IBD joint pain (and what you can do to ease it)

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Before I was diagnosed with UC, I visited a doctor and told him that I had severe diarrhoea and pain in my wrists and ankles. He must never have encountered IBD before, because he was stumped.

Of course, my more experienced doctors immediately put the two together, and since I’ve started treatment, the pain has mostly disappeared.

However, from time to time, I’ll get twangs in my knees – more niggles and annoyances than anything else, and I’m wondering if any other IBD sufferers experience the same thing? My GI issues are completely under control, but yet I still get these strange pains from time to time.

A few things that help are:

– Warming the area. Put a blanket over your knees or have a hot bath. Don’t worry if it makes you feel like a granny – it works!

– Avoiding tight pants/jeans. Maybe it’s a no-brainer or maybe it never occurred to you (it never occurred to me until I was like, “Duh!”), but wearing pants that put pressure on your knees can exacerbate the pain. More reason to wear tracksuit bottoms (yay!)

– Not sitting still for too long in the same position. Stretch your legs and walk around often, but don’t overdo the exercise (until the pain goes away).

– Not sitting with your legs crossed (a leg swung over your sore knee can make the pain worse).

– Adding more anti-inflammatory foods to your diet, like coconut oil, almonds, avocado, tumeric, blueberries, fatty fish, sweet potatoes, leafy greens and almost any other vegetable you can get your hands on.

– Taking a good quality fish oil supplement.

– Taking anti-inflammatories (if you MUST). Only when my pain became so bad that I couldn’t walk did I take anti-inflammatories, but it really did help and it gave me several hours of mobility that I wouldn’t have had otherwise. Always check with your doc, though.

What solutions/suggestions do you have for IBD-related joint pain?

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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

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   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.

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 98: What to eat (and what to avoid) when you’re having a ‘bad GI’ day

After everything my poor GI system went through last night with the nuts, it was still feeling very fragile today… and the legacy of the assault remained. I spent more time than I’d have liked to in the bathroom, but I didn’t panic, unlike the times before.

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There’ve been about three occasions on this diet when my stomach has reacted quite violently to something. The first few times I freaked out, thinking that it was a sure sign of a flare. Slowly I came to realise that a) sometimes your system just has an ‘off’ day, due to any number of factors from food to stress to hormonal imbalances or state of mind, and it doesn’t mean you’re flaring, and b) there’s no point stressing about potential flares – you’ll only make your symptoms worse.

Instead, it’s about eating (and drinking) right on those days to ease the symptoms instead of exacerbating them. Don’t ignore what your body is telling you, and if your GI system is out of whack, treat it delicately to help restore it to health.

What you should and shouldn’t eat when having a ‘bad GI day’

Let’s start with a list of foods to avoid:

  • Avoid foods high in fibre like fruit, nuts, high-fibre vegetables (beans, broccoli, carrots, cabbage, Brussels sprouts, etc) and lentils
  • Avoid dairy, as it can aggravate an inflamed gut
  • Avoid fruit juice (too much fibre) and carbonated drinks (can cause bloating)
  • Avoid nut butters
  • Avoid any foods to which you know you react badly
  • Avoid alcohol
  • Avoid any foods you have not yet introduced to your diet – now’s not the time to be adventurous.

What you should eat:

  • Bone broth soups, which help to restore the body, especially after a bout of diarrhoea. They’re highly nutritious and packed with vitamins
  • Herbal teas – add ginger to soothe your belly
  • Starchy vegetables like squash, pumpkin and butternut
  • Your ‘safe’ flare foods
  • Plenty of water – aim for 2 litres
  • BRAT foods – this works very effectively for some people (Banana, Rice, Applesauce, Toast)

While it’s frustrating cutting back on an already limited diet, it’s worth it for the day or two that you feel so, well, crappy. If you’ve been through your fair share of flares already, you’ve probably established a group of ‘safe’ flare foods. For me, it’s basmati rice (which I craved SOOO badly today but I wasn’t prepared to cheat so close to the end!) and eggs. I used to find that crackers were also very soothing, before I had to cut out gluten.

All things being equal, your bad bout should pass within about 24 hours, if it was just something that you ate. If it doesn’t abate or if you start bleeding, suffering from bad cramps, nausea, night sweats or joint pain, it might be a flare and you should contact your doctor ASAP to get it under control.

No.

No.

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.

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 this 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’s 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?