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 šŸ˜‰

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. IĀ 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 (itĀ 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’ šŸ™‚

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 šŸ˜‰ And her solution to the public poo conundrum? The best EVER. Read it.

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Day 61: What about the *rest* of your health?

I don’t know about you, but I tend to spend so much time focusing on my UC that I forget that I have whole other systems and body parts that also need a little attention! I think it’s easy to fall into that trap, because this disease is so difficult to ignore. It tends to hog the limelight and all the other niggles or discomforts are left to sulk in the corner.

Yesterday I went for my annual gynae check up. I’ve been doing it since I was 20, and it amazes me how many women don’t bother with thisĀ essential health check-up. Opinions differ as to how often you should have a pap smear – anywhere from yearly (if you’re at higher risk of cervical cancer) to every three years. You also need a pelvic exam and just a general once-over by someone who can immediately pick up if anything is wrong.

When I saw my doctor yesterday, it was the first time since my UC diagnosis, and I was thrilled to discover that not only does he know a lot about the disease, but he’s in complete agreement with me about diet. He actually said in his super chilled-out way, ‘Ja, but it’sĀ obvious‘ when I mentioned having to make dietary changes despite my physician thinking it unnecessary. He said I look very healthy and that the diet is fine for me to be on.

Interestingly, he also said that supplements (excluding probiotics) are a waste of time and money and he wouldn’t bother. His point was that if your body isn’t absorbing certain things from your food, it’s not going to absorb it from a pill either. That really does make complete sense.

So anyway, I feel great after seeing him, but it did make me think about how we tend to neglect other aspects of our health when we’re so focused on our gastrointestinal system.

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I’ve discovered that IBD patients may be at increased risk of infection, especially when flaring. I know how easy it is to brush aside an irritating cough or a runny nose because I’ve dealt with much worse, but ignoring the small niggles can lead to bigger problems – and when your immune system is compromised, there’s always a higher risk of flares.

As with most other aspects of this disease, we seldom have all the answers, and most of us are just trying to create our own, customised road-maps to the holy grail of better health for longer periods of time. I am no doctor, but it seems logical to me that if your overall health is good, there’s a better chance of your GI health being good too – and that if your general health is bad, it’s going to have a knock-on effect that could negatively affect your GI tract.

Anyone have any thoughts on this?

Day 60 and the BEST news from my doctor

First of all: WOO HOO!! 2/3 of the way through the 90-day SCD challenge, and I can’t believe how quickly it’s gone, and how relatively painless it’s been. TWO months. Holy crap! That means two months without chocolate, chips, junk food of ANY kind, regular restaurant food, fast food, cookies, CAKE, mom’s cooking, dad’s cooking,Ā anyone else’s cooking and CAKE. Did I mention CAKE?!?!?

I’m proud of this milestone and I’m pretty sure my body is grateful for it. While time-consuming at, and times, frustrating, it has been MUCH easier than I anticipated. This diet is hard, but it’s not even close to impossible.

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And now for the even better news

My UC prognosis is apparently great! A few months ago, I applied for dread disease cover, which basically pays out a lump sum if you are diagnosed with any dread diseases, like cancer, heart disease, and a whole whack of others. If you have a pre-existing condition, you may be excluded from cover for that disease (understandable), but ALSO, any other diseases that the insurersĀ think may arise as a result of your disease.

So, for those with UC or Crohn’s, colon cancer and other colon-related diseases are often excluded, because you’re at increased risk of these diseases anyway, and insurers won’t often cover you for them.

My insurance company contacted my physician to get a report on my UC. And, while I don’t know what he said, I do know that he must have a really positive outlook for my disease because the insurance has decided NOT to exclude me from any potential complications in the future. That must mean that my doctor doesn’t think I’m at a greatly increased risk of further complications down the line.

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I’m SO HAPPY about this. THRILLED! Of course I know I will continue to fight this disease for the rest of my life, but it’s under control now and I intend to keep it that way with diet, exercise and relatively healthy living. Knowing I’m in a good place now only makes me want to stay there – it’s the biggest motivation there is.

This path is easier for some, and much harder for others. I am so fortunate to not have needed surgery Ā or lengthy hospitalisations, but I also know how tenuous one’s health can be, especially when you have IBD. Treating your body with respect is the only way to keep it happy. I haven’t always done it and I don’t have it 100% right yet – not even close – but every day I’m trying, and I think that’s the most important thing. So cheers to SCD!

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Day 58: A careful introduction of cashews

Today I decided to introduce cashew nut butter to my diet. According to Elaine, you shouldn’t introduce anything nut-based into your diet until you’ve been symptom-free for 3 months. The last time I had UC symptoms was in November 2013, so that’s about 4 months, which is also why I introduced the almond nut yoghurt a few weeks ago.

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Do my ‘tummy bug’-type symptoms over the past 10 days classify as UC symptoms? I have no idea. I don’t include them in the 3 months, because I feel they were a once-off caused by a specific food that my body reacted to on two separate occasions. I could be wrong here but I’m learning as I go. Weigh in by all means!

Anyway, cashew nut butter is actually legal, according to Pecanbread.com, from phase 2. I had about a tablespoon (plus a sneaky extra teaspoon), and it was delicious! So far my stomach feels fine, but it was only about an hour ago.

My OhMega cashew butter. Pricey but worth it, plus it's just pure nuts

My OhMega cashew butter. Pricey but worth it, plus it’s just pure nuts

Quick aside: Length of time it takes for the gut to react to food

One thing I learnt through my awful-but-educational gastric reaction to the carpaccio is that my gut actually can take as long as 24 hours, or even more, to react to a food. I always thought I reacted pretty much straight away or not at all, but I certainly stand corrected. As much as I tried to deny it, I amĀ just like everyone else, and food can take up to 72 hours to cause a reaction in me – which is why each new thing needs to be tested over 3 days.

Why you need to be careful with cashews

On this diet, cashews can be a beneficial addition if you can handle them.Ā They’re full of protein, and theyĀ contain healthy fats which you may be lacking, especially at this stage of the diet. In fact, cashews are just incredibly healthy all round.

Well if this is true, everyone who flies on planes should be really, really happy

If this is true, anyone who travels by plane should be really, really happy

However, cashews and nuts in general can be a trigger for people with IBD, and they should be eaten with caution, especially if you’ve reacted to them before. You don’t want to make all this progress on SCD just to undo it with a couple of cashews.

The guys at SCDLifestyle.com refer to nuts as one of the ‘four dark horsemen’ of SCD, which are the four most common foods that they say cause the diet to not work for some people. The others are egg, dairy and fruit. Read more about them here.

Can you tolerate nuts? Are they helping your IBD or hurting it? I’ve always loved nuts but of course I can’t eat them in moderation, so that’s going to be (yet) another challenge…! And to end, here’s a great cashew milk/creamer recipe I’ve just found online. You could probably use it to make SCD yogurt as well.

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Day 51: Swallowing my own advice is a bitter pill

Today was a bleak day.

I was exhausted, due to the fact that I spent most of the night in the bathroom. Every time I drifted off, I was rudely awoken by a very angry colon. I don’t know how many times my diarrhoea woke me last night, but I do know I must’ve been pretty dehydrated today because no matter how much water I drank, I hardly needed to pee (a sure sign for me).

Just a few weeks ago I wrote about not anticipating flares, and just a few weeks before that, I wrote about staying calm when you think you’re flaring, and not to stress because stress makes it worse. But not only did I have an extremely stressful day at work today, but I also constantly fretted about the fact that I may be in the throes of a new flare. Well done Debby. Way to take your own advice.

Strangely, after my last BM at home this morning before work, my stomach hasn’t worked since. It hasn’t felt happy, but it also hasn’t gurgled and kicked the way it did all through the night last night. Plus, K has had the same thing. So……. maybe this is actually just a stomach bug? Maybe it’s a reaction to something we ate? Maybe I shouldn’t have eaten that raw meat? I mean, it only occurred to me today, but isn’t it actually too soon on this diet to be eating my meatĀ completely raw?

Needless to say, I haven’t added onion yet. I haven’t really changed much about my diet today, due to the fact that the diarrhoea hasn’t returned. However, I don’t necessarily believe that itĀ isn’t a flare. It could just be a coincidence that K has a runny tummy too. I’m giving it a few more days, and if it happens again, I’ll get in touch with my physician and get my ESR levels tested. That’ll tell me if I have inflammation, which will be an immediate sign.

In the mean time, I’m not introducing anything new, and I’m also avoiding acidic foods like tomato and coffee (is coffee acidic? Well you know what I mean). I’m also trying not to be tearful but it’s really hard. I spoke to my mom this evening and she told my quite sternly – and correctly – that there’s no point in worrying and that I have to stay positive. I know she’s absolutely right and I’m going to keep trying to do that.

Looks like food won this round

Looks like food won this round

Day 50 and my least favourite F-word

I had so much I wanted to write today. I wanted to tell you about all the awesome food I cooked and that I’d prepared some onions to try and how much fun our facemasks were and how I’m going to make almond milk tomorrow for a new batch of yoghurt.

But then 4pm happened, and brought with it a dreadfully familiar routine. Since then (5 hours ago), I’ve been in and out of the bathroom at least 6 times with diarrhoea (and tears of frustration), but I’m trying to stay positive. I’m hoping it’s simply the booze and the litre of yoghurt I consumed on Friday that’s caused this, and that’s it’s just a hiccup and it’ll be out of my system by tomorrow. But even as I type, I feel my tummy gurgling, and I can tell I’m going to have to jump up any second.

I just can’t. I want to crawl into my bed and stay there until this passes. More than anything, I don’t want this to be flare. And that’s exactly what it feels like. If it is… where to from here?

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Day 41: The worst thing you can do for UC

I’m sorry I skipped this post last night. We got home late from a gig at a bar in Hout Bay, and I was feeling yukky and tired.

The whole week I’ve been having cramps and discomfort in my stomach/colon, which means that for most of the day yesterday, I was stressing about whether I’m about to have another flare.Ā IĀ know how bad it is to stress about this.Ā You know it too. Why do we do it??

Selfie of me at the bar last night

Selfie of me at the bar last night

I kept trying to talk myself down but by the time we got to the bar last night, and my tight, gassy, noisy belly was making me long for my bed, I was convinced. This really is completely counterproductive and one of the worst things you can do for UC. Talk yourself OUT of flares, notĀ into them!

Exactly how it feels

Exactly how it feels

Luckily, we came home, I spent some QT in the loo, had a long hot shower, and felt loads better. It’s not in the least surprising that after the week I’d had, my belly would be unhappy. Add to that the fact that I ate a whole avo and a bunch of bananas (quite literally) before we went out, washed down with a glass or two of wine, and it isĀ freakin clear as day why there was a riot in my belly.

PRIDE!!!

Us at Pride 2013, showing our support for our US friends before Prop8 was overturned

Us at Pride 2013, showing our support for our US friends before Prop8 was overturned

Today I feel good. In fact, I feel GREAT because it’s Pride and we’re going to march in a few hours. I really think it’s so important that we celebrate our freedom in South Africa. And it’s not just freedom to be gay. In SA, we’re have complete freedom of choice (obviously as far as your human rights don’t infringe on anyone else’s) – which means that whatever your race, religion, favourite colour or food allergy, you’re free to live the way you want. That’s not to say that there isn’t discrimination. There is. Which is of course another huge reason to hit the streets today and make a noise!

Pride 2012

Pride 2012

I’m starting the day with eggs and coffee – my favourite, though it feels like I’m someone’s grandpa! – Ā and I’ve bought a ton of veg to cook tomorrow for the week.

How’s your weekend going?