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?

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!

How to tell if you’ve got a flare coming on (and what to do about it)

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A few days ago I woke up with an ominous ache in my foot, and my brain immediately went to dark places. Inexplicable pain in my feet and ankles, to the point of barely being able to walk, was a major feature of my most severe flare back in 2012. At the time I had no idea why my feet ached and I had diarrhoea, and my GP was unable to make the connection between the two (and no, my feet weren’t sore from constantly running to the toilet – after all, I spent enough time sitting!).

Anyway, I soon learnt that joint pain is part and parcel of autoimmune disease, and now that my UC is under control, I experience it infrequently, with just the occasional twinge in my knees.

The foot pain put me into a bit of a spin, but not in a bad way. Although I am listening even more closely to my body right now, I’m not freaking out about a possible flare. Instead, I’m actively putting measures in place to try to keep it at bay.

Aside from my regular medication, I’m placing an even greater emphasis on my diet and lifestyle, and here’s what I’m doing:

Ensuring that everything I eat is aimed at healing. That means no ‘empty’ treats that simply satisfy my taste buds but do nothing to enhance my health. I don’t need Bliss Balls or Nakd bars or 17 bananas a day. It means using food purely as a healing tool. I love to eat and I especially love sweet things so this is extremely hard, but necessary.

No.

No.

Eating foods that reduce inflammation. Every day, I consume avocado and coconut oil/milk/yoghurt – healthy fats that are known to help reduce inflammation. I also eat a small quantity of almonds (literally about 10 a day), plenty of fresh fruit and vegetables (at least 5 to 8 servings per day) and lean meat and fish. I’m big into baby spinach right now – I eat it raw or pour boiling water over it to cook it instantly – and try to include turmeric in my diet. Here’s my easy recipe for homemade SCD/paleo coconut yoghurt.

No.

No.

Cutting out alcohol. Alcohol is extremely inflammatory and the fact that I ever drink it at all is a gamble. Right now, I don’t feel like betting on my health, so the booze is gone. I’m not even sad about this; I’m too focused on healing.

Reducing coffee intake. Okay, this is very hard. When the only things you drink are coffee and water, removing 50% of your beverage options is a bitter pill. At the moment, I’m still consuming one to two cups a day, but I’m trying to reduce this to just one cup, and hopefully I’ll be able to cut it out altogether within the next few days. I really hate tea.

Choosing healthy snacks. If I do get hungry between meals, I ensure that the snacks I eat are serving me, not simply filling a gap. Don’t get me wrong – I don’t go hungry. It’s just that I won’t chuck something into my stomach for the sake of taste or plugging a hole. If I’m going to eat it, it’s going to need to fill me and fulfil a healing function. I also drink UltraInflamX once a day to load up extra vitamins and tumeric.

No.

No.

Avoiding problem foods. For me, this means no nightshades (which I’ve been doing anyway), and strictly limiting my consumption of nuts and raw vegetables, as both can be hard to digest.

NO.

No.

Not overloading my gut. I’m a big eater so this has always been my greatest challenge. But overloading my GI system, whether I’m eating healthily or not, is putting it under unnecessary strain that can only lead to damage or at the very least, discomfort. I’m not a believer in eating 6 or 9 or 73 small meals a day. Honestly, that is just not satisfying to me. I love a hearty, filling dinner, and I can go smaller on the other meals. But even that hearty, filling dinner needs to be a reasonably sized portion or my gut simply won’t cope.

Definitely no.

Definitely NO.

Drinking lots and lots of water. I already drink 2 litres a day so I can’t fit much more in without spending every free moment in the loo (one way and another, I can’t seem to get away from that place).

Getting enough sleep. I generally get between 7 and 8 hours a night and I don’t usually have any trouble sleeping, so this is one of the few things that isn’t a problem for me!

Reducing stress. I’m a highly-strung person by nature. I’m impatient, easily frustrated and quickly angered. I frequently become stressed out and annoyed, and all of this probably contributed to my diagnosis in the first place. Trying to be calmer is very difficult for me, but it’s worth the effort because stress and anger only harms the gut and inhibits the healing process. I have redoubled my efforts after reading this insightful article from Adam Scheuer at IHaveUC.com.

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What are your tips for nipping a potential flare in the butt? 🙂

Day 90: SCD challenge complete – a review of the past 90 days (but it’s only the start!)

Today marks 90 days on SCD – the goal I set out to achieve based on the challenge in Surviving to ThrivingJordan Reasoner and Steve Wright – the authors of the book and founders of SCDLifestyle.com – used the specific carbohydrate diet (SCD) to help heal their guts after being ravaged by IBD, and continue to survive – and thrive – on the diet today.

I came across this diet last year, after researching alternative ways to fight my ulcerative colitis. I was newly diagnosed and my symptoms were under control thanks to steroids and chronic medication, but I knew I wanted to take a more active role in healing myself, and I knew that diet was integral to that. Most importantly, I knew I didn’t want to be on meds for the rest of my life.

Fast forward to January 2014, and after reading the book, I finally made the commitment to do its 90-day challenge. And here I am, 90 days later, having followed it to the T (albeit cheating once!).

Why I decided to document my 90 days

I started this blog for others who may have wanted to take up the challenge but who, like me, were unable to find any resources that explained, on a day-by-day basis, what it would be like to be on this diet. After all, the idea of the diet is terrifying! It’s extremely difficult, it takes a TON of patience, willpower, perseverance and commitment, and it’s definitely not easy – at least at first.

I didn’t know what to expect, but I went for it. And what I can tell you is that:

  • It is difficult
  • It is doable
  • It is absolutely worth it
  • YOU can do it

Apart from anything else, knowing that you are taking an active role in your own health, and discovering that you have the stamina to stick with something really hard, even in the face of daily – hourly – temptation – gives you a sense of accomplishment that is hard to beat.

Many of us fighting IBD got here due to poor diet – at least in part. I don’t know about you guys, but prior to SCD, I never met a sweet treat I said ‘no’ to. In fact, I discovered on this diet that saying ‘no’ is the best yes you can give your body (read about that here).

I realised that I needed to take responsibility for my health, so that if I ever end up facing surgery one day, at least I’ll know I did everything in my power to prevent it. How could I allow myself to continue on my unhealthy path knowing that I might be throwing myself under the bus? Moreover, I really hope to get off the meds one day – who wants to spend their life on Asacol and steroids?

After researching SCD for several months, I decided it would be worth a try – thousands of people swear by it. I finally took the leap and I’m so glad I did.

Did SCD work for me?

SCD has definitely helped to reduce some of the discomfort I experience, but more to the point, it’s helped me to pinpoint what is causing it (veg, mainly. Sob).

It’s also helped me to look more closely at some of my ‘less ideal’ eating habits, like binge eating, over-eating at meals, eating too fast and not paying careful attention to everything that I put into my body.

It’s allowed me to overcome my fear of flares. As you’ll know if you have IBD, the thought of flares is terrifying: you never really know when they’ll hit, but you may know that certain foods can trigger them. On SCD, I’m not eating ANY foods that are known to cause my flares (this is different for everyone). It’s great to not live in fear of the next flare striking.

It’s also taught me (out of necessity rather than choice!) how to make the most amazing foods at home – like nut milks, 100% natural meals and YOGURT! I make my own yogurt, guys (recipe here). I mean, that’s insane! It’s taught me how to pay even closer attention than I did before to food labels; it’s taught me how much crap can be found in foods that we’re tricked into believing are good for us. And it’s opened up a whole new world of fresh, natural, organic foods (including desserts!) that actually help to heal my body as I’m eating them.

Has SCD ‘healed’ me? Well I can’t say at this stage. I’m still taking my meds, as it would be silly for me to come off them without the green light from my doctor. However, at my last check up in February, there was ZERO sign of inflammation – something that I’ve had since 2012!

Also, I was really hoping that SCD would help me overcome bloating, but that’s still a work in progress – as is the quality and consistency of my BMs. But again, this is okay – there’s no blanket cure that works for everyone, which is why any diet such as this must be tweaked over time to meet your body’s needs.

What next?

I’m going to do another 10 days on SCD, and then I’m rewarding myself with a well-deserved holiday to Malaysia and Bali (actually, the timing is purely coincidental, but I like the way it worked out).

I plan to transition to a paleo diet, as I feel that my body copes better with meat and protein than with veg and carbs, and also, I like the idea of paleo – I’m hoping it’ll work for me. It’s also grain, dairy and refined sugar free – items I intend to avoid indefinitely (plus I’m lactose intolerant) – and I love that it’s so clean. When I get back from Bali, I’m hoping to turn out whole apartment into a paleo zone! It’s going to be so much easier if we’re both following the diet.

Today’s meal

Did I cheat today, on day 90? Nope! Although I did do something naughty that I warned you guys about waaaaaaaay back in the early days: I ate at a restaurant (probably only the third or fourth time I’ve done this on SCD), and I didn’t ask them to cook my food without seasoning (here’s what not to do at a restaurant if you’re on SCD).

I ordered steak and veg, and luckily all the vegetables had already been added (successfully) to my diet: zucchini, green beans, broccoli and spinach. The steak, too, was fantastic, though it all came with seasoning and I suspect the veg had butter on it – eek! Bear in mind that dairy is totally fine on SCD after about 30 days, IF you can tolerate it. Butter is SCD legal, as are certain cheeses.

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This photo was very hurried as we were in a trendy restaurant and I didn’t want people thinking me a hipster

And of course, you’ll see the stem of my wine glass – we had the most delicious merlot to accompany our meal, and I toasted to the final 10 days on the diet. So cheers to that!

Day 88: Colitis risk factors & a few more tips to beat the bloat

Before I get into this post, I just have to tell you that I fed K another SCD meal tonight, and she loved this one so much she had THIRDS! As a once-vehement opponent to anything SCD, this is AMAZING progress and I’m so proud of us both – me for cooking something awesome and K for being brave enough to try it!

Anyway, onto the important stuff. As you’ll know if you follow my blog, one of my biggest GI problems (now that my UC symptoms are under control) is bloating.

Despite being a super healthy eater (or maybe because of it!), my mom also suffers from frequent bloating, and she has for pretty much her whole adult life. She suspects that she may have a sensitivity or intolerance to lactose, but unlike me, she’s never been tested (I think she’s too afraid to have to give up her cappucinos!).

Do you have similar GI symptoms to anyone in your family? Many researchers believe that there is a genetic link or predisposition to gastrointestinal disorders and diseases like UC and Crohn’s. Of course, no one knows the actual cause for sure, and there are many factors that are known to increase your risk of developing it, such as:

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I tick many (if not all) of those boxes. How about you?

Anyway, now that the most severe symptoms are mercifully under control due to diet and medication, I’m focusing on beating the bloat. Turns out, it’s much harder to conquer bloating than the symptoms of colitis!

That said, here are a few more diet tweaks that can help to minimise bloating (these target all my personal trigger factors):

  • Eat smaller portions of fruit and veg
  • Eat more lean protein and less veg at meals
  • Don’t drink large amounts of liquid in a single go (like downing a glass of water)
  • Don’t wear too-tight trousers or jeans – this makes me feel sooo uncomfortable even before I’ve eaten anything
  • Keep a food diary and track your intake and symptoms to identify problem foods
  • Reduce or cut out dairy (it’s worth being tested to find out if you’re lactose intolerant)
  • Eat less salt
  • Don’t binge eat!
  • Avoid carbonated drinks

What works for you?

Bloated

Day 87: 6 points to keep in mind about raw foods & IBD

On Phase 4, one can start to introduce raw fruit and veg. It’s much easier to prepare obviously – rinse and chop  – but for me, that’s about where the benefits end.

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I can’t comment on raw food diets – I don’t know much about them except that proponents swear by them and theoretically speaking, they should offer a number of benefits to the body.

For me, given the state of my GI system and UC history, I know that eating raw veg is a Very Bad Idea. The only two raw items I eat are bananas and avo – both of which must be very ripe before I consume them.

Raw food can seriously aggravate a damaged gut and even before my colitis diagnosis, my nutritionalist advised me to avoid it as my colon was in such a sorry state and struggling to digest hard, fibrous foods.

While some sources say that cooking fruit and vegetables destroys the enzymes and nutritional value, there are just as many sources that say this isn’t true.

It’s up to you to decide whether to include raw food in your diet, but if you have IBD, it’s worth considering the following:

1. As anyone with IBD knows, raw food contains lots of insoluble fibre which can be irritating to the gut and very hard to break down. This can aggravate your IBD symptoms and lead to bloating, gas, cramping and diarrhoea. Yup, I probably don’t even need to mention this to you!

2. When you’re flaring, avoid veggies that are known to cause these symptoms – the sulphur-containing veg like cabbage, cauliflower, Brussels sprouts, beans and broccoli. Instead, stick with those that are easier to digest – the phase 1 veggies like butternut, carrots and zucchini, well cooked and blended.

3. If you’re prone to bloating and gas, peel all your fruit and veg before eating it, and remove all the seeds. Yes it’s a time-consuming task, but it may well be worth it.

4. Also be careful to avoid vegetables high in insoluble fibre when you’re flaring, like peppers, celery and sweetcorn. These can also be damaging to people with strictures. I know from past experience that sweetcorn wreaks havoc on my system and I always avoid it.

5. If there are fruits or vegetables that you can’t tolerate raw, try peeling, de-seeding and cooking them and see if your symptoms improve. You may even be able to tolerate them raw but without the skin and seeds – like cucumber for example. Test, test, test!

6. The guys at SCDLifestyle.com recommend starting with berries when you transition to raw food on SCD, as they’re the easiest to tolerate and they can have a very healing effect on the gut.

Raw food is okay for him but not for you - and not for kitties with IBD (it's a real thing!)

Raw food is okay for him but not so much for you – and not for kitties with IBD (it’s a real thing!)

For now, I’m mostly avoiding anything that isn’t well cooked, and even so, I’m still experiencing major bloating, gas and cramps. Vegetables are my UC kryptonite but I’m not keen to give them up. I’ll keep phasing in more of them as I progress on phase 4 and see how I fare.