Tag Archives: #inspiration

Crohnology

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No, I haven’t mispelled chronology – as a History teacher I know how things work in a timeline. What I’ve found in my research and through my searching of treatments that there is a fantastic site called Crohnology which is for Crohn’s sufferers to connect to other Crohnies in their area and trade treatment secrets. When you join, you identify when you were diagnosed, what treatments you tried, and your own wisdom about what worked and didn’t work and the reasons behind it all.

It’s all about Crohn’s patients empowering themselves and others with hopeful advice on treatment options out there, without the feeling that certain doctors are advocating specific treatments, or offering you advice on conflicting treatments. It also gives you the opportunity to chat with other Crohn’s patients, ask questions in forums, and indicate how you are feeling currently on a scale. A great place to start searching for answers, and also a great place to visit when you are having one of those shitty “Why me? day, and you can go online to this support group and see that you are not alone.

 

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Semi-vegetarianism – a way to have your meat, and eat it too…

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Check out this video about a dietary treatment for Crohn’s disease, promoting a semi-vegetarian diet, which means eat like a vegetarian, but have some fish and meat on alternating weeks…
http://nutritionfacts.org/video/achieving-remission-of-crohns-disease/

A compromise to my last post perhaps? Can I still have some meat?

It’s a shame I think vegies taste gross. To be honest, I only eat them because I know I should because I know they’re good for me. I have never gone to a restaurant and thought, “Hmm, I’d love to order some steamed vegetables right now. That’s what I’m craving”. Hell no.

But I do love feeling good and staying in remission… Food for thought.
(That was a totally awesome pun…just saying…)

A picture is worth a thousand words…

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I was really inspired today after receiving some messages from family and friends who wanted to bring my attention to Bethany Townsend – a Crohn’s sufferer who has a photo that has just gone viral of her in a bikini with her colostomy bags. What a champion! I actually came across her blog a couple of months ago when I was researching other Crohn’s blogs out there (there are so few of us blogging our experiences!) and was impressed and saddened by her experience. She has had a SERIOUSLY fucked up time with her Crohn’s disease, to the point where her bowel actually exploded! Sometimes I am grateful that I don’t have it as bad as some other Crohn’s sufferers, and it’s amazing to see her look so vibrant and together considering her struggles. GO BETHANY! I am so happy that her story has come out in such as positive way for her, and that her photo going viral is making her feel confident about herself and her colostomy bags. Check this hottie out: bethany townsend

http://www.news.com.au/lifestyle/beauty/picture-of-bethany-townsend-with-colostomy-bag-goes-viral/story-fnjcnzwg-1226975053562

So I had my own “picture” story today – I bumped into my surgeon at the shopping centre, and it was one of those moments where you aren’t quite sure whether you should acknowledge each others’ existence… This was because I had seen him in hospital only 2 days ago, and when I say “seen” I mean, I was unconscious and he was looking up my butt. Anyway, we bumped into each other and I said “Hi” and he said “Hi” back and before I knew it we were having a good ol’ chat about our respective shopping adventures. He asked how I was, but clearly the shopping bags in my hands were enough evidence that I was fine after we “hung” out in hospital together. So he says to me “Can I ask you a personal question?” and as I reply yes, I’m thinking of all the possible questions he may ask me (did you like my handiwork yesterday? are you in a lot of pain? is the stricture more comfortable?) and then he tells me that he is doing a presentation to other doctors about perianal Crohn’s disease and was wondering if I could mind being a case study. I was like “Sure! No problem”, and then he says that he will have to use photos of me (obviously without my face in it) to help his presentation. And once again I said “Sure! No problem”… I’m assuming he has photos from surgery, maybe even use a set of colonscopy photos… but he tells me that he doesn’t have any photos and will need me to pose for some! hahaha

So, this will require me to come into his office and lie down on my back with my knees up towards my chest, feet over my head, so he can take butt photos. Yes, I will be a butt model. I think this is hilarious and of course agree to it… it is for medical purposes after all, and I do have an appointment with him in 3 weeks time, so may as well! He’s going to be looking at my butt anyway, what difference does it make to me if he takes a photo? I figure that as a woman, if you have had a brazilian wax before, you really have no shame about people poking around down there!

Anyway, embrace yourselves ladies and gents! What you may believe to be a disfigurement/ugly/freaky/abnormal is completely awesome and acceptable to many people – whether it be your family, friends, loved ones, doctors or strangers! If you can be comfortable with yourself and your health condition, it’ll make life much easier for you when you are dealing and healing xx

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Famous people with Crohn’s

Shannon Doherty has Crohn’s?!?! Wow. Some new people to stalk…

This is just a little addition to my last post about having a deteriorated quality of life if you have Crohn’s – I’m in good company! A President, Athlete, News Anchor, Magician, Rock Star and Actress… pretty cool lives.

Anyway, wanted to post this inspiration that life goes on and life can be great with Crohn’s mainly because I am 2 hours away from going into day surgery today… needed a little pep in my step! My surgeon is going to clear things out (hopefully no more abscesses) and replace the setons, although, I am hoping he will remove a few of them entirely.

Wish me luck xx

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When everything goes wrong, remember this…

Lifebuzz putting things into perspective…

As much as I would like to NOT have Crohn’s, I have to admit that I agree with #1 that pain is a part of growing, and that my scars are symbols of my strength from #4. They have created who I am today…which is why I ultimately just keep on going (#8)!

Enjoy the read.

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Learning what Chronic illness is, and what NOT to say about it…

Ohmigod. I just learnt what the term “chronic illness” ACTUALLY means… I know this might seem like a bit of a “DUH?!” moment to some… some of you who know me may even be referring to my statement as another “blonde moment”… but I always thought that it meant someone who was REALLY, badly sick… I didn’t realise it referred to the LONGEVITY of the illness.

Thanks to betterhealth.vic.gov.au, I’ve learnt this:

Chronic illness means the illness is long term. A chronic illness can be stressful and may change the way a person lives and how they relate to others. 

Awwwww shit! I’ve got a chronic illness! It’s long term! I don’t get sick and then it goes away, I mean yes, there are periods of remission, but it’s always there! Lurking in the background, being wonderful on some days and punishing me on other days.

It totally makes sense that I was now having very strange conversations with my superior at work, who I thought was just struggling through the language barrier (and thick accent!) when I was telling her that I had Crohn’s Disease. She had told me that her nephew suffered from this too, and that it’s called “Chronic disease”… I was like, “No, it’s pronounced Crohn’s Disease”… and then we continued correcting each other. But now I realise we were both right, despite me having a giggle behind her back about her telling ME what I had!

Anyway, a friend of mine posted this link on Facebook – about what NOT to say to someone with a Chronic illness, or what they refer to as an “invisible disease”. Basically an invisible disease is the one that doesn’t give you maybe any outward symptoms, but your body or mind inside is doing fucked up things to itself. And it also refers to the fact that you may LOOK fine most of the time, so people are like “you don’t look sick”… yeah, well my liver toxicity is high from all the medication I’m on, my urine is pink as a side effect, my immune system is compromised from the immunosuppressant I am on, my tissue is eating itself because they think its bad causing abscesses, I’ve got setons that are draining, I take a million pills, I have to research menus online to find out what I can eat before going to a dinner party… the list goes on…

Don’t get me wrong, I know that the people around you who don’t understand chronic illness (who is basically ANYONE who does NOT have a chronic illness) such as family and friends are just doing their best to help you. It comes from a wonderful place of caring and trying to take away the pain and suffering by being in DENIAL for you (“you’re just having a bad day”), and so don’t be too unforgiving towards them! Unfortunately, they may know a lot about the disease/illness, and know how you suffer, but no one ACTUALLY understands what it’s like to live through, unless you have the same chronic illness too. This “thing” that just won’t go away, that you have to deal with…

To my beautiful support group around me, thank you for being so amazing! I must say, most of the 15 phrases listed in the link I haven’t heard from them, but from other people who maybe just meet me… It’s a pretty funny read, and may help others know what to say next time you come across someone who also suffers from chronic illness (my new favourite phrase).

Improvement!

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So it’s been over 6 weeks since I’ve started my new diet plan and have introduced many vitamins and supplements to support my system. This has all happened under the care of Dr. Yuwen Lee at Pymble Grove Health Centre (http://pymblegrove.com/practitioners/dr-yuwen-lee) who I was introduced to me by my mother, who was seeing her for her thyroid issues. My mum, a warrior for good health and preempting anything gnarly that might happen to me due to my Crohn’s, booked an appointment for me in September last year for February this year (so 6 months in advance, so call Dr. Lee now to make your consultation time for next year!) because she swore that Dr. Lee was absolutely fabulous and that I should see her to get some help. I didn’t imagine that I would be seeing her a week BEFORE my relapse and return to hospital, and that this was the PERFECT marker for me to compare the before and after effects of her guidance and treatment.

When I first went to see her, I was more concerned about getting to her, as she is almost an hour’s drive from my house! What a hassle I was thinking, but now, she is SO worth the drive! She is very friendly and before I knew it I was telling her EVERYTHING about my life. Prompted by some interesting questions, such as: “Would you describe yourself as a patient person?”, “Do you dream vividly?”, “What foods do you crave?”, I divulged in that 1.5 hour session my whole mental and physical functioning, including my moods and reactions to certain scenarios… which I couldn’t believe was relevant… but soon found out how it was ALL connected…
She weighed me, did a blood text, did a pinch (fat) test, touched my skin and hair texture… it was VERY comprehensive and I felt like I could trust her and that this was all good value to the small fortune I was paying her for the appointment.

Anyway, every 6 weeks I’ve gone to see her to check in on how things are working, how I am maintaining my health, managing which supplements to take, getting B12 injections, and my most recent visit to her on Wednesday proved that things are actually improving, just through a change in diet and taking supplements!
She went through her questions again and then highlighted how my responses were different now to what they were initially 4 months ago – I am no longer constipated, no bloating, no wind (seriously, I hardly EVER fart now – yes, girls do fart – and I notice it when my husband farts, I’m like “Hey! That wasn’t me, I haven’t farted all day…actually, didn’t even fart yesterday…or the day before…”), my energy levels are amazing, I feel lighter but stronger, my skin is glowing, my hair feels softer and I am not losing it in clumps, I feel alert, I can concentrate for longer periods of time, I’ve lost over a kilo of bad fat but have built up good fat (which means my body is now absorbing protein) and I am more patient and calm… seriously! It’s amazing! Just through diet and taking supplements where I have deficiencies has made ALL this difference. And I know this because the western medicine I am also on has been the same for the last 9 years and this is the NEW thing I introduced to my healing regime and I am feeling a difference, I am feeling the best I have felt in a super long time! I think it’s pretty incredible, and for someone like me who likes to feel in control (especially with my Crohn’s), knowing that I have contributed to this improvement of my health is just such a great feeling and achievement.

In all honesty, I had to change my diet enormously, which was sad and challenging at first to eliminate everything I loved eating… and I am on a LOT of supplements (recall my pillbox blog!) which can be annoying to take on top of my medication, but I’m taking them. Just to list a few of them: Zinc, Vitamin B, Vitamin E, Vitamin D, Pro-8 200 and Nilstat (probiotics), digestive enzymes, omega-3, cod liver capsules, and a bunch of other things for gut healing, liver support, biochemical imbalance and antioxidants. … just doing what I need to do, to feel and get better. And it’s working! That stage of feeling like I need to do ANYTHING and EVERYTHING to recover just pushed me into that focused zone of healing (and at times, sacrificing!) and now I am reaping the rewards!

To be fair, there are still symptoms of my Crohn’s that I would like to be different (I can’t claim that I’ve cured EVERYTHING), and I am not saying that diet and supplements are the ONLY way to heal Crohn’s, but it definitely helps SUPPORT the work that you are ALREADY doing to stay in remission. And when you feel this good – lighter, stronger, more energy, happier, calmer- you kinda don’t wanna go back to the way things were before, when you could eat whatever you wanted. We’ve all known for some time that eating healthier and taking the right vitamins for your body is good for our health in the long run, so actually putting that knowledge into action is really not THAT big of a mission to adopt. If I can do it, you can do it. I mean, I still crave pizzas (I’m not perfect! I’m not a fully fledged “eat right for your body” guru yet!)…I freakin’ love pizza and miss eating it…but hey…Give a new diet and vitamins a TRY at least! See how good you can feel too…you’ll love the difference, so it’s all worth it in the end xx

Reactive vs. Proactive

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My blog yesterday outlined my thought process when signs of my Crohn’s pop up. My first thought starts with panic, the second is reassurance, and then finally, putting strategies into action. I should’ve probably clarified that being ‘reactive’, in the sense of reacting quickly to do what’s necessary to get on top of these flare ups (being proactive to call your doctor(s), resting etc.) is a really good thing, but being EMOTIONALLY reactive is NOT a good thing.

Even though my thought process involves me reassuring myself that I’m going to be ok, I realised today that it ACTUALLY doesn’t help me REALLY feel ok. I may be saying all the right things to calm down so that I can think rationally through what my next steps need to be (which is great), but then after I put things into action, I don’t go back and address the initial emotional outburst. My reassuring words have not yet figured out how to convince my psyche that I’m ok.

So I went into hospital yesterday afternoon to start my Humira injections. I had an allergic reaction to the Infliximab (a medicinal infusion administered every 8 weeks in the hospital) a couple of weeks ago, so this treatment plan is the next option. It requires me to self-administer an injection every 2 weeks, for how ever long I need it, or until my body creates antibodies and rejects it.

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So basically, after having my freak out in the morning, making all the necessary appointments, I had convinced myself that I had done everything necessary that I could possible do for the day and that I was in control now. WRONG! Turned up at the hospital for my first lesson in Humira and how to inject myself, and clearly was still in panic mode. Luckily my gastro doctor (Dr. Alissa Walsh – super lovely!) was there at the IBD clinic in St. Vincent’s Hospital, and I told her my concerns with the symptoms I had. She had a look and said that the medicine in the injection should clear it up, so it was a good thing I was in today to start it all. Phew! I could now cancel my Thursday appointment with her since she just saw me, and she has given me the all clear. Sigh of relief… NOT GOOD ENOUGH! I didn’t realise that the anxiety that I had built up ALL morning would need MORE than the doctor’s prognosis as she looked up my butt. Even the nurse said I looked really anxious… she actually said to me “You look like you need a bowel prep!” – which means, I looked like I was constipated (gee, thanks!) because I was clearly straining my face with anxiousness. And then, the 4 injectons that were INCREDIBLY PAINFUL just tipped me over the anxiety edge. And I had a meltdown.

I tried to keep it hidden… I was holding back the tears as I was putting the little band-aid from the nurse over the injection site that was throbbing and already bruising my stomach… I picked up my bag and looked to the ground and kept my voice cheerful as the nurse explained that she wanted me to stay in the waiting room for another 30 minutes to make sure I didn’t have an allergic reaction. As I scuttled towards the waiting room, I made a detour to the toilet. Unfortunately, this unisex toilet was the only one available to the WHOLE waiting room, so I knew I wouldn’t be able to stay in there for long. And because of it’s close proximity to where people were sitting, I knew I couldn’t cry loudly. So I sat on the toilet, grabbed tissues and quietly sobbed, reminding myself to keep it together. After a fraction of time, I took a few deep breaths and emerged, back towards a chair in the waiting room. The nurse that had been with me helping with my injections spotted me all red eyed and sniffing and sweetly offered for me to move to another area so that I could have some privacy. She brought me tissues and sat with me and just talked me through it.

Crying made it feel soooo much better. I just needed a release! It was all just a bit too much for me today. Even though I had made all the right steps to ensuring that I would be checked over, I hadn’t nurtured the emotional side of my symptoms. I was trying so hard to be brave, to keep it together, but obviously that freak out and panic at the start of the day stayed with me until the afternoon when I finally cried about it all. It’s AMAZING how much emotions play a part in our well-being. Even if you say out loud (or even in your head) positive words of reassurance, if you don’t believe them, your body will manifest dis-ease (pun intended).

I haven’t tapped into the secret of how to reduce an initial emotional reaction, let alone how to release it quickly (except crying really does help), and I am hoping to learn! I’ve heard meditation aids in this process, but I am not yet at that stage of utilising it. If you know another method of how to NOT absorb emotion into your body so that you don’t get yourself into a state, please let me know.

What does help me emotionally process everything is by talking to my sister, who is the wisest person I know, and it helps too that she’s a psychologist…she knows what questions to ask and how to guide me out of a negative thought pattern or emotional state. If you have that someone who can help you process it all, whether it be a family member, a friend or a therapist (Crohn’s is known for causing the “Why Me?” mental anguish, so visiting a professional counsellor is encouraged) who you know won’t feel burdened from hearing it all, get the help you need from them. I also use acupuncture and energetic healing to help release the emotional contraction in my body. Yoga or your favourite exercise can help too, but for me, this is only a temporary release. Meditation and prayer would do wonders too, but I’m yet to master those as well.

Being PROACTIVE to your physical and emotional needs is important in dealing and healing with Crohn’s, but being REACTIVE is much more challenging to subdue. Being emotionally reactive is exhausting and traumatic on your body and mind, and I need to create a different thought process that STARTS with reassurance, rather than with panic. Or at least go back and make peace with the initial emotional thought. If you can help me figure this out, let me know… in the meantime, I’ll give my sister a buzz…

Food for your soul…and your Crohn’s

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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!

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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.

My recent relapse, and how I got through it…

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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