What It’s Like Living with Ulcerative Colitis (and Why I Quit My Super Strict Diet)

ulcerative-colitis-quit-scd

Most people haven’t heard of ulcerative colitis. It’s an IBD (inflammatory bowel disease) similar to Crohn’s and I have it. It’s the reason I ate nothing but meat, vegetables, fruit, cheese and butter for five months.

When told ulcerative colitis is an IBD, people sometimes say, ‘Oh yeah! I have IBS. It’s awful.’ But it’s not the same thing. ‘Irritable’ and ‘inflammatory’ are different. ‘Syndrome’ and ‘disease’ are different. Ulcerative colitis isn’t just getting a bit bloated after eating some bread and having to run to the toilet a few times that evening. Ulcerative colitis can literally kill you. (I mean, it probably won’t, but it could.)

Doctors still don’t know much about the disease – why it happens or how diet affects it (in fact many doctors are adamant that diet makes no difference at all, but I have my own proof that this is not the case) or anything useful like that. It’s a complicated fucker, shrouded in mystery. Here’s what I think I know about it:

The Symptoms and Treatments of Ulcerative Colitis

Ulcerative colitis is an autoimmune disease. Basically, your body thinks your colon is being attacked by, I don’t know, some bug, and so it fights back – it tries to destroy the bug. Except there is no bug (well, maybe there was the first time, but now there isn’t). Yet it keeps on attacking. Your immune system goes mental trying to kill this non-existent bug in your colon. But really it’s just attacking… your colon. Sigh. Naturally, your colon gets inflamed, because that’s what an immune response is. Inflammation.

Trouble is, it stays that way. Your immune system keeps attacking and your colon is perpetually inflamed. Unfortunately, when you’re inflamed FOREVER, the tissue starts getting fucked up. Ulcerating, if you will. And bleeding. This leads to fun symptoms such as diarrhoea, blood in your shit, cramping, pain and, if you’re unlucky, a perforated colon. Which can kill you, understandably, if not treated. Ulcerative colitis can also cause fever, weight loss and malnutrition.

Treatment starts off pretty light. The first step is an anti-inflammatory drug (aminosalicylates) designed to, well… stop the inflammation. These drugs can be taken long-term to keep the disease in remission and don’t have many side effects. I’m not sure how they work. Magic? If they don’t work, the next step is steroids, which are designed to do the same thing but MOAR. These can have nasty side effects and shouldn’t be taken long-term. And if THAT doesn’t work? It’s time to start suppressing the immune system instead. Among other things, your options include chemotherapy (which I’m sure you know can blitz the immune system completely). Surgery is another treatment. Surgery to remove the affected part of the colon. They call this a ‘cure’. Ha. Aha. Ahahaha. Oh stop.

My Experience with Ulcerative Colitis

For me, ulcerative colitis means a godawful churning in my guts. Churning is the best way to describe it, and it is definitely not something you get with regular diarrhoea or food poisoning. This is how I can tell the difference when I first flare up. (I have had food poisoning many many many times in my life, and I probably need to be more discerning about what I put in my mouth.) So yeah, the churning. It’s uncomfortable and it always precedes the need to run to the bathroom. I know through experience that if I stand still for a few moments the sensation will pass and I can hold it in, though this probably makes me look a bit weird to my friends who will turn round and wonder why the hell I’ve stopped walking and am just staring at the ground. It’s not like it looks like there’s anything wrong with me.

Once in the bathroom, well – I’m sure you’ve had diarrhoea before. I shan’t gross you out with the details, although I will say that living alone is a godsend, because the toilet needs cleaning much more often than usual. Cleaning the toilet every single time you use it is such a slap in the face when you’re feeling rough and just want to lie down. Talk about adding insult to injury. At least living alone means you get to wallow in your own shit for a while, so to speak.

When my UC is active, I am on the bog a minimum of five times a day, but usually five times within the first hour of waking if I’m honest. My UC is worst first thing in the morning and last thing at night. It took over a year for me to get diagnosed after my first flare up. Imagine having diarrhoea 10+ times a day for an entire YEAR, guys. That was my life circa 2008-2009. Though for the record I didn’t let it stop me enjoying myself. In the most ridiculous timing ever, I first flared up literally weeks before I was due to fly to the US to work at a summer camp for kids followed by a few weeks of backpacking. I was 23. It was my first time travelling abroad solo. My first time backpacking. And I had to do it all with this relentless diarrhoea that I did not know or understand the cause of. But I still remember that as being one of the best times of my life.

When my UC gets REALLY bad it looks more like this: all of the above, but with the added bonus of blood. And let me tell you, shitting blood is not fun. It feels different. It’s not exactly painful, not for me at least, but it resembles something like pain. It’s more than discomfort. Maybe it’s just a different kind of pain, not the excruciating kind. You clench and sweat and bury your face in your hands and the blood dribbles out, often unaccompanied, just to make you 100% certain that yes, you are in fact shitting blood and it’s not just those strawberries you ate earlier.

The blood also comes with the sensation of never feeling quite empty, which can lead to sitting on the toilet for literally an hour OR (and this is my favourite) deciding you don’t want to sit on the toilet for an hour waiting for this to be over, so you go back to bed. And then get up again 20 seconds later because your body’s decided yeah, now it’s ready to continue this shit parade. Repeat over and over for an hour. And this ALWAYS happens at like, 2am. And is usually accompanied by a fever. The fever always seemed like a weird symptom to me, but thinking about it, I guess it’s just another immune response, isn’t it? The body trying to sweat/shiver the disease out of you. (Doesn’t work, body, but thanks.)

And you know what, guys? That’s the worst it gets for me. I’m one of the lucky ones. Especially so because the mildest treatment – the aminosalicylates – works for me. Thanks to the extensive food/medication diaries I kept for a year, I know that the medication kicks in on day 17 for me. I’ve never had to take steroids or anything worse than that. And, thanks to the experiments with diet I conducted earlier this year, I now also know that I can treat my symptoms through diet alone.

The thing I find really interesting here is that fixing my diet clears up my symptoms within 12 days. But the medication takes 17 days! If I stick to the diet AND take my meds, I clear up in 4 days flat.

Some Good Things About Having Ulcerative Colitis

Some good things about having ulcerative colitis include: I now know how to spell diarrhoea without looking it up; it can be used as a legitimate excuse for when you want to cancel plans (although, as a business owner, ‘I have to work’ also works on pretty much all occasions FYI); sometimes it is nice to have an excuse to lie in bed and watch Netflix all day. Uhh, I’m trying hard here, guys. I don’t know. You get to tell people you have an autoimmune disease and maybe it makes you sound like a bit of a badass? Umm. What else? Oh, when you tell people you don’t want to drink alcohol/eat that slice of cake/whatever you can just tell them you have to stick to a super strict diet because of this disease you have. Shuts people up a hell of a lot faster than ‘I’ve decided I don’t want to’. And that’s it, really. Having ulcerative colitis sucks.

Why I Quit the SCD (Specific Carbohydrate Diet) and Went Back on My Meds

So, why have I gone on this epic ramble about my disease? It’s just a long-winded way of getting on to the topic of a 28-day experiment I announced I was doing back in April and then never spoke about again. After five months of eating strict SCD and healing my ulcerative colitis symptoms without medication, I decided to conduct an experiment in reintroducing ‘illegal’ foods into my diet. I was going to have CHEAT DAYS. Every Saturday I would eat whatever I wanted, sticking to strict SCD the rest of the time. Here was my rationale:

Last week I figured out that the Specific Carbohydrate Diet has already healed my guts. I’ll explain why when I write up this experiment’s results, but what this means for me is that I can now eat whatever I want and not get ill (this usually takes about a year’s worth of medication to accomplish).

But now I have to be extra cautious. Knowing I can eat whatever I want could potentially be bad news for me. I could easily slip back into my old ways, eating whatever the hell I want, which could lead to feeling like shit, having no energy, putting on weight, and maybe even having another flare-up of my ulcerative colitis. All bad things that I don’t want to happen. I don’t want to go back to my old eating habits, but I do like the prospect of indulging occasionally.

This did not go to plan. At all. First of all, I WAS WRONG. Very wrong indeed about the whole ‘this diet accomplished in five months what usually takes over a year with medication!’ thing. If I take my medication for over a year, I can usually come off it and not flare up again for a long time – I go into remission, essentially. I assumed (hoped?) this was what I’d accomplished through diet.

It was a confusing time, to be honest. Before I’d decided to conduct the experiment, despite still sticking to the diet, I’d started getting diarrhoea again. Initially I assumed it was UC. I was frustrated, especially because I had stuck to the diet so religiously. I resigned myself to having to start the diet over (you begin with a very limited diet and start reintroducing other ‘legal’ foods, like eggs, fruit and raw vegetables, as your symptoms clear up). I did not want to do this (the first few days are so hard) but felt I had to. So I decided to have a big blow out and eat whatever I wanted for a few days before starting over. I basically ate all my favourite foods in the span of five days: burritos, Chinese takeaways, pizza, you name it, I ate it).

And then something weird happened. My symptoms cleared up. Huh? What the fuck? In retrospect, I was probably just eating too much fruit. Like, way too much fruit (I ate a lot of it because it was one of the few things I could have that felt like a treat). And it was probably just ‘normal person diarrhoea’. Although I don’t really know for sure.

Anyway, that’s when I decided to do the cheat day thing. But my timing was epically bad. Right in this middle of my proposed 28-day experiment, I visited my nan for a week. I mean, you know what grandmothers are like, right? THEY’RE FEEDERS. I had a week of ‘Ohh, just have a bit more, Karen. Are you sure you don’t want some more? There’s plenty left! How many sausages do you want? Three? Well, here’s five. Do you want some supper? Ooh, how can you go to bed without having some cheese and crackers?’ Fucking nans, eh?

Needless to say, I was revelling in my newfound food-freedom and just fucking ate whatever I felt like during that trip. HAHAHA, stupid Karen. Precisely 9 days after starting to eat junk food all day every day (which, yup, is what happened) I flared up again. It was UC for real this time. Complete with gut-churning. And it took a mere 21 days for the blood to appear. Not long at all.

When I realised my huge fucking error of judgement, I decided to go back on the diet again, but this time I was going to reverse engineer it! I figured this would help me learn more about my disease and how to control it. So instead of cutting right back to the basics, I wanted to include everything that’s allowed on the diet when your symptoms have cleared up and cut things out one by one. I would test each item for 12 days before cutting it out, because I knew that’s how long it took for me to get better on the ultra basic diet. This felt more bearable than eating nothing but chicken and boiled carrots for two days. Ugh.

That was the plan. But I got so fucking frustrated, guys. It was hard. Much harder than the first time, because I knew it was going to take a long time. You also have to remember that throughout this whole time, I was shitting liquid multiple times a day, often with a side of blood and fever thrown in. And I was heading to America soon on a two-week trip. I was also already thinking about hitting the road later in the year and panicking about how I was going to be able to stick to such an insane diet. So, much to my mother’s relief, I decided to go back on my meds. And that’s where I am now. I am a person with normally functioning bowels again. All I have to do is wash down a sachet of tiny pellets with a glass of water twice a day and I’m good.

How I Plan to Cope with Ulcerative Colitis When I Travel

This is what two months of my medication looks like.

This is what two months of my medication looks like.

Earlier this year, when I was in the middle of my diet and still going strong with it, I seriously considered establishing a permanent base and taking shorter trips out of Edinburgh to sate my travel bug. This way I could stick to my diet while at home and allow myself to try new and exciting foods while in other countries and not have to worry about finding the ‘right’ foods in unknown locations.

Obviously I’ve now decided not to do that. It helps that the diet didn’t exactly go as smoothly as I’d hoped, but I’ve also decided that I’d rather just take my meds and be healthy on the road. The only thing I’ll have to worry about that way is getting my hands on my medication and toting it around. (If anyone has any experience in this, I’d love to hear about it! I take Pentasa.) I’m so glad I ate SCD for those five months and learned that I can heal my guts through diet alone. This reassures me to some extent that even if I can’t manage to find my meds, I should still be able to get back on track and heal myself to a degree. (I’m sure I’d be extremely motivated to ‘eat right’ under those circumstances, and with the right motivation I can do anything.)

For now, I plan to take my meds for the foreseeable future. At least until July 2017 – a year after I started taking them again. Possibly for two full years. Possibly forever (but probably not, knowing me). I’d also like to work on my relationship with food and tweak my regular eating habits so they resemble something more like SCD. I haven’t ruled out the possibility of going back to strict SCD in my future either. But as no one knows how the fuck the future will unfold, I’m just taking this day by day.

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    4 Comments

    1. I can so relate to so much of this! I was diagnosed with UC in 1999, and it suuuuucks. I’m amazed you’re able to go off your meds at all, and that you have never been put on steroids. Luckily I haven’t been switched to the strong immune suppressing drugs yet, but my last doctor before I moved said I might have to if I keep getting flare ups so often. For me it’s mostly a stress thing. Food definitely affects my UC, but stress is by far my biggest trigger. I’ve been hospitalized twice, second time was so bad I was in the hospital for 2 weeks and bleeding so much I needed several blood transfusions.

      I looked at the SCD a couple years ago and it looks like such a pain, like you have to consult a ridiculously long list to determine if the thing you want to eat is allowed or not. I ended up trying Paleo, which is still really restrictive, but it was easier for me to deal with eliminating certain food groups instead of how SCD does things. Paleo is also really difficult and kind of impractical to stick with, so now I avoid gluten and dairy 99% of the time because I definitely do better without them. And then I have a long list of other things that bother me that I avoid or eat in small doses.

      You mentioned you can tell when it’s a flare up as opposed to food poisoning…I’m the same way, and it’s so irritating when a doctor is like, let’s get a stool sample and run some tests to see if it’s food poisoning. NO! I can tell the difference, not the same at all, even if I can’t completely describe it. I just KNOW.

      Another thing I started this year is turmeric pills. I had read a lot about how wonderful the turmeric root is, but I don’t really like cooking with it because it turns everything yellow. But then I found out they make it in pill form. My iron was super high because I took iron pills for years, not realizing the doctor who recommended them only meant for me to take them for a short time, and apparently the body isn’t good at getting rid of excessive amounts of iron all by itself. But after taking the turmeric pills for a few months, my iron numbers were drastically reduced. I’m still higher than normal, but it’s a lot better. Turmeric helps with inflammation, and I think it’s one of the reasons I’ve been doing so well this year. (My 2 week hospitalization was summer 2016.) I actually started feeling a flare up coming on towards the end of September, and I upped my normal meds and started taking 2 turmeric pills a day instead of just 1 (the normal recommendation is 2 pills anyway) and for the first time in 10 years, I’ve been able to keep myself from going completely sick and, you know, liquid-y.

      When I travel (and I do a lot) I always take extra meds and I try to bring steroids in case I get a flare up. Probably not a good plan for you since you’ve never taken the steroids, but I think you can definitely handle traveling. I also research where the closest city is with decent medical care, so if I’m in Cambodia and got sick, I know I could book a flight to Singapore. My thing is, for as long as possible, I do NOT want to let this stupid disease keep me from doing the thing I love.

      1. Wow! Thanks for sharing, Ali. Sounds like your UC is way worse than mine :( I’m REALLY lucky that mine is only mild, as I know how bad it can get. It almost killed my nan once.

        I actually found SCD easier than paleo, because you’re allowed cheese and butter, which make a HUGE difference to me.

        And yeah, it’s so obvious when it’s food poisoning and when it’s UC. For one thing, my UC doesn’t make me puke (although it did make me feel nauseous once, which was weird because it doesn’t usually).

        You’re so right though: we should not let this stop us from living our lives!

    2. Me again, sorry! I can also totally relate to this as I also have UC, diagnosed May last year following a trip to Peru (dysentery, parasitic infections, salmonella – the works!) I am also on Pentasa, but for the first few months post-Peru I was really poorly and did get put on steroids, which make you feel like a superhero because I could stop eating eggs, plain chicken and plain rice and eat whatever I wanted. But as I tapered down the steroids, I got poorly again, so I cleaned up my diet in quite a general way (less sugar, less gluten, but nothing cut out) and have been hanging on in there in remission since about October last year. I can even manage a tiny bit of alcohol now, which I didn’t have for over 8 months.
      I would agree with Ali that turmeric tablets help a lot, as does really pure magnesium tablets (Lamberts Magasorb was recommended to me by a nutritionist.) Magnesium as it’s ‘nature’s relaxant’ and, if you’re a bit hectic and wired like I am, they dial down the stress responses a little – I’d definitely recommend giving it a go! (I also used to have savage muscle ache after sport and this seems to have disappeared now thanks to the magnesium.) I also take a probiotic and some fish oil, but I think it’s the turmeric and magnesium (and obvs the magical mystery drug Pentasa) which help the most.
      I think I’ll cling to the safety blanket of my Pentasa for a while longer, but I have toyed with the idea of coming off it!
      Hope you stay well, and I enjoy your blog a lot :)

      1. My docs always tell me off for coming off my Pentasa without telling them. I think I need at least a year on it before I can come off without flaring up again, although tbh I am now just thinking of staying on it, since it’s free to get here in Scotland and my doc pointed out that the increased cancer risk is to do with the inflammation. And, well, Pentasa = no inflammation for me, sooo…!

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