Dietary restrictions…

Through another friend of mine who also has Crohn’s, I found this article from Sarah Wilson, the champion of “I Quit Sugar” about the power AND lack thereof of diet in healing chronic illness.

And it’s brilliant. Although, I did feel a twinge of sadness reading it, but mainly because I know, deep down, that it’s true. The article talks about the concerns of unwell people who are SOLELY using diet as a way of healing diseases. And as much as I am a massive advocate for food and its healing properties, I know that for me, cutting out gluten and dairy (and the 100 million other things) will NOT cure me. It is a delicate balancing act of EVERYTHING – food, medicine and alternative therapies combined with a positive attitude, determination and an awareness of what is truly happening in my body.

I know that eating well helps me feel better and helps prevent a lot of the symptoms such as inflammation that comes with Crohn’s, but diet is a form of MANAGEMENT, not a cure. I wish it was as simple as eating well and everything would just fall into place, but I also know that “bending the rules” of my diet still happens, so I’m grateful that I have all the other features of my health management plan to depend on to accommodate the slip ups. And vice versa – when my medicine isn’t doing enough of the job, I need to go back to my healthy eating to support my system.

So my advice is to be open to learn about the many different ways of healing and management that can be available to you, no matter what you are going through. You’ll find your winning combination that helps prevent flare ups and manage your life better at some point.

Don’t just depend on that ONE thing – looking after yourself requires a lot more support than that from many different avenues, and although food and diet is a fantastic way of helping the healing, it can’t be the only thing you do.

Breaking The Rules

jellybelly

So this happened last week… I broke the rules. My “healthy eating” diet rules that is.

I had a crappy week – personally and professionally – and as Hump Day approached, I was feeling sorry for myself, staring at the giant 50 flavours of Jelly Belly jelly beans that had been gifted to me about 3 months ago in my office and thought, “Why the hell not?”. I should be proud that I held out from opening them for 3 months! But hey, I cracked and ate all of the “Berry Blue” flavour in one hit (you can see the missing jelly beans in the 2nd row).

Post-consumption, I felt guilty and proceeded to rope in my colleagues into my shame spiral by getting them to play the Jelly Belly game, where I would give them a jelly bean and they would have to guess the flavour. Guilt is better when you share it!

The next day after my jelly belly scandal, I felt fine. Totally fine! I was surprised, but acknowledged that I felt this good because 99.9% of the time I eat totally healthily to support my Crohn’s and my digestive system. What was a handful of processed sugar?

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Quinoa…more like Quin-WAH!

Red_quinoa
I ate quinoa for lunch on Tuesday. It’s now Friday and I am STILL seeing remnants of it in my poop! What the hell is that about? It is soooo tiny, I figured they would be easy to break up in the body? Or are the scraping out the insides of my intestines as they flow through? And how is it possible that after so many days since eating it, I am still finding traces of it???!? Surely that’s not a good sign, is it? And P.S, corn does the same thing – the kernels come out just as they went it!

(10 minutes later after consulting my oracle, Google)
Ah ha! It’s all good apparently! According to several online sources, fibrous foods such as quinoa help bulk up your poo and typically show up intact upon evacuation.

Here are some goods links to tell you what your different poops mean based on their consistency, frequency and colour:

7 Things Your Poop Says about You

What Your Poo Says about You

Don’t be afraid to keep checking out your poops – they might be telling you some important messages about what’s happening within your guts. Plus, it’s kinda funny to observe!

During my periods of remission, I feel great! Healthy and strong and “normal”. In remissions, I feel like I am in control, like I don’t have Crohn’s anymore, and that I have unlocked the secret to staying healthy. How quickly I forget! It’s like I am SOOOO positive and optimistic about it that I actually avoid being realistic about having a life long autoimmune disease! It’s super annoying that I live in denial land so regularly…

I’ve felt so good in remissions before that once I actually halved the dose of my medication on my own, without my doctor’s permission. Even for a period of 6 months, I completely stopped taking any Western medicine as treatment. I was feeling really toxic on the meds that I had been on for 9 years, and figured that eventually I will have to wean off them, so why not start the process now? #dumb
In remission, I even start referring to my Crohn’s in the past tense “I did have Crohn’s…” and “I don’t have Crohn’s anymore”, because I honestly convinced myself that through my positive languaging and an honest awareness of my body, that I could do it. *Sigh*. Don’t get me wrong – being optimistic, using positive language and keeping aware of your body does tremendously AMAZING things to it. But it ALONE cannot cure Crohn’s. It’s a balance.

So during these periods of remission, I aimed to watch what I ate because because I had known for years that gluten and dairy flare the situation. And processed sugar was the devil. I had read about it, heard about it, doctors and healers had told me… so I wanted to take it on board and watch what I ate…
To be fair, I talked a LOT about eating better, but rarely put it into practice. I was on a “reduced” dairy and wheat diet, as opposed to eliminating them. I ate fruit (healthy right? WRONG! Way too much sugar for your digestive system) with coconut yoghurt instead of regular yoghurt (Coyo is seriously the best invention! Go buy some now!), I ate more salads (healthy right? WRONG! Raw food is super hardcore for your digestive system to breakdown), allowed myself the cheat binge sessions (hey, I’ve been good all week…) which saw me devouring a bag of Allen’s ‘Party Mix’ lollies (oh how I miss you…). I thought that I was eating relatively well! No, no, no… if you’re going to halve your meds, and stay super positive about it (mind over matter), you HAVE to support yourself with your diet. Now, I’m not encouraging anyone to do what I did and make random decisions about the status of their heath, (because in the end, it didn’t work!) I’m just sharing my experience because anyone with Crohn’s, or an illness, will tell you that they just get to a point where they don’t want to deal with it anymore. It’s like denial wrapped in determination to prove your doctors and your body wrong. But really, the point I want to get across here is that diet is a HUGE factor in managing your Crohn’s…. HUGE!!! What you eat really affects your insides! I know this is a fairly obvious point, but seriously, most of us don’t live by it.

To be fair, it took me AGES to see the connection and actually want to do something about it. I had countless people tell me that gluten and dairy and sugar were bad for Crohn’s, but because I didn’t feel unwell after eating them, I thought I was in the clear. I was younger and didn’t quite understand how diet really affected our bodies, especially because I was taking medicine and vitamins as well. Surely all that helps negate the bad shit I’m eating? The medicine is meant to make the symptoms go away. WRONG! I needed to help my body from every aspect, and not just depend on medicine and supplements. Eating crap while on your medication is like someone rubbing salt into a wound, or an alcoholic continuing drinking even though they’ve been diagnosed with a liver disease! They’re thinking “Well, I’m taking medicine to help with disease”…but the alcohol you’re drinking keeps feeding the disease!

I guess eating like everyone else was eating helped me feel normal… no one would have to know I was unwell if I was doing the typical social things (like eating and drinking) with them. What finally tipped me over the edge to change my diet was my recent relapse after a wonderful and beautifully long remission. I was now also older (hopefully wiser!) and ready to take on the responsibility of caring for myself and my health. I had access to research different studies and health websites and blogs and learned from health experts how diet can change your life. I now had access to the resources that I would need to have an alternative diet. Thank god we live in a world where there are supermarkets that are dedicated to alternative food options! Now you can go to restaurants that specifically cater for a paleo diet, vegan diet or even offer gluten and dairy-free options! 10 years ago this would’ve been extremely difficult, you would’ve been that wanker in the restaurant that the waiters and chefs roll their eyes at, and you just would’ve been a freak amongst the company you were with!

Another thing that woke me up to my diet was a recent food allergy test I did via my blood work. From this blood test, you can see that everything that exceeded the green colour zone was food that my body was reacting to. It looks all crumpled up because I carry that piece of paper with me to remind me to keep strong if I’m craving a cheesecake!

allergy 1allergy 2

I was sensitive to EVERYTHING I was eating! While my Crohn’s was in an active state, my immune system was attacking EVERYTHING foreign that was entering into my body, including the food I was eating! This meant that I was staying in an inflammatory state and I was creating a weakened and leaky gut from the food I was eating. I even told my doctor that I didn’t feel bad eating these foods though! Milk was the only thing I ate that I felt immediately bad after. And then she told me that I may not have have physical symptoms but my body is feeling it on a microscopic level! The blood work proved it! She said it can take up to 2 weeks for your body to respond to the food that you put in, and by that stage, you can’t remember what triggered you feeling unwell in the first place! When I got these results, I cried. I cried for a couple of days, mourning the loss of my favourite foods. I honestly didn’t know how I was going to do it! I now had to eliminate the following: gluten, dairy, fruit, processed sugar, nuts, dry beans, soy, corn, potato, eggs, mushrooms, yeast, chocolate, alcohol and coffee. YES! EVERYTHING! hahaha… but I turned my focus around to look at the things I COULD eat – lots of meat (I had a protein deficiency as well) and vegies, rice, buckwheat, sweet potato, honey, stevia, coconuts (absolutely adore!!)… it seemed restrictive at first but in actuality, it isn’t that hard. It helps that my husband is eating my diet, which we’ve labelled as being basically Paleo, but minus the eggs (but I can eat duck eggs, which are awesome. Kingsley’s Butchery in Rose Bay sell them, as they are hard to find!). So focusing on the good things you can eat, and not on the things you can’t eat, will help you get through the change in diet.

Another thing that pushed me towards the “I need to do this NOW” about my diet was the fact that I got recently married…it stopped being about me. I wanted to have a healthy life so I can be with my husband for as long as possible. And then I want to start a family one day. I cannot be in a sickened state and have a baby! Majority of the medications I am on will poison any child that I would want. I have to be off the meds for at least 3 months prior to even conceiving. It has to happen when we plan it to happen. I have to be super strong and healthy so that I can grow a baby inside of me! Every doctor I’ve seen recently I’ve had to tell them that I want a child in the near future, so they know which medications to put me on that are safe for having children with. I’ve already been told that I won’t be able to have children naturally and that I’ll need a C-section (no problem with that) so as to avoid ripping apart an already weakened area…and THAT was a wake up call for me that it’s more than me now that I have to think about.

I know its hard, trust me, it’s taken me 14 years to actually see and feel the difference that my diet has an affect on my constitution! So no shame if you’re not ready to change the way you eat! But I feel so good now, I can’t believe I didn’t try it sooner! You may feel fine eating what you are eating, but can you believe me that you can feel even BETTER when you eliminate the bad foods from your diet? DO what you need to do. Don’t just TALK about it.

When you get to a stage where you feel “I just don’t want to feel this bad anymore” then make a CHANGE. Just do it! When you get to that stage, whenever it might be, it’ll be worth it. I know people want to learn on their own and with their own experiences, but I hope this blog helps inspire you to get to that stage… it took a few key things to set off the “I NEED TO DO THIS!” urge, but I’m here. Finally. I am going to take control of this Crohn’s. From every direction – medicine, diet, exercise, rest, energetic healing, supplements…this is my magic formula.

With Crohn’s, its all about remissions and relapses. The relapses will happen in time (until they find a cure!) but the main idea is to stay in remission for as LONG as possible. And if eating differently manages symptoms, supports my immunity, counteracts side-effects of medications, then hells yeah, I’m going to do it! I hope you do it too… when you’re ready.

http://dealingandhealing.com/15/

My recent relapse, and how I got through it…

I had a relapse with my Crohn’s about 3 months ago now, and my best friend, noticing that it had hit me really hard, encouraged me to start writing this blog. It was amazing how this recent relapse threw me! I had been in remission for 3 years (that is, 3 years ago I had a small external abscess near my anus that needed clearing – I say this is ‘minor’ surgery because they didn’t need to enter within!) and before then, the end of 2009 to the middle of 2010, was probably my worst year dealing with pain, where after a bowel movement I couldn’t move for about 3 hours from the pain, and if I had to go to work, I swallowed as many painkillers as I could safely consume and just walked really slowly, or sat on a pillow. So all up, I was kinda in “remission” for 4 years…

So when things got bad in February this year, I was shocked! I thought I had overcome the Crohn’s! I thought I had tricked it into staying in remission forever…wishful bloody thinking! I didn’t have the typical symptoms that tell me that things are going badly – stomach cramping, puss, diarrhea, bloody stools, fever… But the symptoms I did have included the following:

Frequent bloating. This type of bloating is the kind that makes you look 5 months pregnant, where it’s painful to sit or stand because you feel like your insides are going to explode from within, or it feels like you are wearing a corset around your midsection that is cutting off circulation to your organs…it’s a tight, horrible band of discomfort around your stomach that even makes your back hurt…and you just can’t get rid of it for the whole day!
But I had explanations for those… that time of the month, or I ate something funny, or I’m constipated… I kept finding justifications, instead of realising this was a NEW way that my body was telling me that I wasn’t well.

Regular constipation. Not doing a poo for a day is not really considered constipation. Not pooing for a day and then feeling the urge and NOTHING comes out even though you are pushing or taking heaps of laxatives, and you find yourself praying to the Gods while on the porcelain throne, THAT is constipation. Squatting helps, so that you don’t burst anything by pushing too much… just saying… But I too had an explanation for this – I didn’t drink enough water today, I ate too much pasta, I haven’t done enough exercise, I’ve been sitting too much at work, my stricture is flaring… once again, didn’t realise that this was a whole new way of showing me my Crohn’s was active.

Tired. I felt so goddamn tired! I could barely make it through a day at work! I had naps during my lunch break or free period (I’m a teacher) and developed a love of coffee (with soy milk of course). But my explanation for that was that I was stressed (I was planning a wedding after all), or had a cold, or had a big weekend and I’m older now so it takes me longer to recover… I even went and did a blood test because I realised something was wrong, maybe I was anaemic? Maybe I needed more iron or vitamin D (everyone with Crohn’s has a Vitamin D deficiency as that’s part of the autoimmune problem), and the results showed that there was inflammation in my body (high white blood cell count) but I had the flu or a sore throat, so that made sense…right? hmmmm…. wake up girl!

I didn’t realise that over a 6 month period, my body was SCREAMING at me that things weren’t right. I was in denial land again… I hate that place, but keep going back to it. I was looking for all the OTHER symptoms that I usually experience to tell me my Crohn’s was flaring, and not realising that these were NEW symptoms that I now need to watch out for. I now know that if ANYTHING doesn’t feel right in my body, then it’s probably the Crohn’s and I have to get back to diligent managing!

So when I woke up one Friday morning in a lot of pain down there, I’d noticed that I had (I’m not shitting you now…) grown what appeared to be a testicle overnight. My left labia was REALLY swollen. I was like, that’s weird… did I sleep in a funny position? Did I get too freaky with my husband? Was I bitten by something? Hmmm… why don’t I just see what happens with it tomorrow (denial to deal with it now situation). I spent the day at work, and any opportunity I had to sit down, I would have my legs elevated (because that helps reduce swelling in weird areas, right?). On Saturday morning (I was acting quickly this time! The very next day!) I made an appointment with my GP at lunch time because the swelling became super painful, that even wearing underwear was too much! I casually sat on the couch with an ice pack between my legs until it was time to go to the doctor. As soon as she examined me, she told me I need to go into hospital because I had a Bartholin’s cyst that needed to be incised immediately. Bartholin’s cysts are apparently a very common affliction in women – 1 in 50 get one. It’s a gland near the vaginal opening that can get blocked, and when it does, pain and swelling ensue. I comically texted my girlfriends on the way to emergency with my husband, to tell them that they were now safe, because I had gotten the Bartholin’s cyst for the group.

Anyway, spent the night in hospital, they opened the cyst and left in some dissolvable stitches to help with drainage, and Sunday I was home. No biggie. Got a medical certificate for the week because I would need that time to recover and avoid being on my feet (my whole job!) in case gravity took it’s toll and made things more swollen. Sweet! Week off work!

Pffttt…that excitement lasted a whole 3 days… on Wednesday the swelling became worse. It doubled in size and turned beetroot red. I could barely sit down. I’d have to lie down with pillows underneath my legs to get comfortable. I couldn’t walk. On Thursday I went back to my GP who actually looked scared when she had a look down there… never a settling experience when your own doctor looks freaked out by the situation! She called my gynaecologist for me and made me an appointment with him the next day. It totally annoys me that when you call your specialist, it takes at least 3 months for you to get in, but if another doctor calls on your behalf, suddenly there is an opening??! Go figure… so on a side note, if something is flaring, go to your GP and get them to call a specialist for you!

When I saw my gynaecologist the next day, he confirmed that there was some whack infection happening post-surgery. He prescribed me Flagyl and Kefflex (super strong antibiotics) and gave me his personal mobile number. He said if I got a fever, then to go to emergency, otherwise, I would see him on Monday for surgery to incise it…again.
Over the weekend, I had a massive fever. Unfortunately, it was Mardi Gras weekend (party time) and I knew that if I went to emergency at St. Vincent’s (right next to Kings Cross!) I wouldn’t be seen until Monday anyway! So I got a script of Endone, texted my gyne about the situation, and lay on the couch the whole weekend.

On Monday I check into surgery. My gynaecologist wanted to get a gastro surgeon to have a look at me too, considering my history of Crohn’s disease. I was like, “oh, it’s not the Crohn’s. My vagina is the problem now…it’s not the Crohn’s”. I did an MRI (loud, bloody machine to lie inside for 30 minutes) and turns out WAHOO! It is the Crohn’s (total sarcasm)!  Turns out I had a a couple of abscesses – one in the labia and one in the perineum, and I had fistulae forming, which are little tracks or tunnels through your tissue that lead to infection and abscesses. Turns out, a long fistula was running from my colon into my labia. Fucking great. So now my Crohn’s had spread into my woman’s zone. Absolute DISASTER!

And that’s how my recent relapse totally screwed me over. I felt like my body had betrayed me. It didn’t give me my typical symptoms that raise the red flag for me to look after myself more carefully. I physically recovered from the incident (after 3 surgeries and insertion of setons), but emotionally I didn’t. I felt shame and embarrassment. I felt scared that I didn’t see it coming and that it had spread. I didn’t feel sexy anymore. I cried everyday. I screamed into pillows and wallowed deep in self-pity. And it was during this time that I depended on EVERYONE around me to help me feel strong again. The most important thing to have in your life if you’re dealing with illness is to have a support network of family and friends. Because no matter how positive you are, I can attest that you can lose that in an instant, and it can take you a while to get back on your feet (figuratively and literally). If it wasn’t for people reminding me that I’ll get through it, and that I can get better again, and lots of acupuncture (upped my sessions to 3 times a week), I would’ve stayed in my misery hole for much much longer. And this is also how this blog was born. It has been really therapeutic.

So this is what I suggest, that worked for me, on how to deal with a relapse:

1.Get angry. Super, hyperventilating type of anger. Scream, curse, pound your fists into your pillow. Pace the room aggressively.
But don’t let the anger last too long, because it’s exhausting and makes things worse for your healing in the long run.

2. Cry your eyes out. Lose yourself to the sadness and shame. Get it all out. All the emotion. Let your soul release it to the universe. And don’t give yourself an unrealistic time frame to get over it! Don’t say, ok, I am only going to feel bad for 2 more days. No. You need more time. It might be a week, or even a month – be realistic for yourself.

3. Have family and friends around you to support you. The hardest thing I’ve ever had to do was let people know I was unwell and that I needed help. I hid being sick for years so well from people, that even yesterday a good mate of mine of 10 years said he had no idea I even had Crohn’s! Call your friends and family and TELL them that you need them, because you’re having a hard time. Find the strength to do this, because it really helps when you are totally down and need to see that light at the end of the tunnel again.
And look at me now! I’m writing a blog sharing EVERYTHING! Now I’m just shouting to the world that I have Crohn’s! It sucks to have it, but hey, that’s just how it is.

4. Find your determination again. Hard to do at times, but it’s in there. After the emotional release, I was determined to do what ever was possible to get me back on track- I took time off work, slept as much as I needed, met with my naturopath, my holistic medicine doctor, got more acupuncture and energetic healing sessions, met with multiple gastroenterologists to find out different treatment options and tried those options, researched about drinking camel’s milk (yes, this is a thing: http://www.camelmilkmagic.com/), I tried aromatherapy, did food allergy tests, had salt baths twice a day, started a blog, started taking vitamins and supplements, and got massages to help me relax (essential therapy I swear!). Do whatever version of these things that you can do to get you in a positive direction towards healing.

5. Change your diet. Just do it. Cut out gluten, dairy and sugar. These elements are inflammatory. It’s hard to do because everything that tastes amazing has either gluten, dairy or sugar, or all three in them! But it is totally possible and I will write a blog about other beautiful options to eat. Avoid raw foods too (too harsh to digest) and don’t drink coffee.

6. Create a new mental checklist of ADDITIONAL symptoms that you now have to look out for. It sucks, but will keep you prepared for next time!

7. Be kind to yourself. Forgive yourself for not paying attention to the symptoms. Forgive yourself for not dealing with it sooner. It’s ok to be vulnerable. Say lovely things to yourself (and believe them of course) such as “I’m ok”, “I’m going to get through this”. Allow yourself the time to feel better, and pamper yourself to feel special. Don’t feel like a failure. And be alright with staying at home if you need to take it easy – be ok with saying “no” to people. Don’t push yourself too hard.

And guess what… before you know it, you’re recovering and moving towards remission again. It’s taken me 3 months to properly feel like I am physically, emotionally and psychologically better. I am dealing, and I am healing. And you can too. Remember that you’ve been healthier before, and you can get back to that place, it just requires some love and support for yourself and from others, and some determination to do everything humanly possible to get super well. Good luck xx

P.S My husband just likened this post to me writing the next Game of Thrones book. Sorry they’re so long! hahaha