improvement in my body. Most noticeably, I’m less bloated, I wheeze less, and my eczema/psoriasis seems to be less angry. I didn’t experience this level of improvement during my time on SCD, so I’ve given some thought to why AIP is working better for me than SCD did.

Bearing in mind that I embarked on SCD alone, and AIP with the guidance of a qualified nutritionalist, here are the five factors that I think are most critical to success on a healing diet.

1. Find out what’s going on in your gut

Yup, I’m talking about seeing a nutritionalist and getting the tests done. Yes, it costs a bit and yes, it’s icky doing those tests, but it’s worth it. Until you know what you’re actually trying to fix, how can you be sure you’re doing the right thing? For example, if you have yeast overgrowth but you’re continuing to include sugar in your diet, you’re not going to notice substantial improvement and you won’t derive maximum benefit from your diet.

For this step, you’ll need to visit a nutritionalist or a gut-health specialist. Surprisingly, I discovered that I don’t have any yeast issues, but I do have low stomach acid and lingering inflammation. We also found that there’s a big bad bacteria party going on in my gut, and hardly any good guys to balance them out. Each of these issues requires specific supplements, which work in conjunction with diet, exercise and medication to help bring my symptoms under control.

2. Cut out nightshades

It’s very, very difficult to do this, but I do believe it’s worth it. Some might say that a life without tomatoes (or potato chips) is no life at all… and it’s hard to argue with that. But a happy belly might. Although I’ve made lots of changes, I think this has been one of the most beneficial (for me. Loads of people have no issues with nightshades). I can say with certainty that when I eat spicy foods, my belly doesn’t thank me for it. On that note…

3. Listen to your belly pain (and all other aches too)

One of the most pervasive symptoms of IBD is pain. Stomach cramps, of course, but also joint pain and other aches and niggling pains throughout the body.

When you’re in a flare or in an untreated state, your stomach cramps are likely to be constant or at least fairly frequent. One of the great joys in healing is that this pain finally starts to abate. Which is why it’s so important to pay attention to stomach cramps when you’re on a healing diet. They indicate that your body is reacting badly to something you’ve put in it. Now that you’re healing, the amazing thing about this kind of pain is that it’s pinpointing something specific – that is, something you’ve ingested – rather than a general state of illness. It means that you can take action and cut that item out of your diet – either temporarily so you can re-test it later, or permanently. Always, always listen to your gut pain. If I eat dairy – bam, cramps. Same goes for spicy food or anything too rich.

By the same token, you should listen to the other pains too. They indicate that your condition is either improving or worsening. For me, one of the prime indicators of a flare is the terrible pain I get in my knees, ankles, feet and wrists. Now that I’m healing, the pain is less frequent and far less severe. However, the fact that I do still experience it tells me that my gut is yet far from healed.

4. Pay attention to visible indicators

People with autoimmune diseases tend to have more than one of them – lucky us! I have UC, but I also have eczema/psoriasis, dry eyes and many allergies. Monitoring these more visible, measurable symptoms of autoimmune disease are an amazing indicator of your overall health. Because they’re all linked to each other, when they improve, you can be fairly sure your gut is healing – and vice versa of course. Now that the angry, scaly red spots on my legs are healing, I feel confident that my gut is starting to heal (FYI: Spending time in the sun, which is something I rarely do, also helped to dry them up quite nicely. Use sunblock!).

5. Eat good fats but don’t overdo it

After meds and supplements, the most beneficial thing for an inflamed gut is healthy fats like avocado and coconut milk. Try to include these in every meal, but in moderation. I find that if I overdo them, I become extremely nauseous, and may be rewarded with cramps and diarrhoea. The same goes for nuts – again, I’m speaking for myself here. I can tolerate nuts in small quantities but if I overdo it, especially in combination with alcohol (come on, what’s better than nuts and wine?!), I can become quite violently ill. Too much of a good thing, right? 🙂 PS: speaking of alcohol, it’s actually prohibited on AIP, but if you do choose to consume it, stick to dry wines only (nothing else is legal), and don’t overdo it, or this might happen.

As I say, these are the factors that seem to be working for me, but they’re different for everyone. What are your most important success factors for diet success?

Day 63: When you gotta go…

For most people, bathroom habits are intensely private and seldom discussed, which I suppose is ironic considering it’s one of the few things every human being has in common. It’s also why so many people with inflammatory bowel disease delay going to the doctor – and, like me, end up in hospital before finally being able to get a diagnosis.

The fact is, discussing what comes out, especially when it’s abnormal, is embarrassing for many of us. It’s also why we don’t like to talk about our illnesses. People often ask me, ‘But how did you know you were sick?’ or ‘How did you know you were lactose intolerant?’. I usually allude to it by saying, ‘Oh, I had terrible symptoms that you don’t really want to know about…’ but of course they do, and they ask! And you know what? We shouldn’t be embarrassed to talk about it! We didn’t ask for this disease, and we sure as shit didn’t ask for the symptoms. ‘Well, I started crapping blood every day,’ is, I suppose, the accurate answer. And when I give it, it really shuts people up 😉

Following on from this is the actual act of going to the toilet to do your business. For me, for most of my life, this was something that I only ever did at home. It was very private and I didn’t talk about it, unless there was a problem. In fact, I believe there’s a huge psychological component to it: My bowel would literally shut down when I was away from home. I remember going on overseas trips in my early 20s and going for a week or longer with zero activity – simply because I didn’t feel comfortable.

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I remember feeling so humiliated when, age 21 or so, my stomach was assailed by a Mexican feast, and I spent so long in the bathroom at my then-boyfriend’s apartment that he put a whole fresh pack of toilet paper outside the door as a joke. I always tried to avoid the dreaded ‘number 2′ at boyfriends’ houses – or anyone’s house for that matter. And public places? Forget it!

Even further back, I remember leaving for school in the morning, needing to ‘go’, and thinking, ‘Now it’s going to have to wait until I’m home again.’ And it did.

Of course, all of that largely changed when I developed UC. Suddenly, despite the power of my subconscious, my ‘second brain’ managed to overcome it to a significant degree. I had no choice but to answer the call when the flares knocked (and knocked and knocked) – no matter where I was. The worst place was my sister’s wedding – right there at the reception, in my gorgeous bridesmaid’s dress. That was my first flare in fact.

Sometimes you just gotta go right there in the street, in a wedding dress. Also, watch Bridesmaids #Best

Sometimes you just gotta go right there in the street, in a wedding dress. Also, watch Bridesmaids #Best

The flip side of this has been a conscious effort to try to go whenever I feel the urge – wherever I may be. I’ve come to learn just how unhealthy it is to hold it in, especially when you have an already damaged gut. I loved this post by gutwrenchingtruthaboutcrohns called ‘Pooping in public… and adults with no sensors‘, and now it always pops into my head when I’m in the bathroom at work and I just gotta…

Luckily I haven’t encountered any rude people (and of course we all like to think that leave hardly a trace behind us), but I do think that ‘going’ in a public place is difficult for many people – especially girls, and especially anyone who, like me, has an intense germ phobia about public toilets! Hovering when you pee is a fairy easy skill to master. Hovering when you have a flare takes significantly more practice!

Interestingly, during the worst of my flares last year, I’d go to the toilet several times in the morning while I worked from home, and innumerable times during the night, disturbing my sleep. However, no matter how severe the flare, my BMs mostly (not completely) held off during the four or so hours that I taught at a school each day. I walked there every day – half an hour each way – and then taught for about 3 or 4 hours. And apart from the odd occasion, my colon usually played nice while I was in front of my class. Or maybe my lessons were just so boring it fell asleep (it had been up all night after all).

Just what every IBD sufferer needs. K, pay attention #Chrismukkah #Presents #Multitasking #Productivity

Just what every IBD sufferer needs. K, pay attention #Chrismukkah #Presents #Multitasking #Productivity

So that always felt to me like the psychological component creeping back in. Obviously it’s impossible to completely control a serious digestive disease with one’s mind (unless you’re Dynamo or David Blaine maybe). But, speaking only for myself, I know there’s a huge brain connection and so healing myself is as much a psychological journey as it is a physical one.

It also means that when I go to the theatre with my mom, like I did tonight, and I’m in the queue for the toilet with a gaggle of well-preened older ladies, I just have to bite the bullet and do my shiz, no matter how inconvenient it may be. Because if I don’t (and sometimes, even if I do – like tonight), I have to sit through a 2-hour production with unbuttoned pants and audible fireworks in my belly while the bloat monsters play basketball in my stomach.

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I don’t know why it happened tonight but after I came home and enjoyed some QT with my loo, I felt a million times better. It makes me think it’s something I ate (I promise I only had a few bananas today), and that it could actually maybe (sigh) be the cauliflower. Investigations ongoing.

The point of all this is that going to the toilet is the most basic of human activities; the one thing we all have in common; and that when you need to do it, just do it. Holding it in is never healthy – and as we all know, ‘better out than in’ 🙂

While searching for images for this post, I came across this hilarious piece entitled A lady’s guide to pooping in public. I highly recommend you give it a read – perhaps when next you’re spending 5 minutes in the loo 😉 And her solution to the public poo conundrum? The best EVER. Read it.