The History of Crohn’s

Speaking of history, it’s been AGES since I last blogged – mainly because life has gotten in the way, which is a good thing (better than Crohn’s getting in the way!)

Last I left off I was having a meltdown about taking myself to hospital. I was subsequently inundated with messages of love and support as soon as I posted, which was a wonderful reminder to myself that I do not need to suffer on my own. It is so important to have a support network – whether people truly understand what I am going through or not, or whether they understand what Crohn’s is all about, what they do know is that during hard times, I need help, and they can be there for me. I must remember not to always try and put on a brave face – I did that for years hiding what I was going through, and this blog is here to free me of suffering alone and in silence.
So a major shout out to my buddy with the same name as mine… thank you for being there when I didn’t realise how much I really needed someone.

Anyway, back to the history of Crohn’s… a very interesting read (thanks to my sister from another mister and my brother-in-law for getting this article happening!) looking at where it all may have begun to where the awareness of Crohn’s is today. Be aware! And beware! Especially the part that says Crohn’s sufferers have a higher chance of getting bowel cancer. Pfffttt… as if it isn’t hard enough to deal with Crohn’s in the PRESENT to then also cope that somewhere in the FUTURE may be a whole other issue attached to it! *Sigh

Dealing and healing baby… will get there!

The Work – Life balance… with Crohns

I’m back at work after being away for 3 months. It’s been a good 3 days so far… easing back into all the work. As a teacher, being away feels really hard because your job is about investing yourself in others – I must say that the first few weeks that I was away sick in hospital, I was finding it hard to let go of work as I kept thinking that no-one can do what I do while I am away. Not trying to sound up myself or anything, it’s just a major attachment to your work and feeling like you understand your kids and know how to cater to them so that they learn. I am sure in other jobs that people invest a lot of time and energy into that it would feel similar, and that putting your trust into someone else to fulfill your duties and work to your standard is challenging.
But this feeling of “I need to go back to work – think of the children!’ really dissipated after about 3 weeks. Now that’s a BLOODY long time to let go! I kept wishing myself to get better quickly so that I could get back to work. And I soon realised that me wanting to rush this process of healing was really not a smart move. Luckily for me, the Vice-Principal was insistent that I take as much time off as possible – she told me not to think emotionally but to be rational – healing takes time. And even though my family and friends were telling me to “just take the time off!” “do it! you need to get better”, it was really hard. I KNEW that I needed the time, I knew I had surgeries to do, treatments to trial and doctors to see, but in those first 3 weeks I was fighting being sick. I didn’t want it, so I was pushing the reality away (in DENIAL AGAIN!!! See how much I hang out here?!) and was trying to convince myself that I was feeling better and stronger than I actually was.

Unless you are sick, no-one quite understands what it feels like. To feel like you can’t quite function like everyone else in the world is a horrible feeling. It’s a feeling of hopelessness and that vulnerability you feel makes you push yourself. And sometimes this is a good thing because it makes you proactive to get better, to deal with what needs to be dealt with… but sometimes it’s a bad thing because you push yourself before you are ready. Taking the time to heal is SO important, yet it is the hardest thing to admit to yourself.

For me, not being able to go to work, that is, do a job which people do on a daily basis, was just the extra confirmation that I didn’t want that I was sick. If I couldn’t function like everyone else, then I failed at life. I remember even crying in the car with my mum on the way from one doctor to go see another doctor and telling her that I felt like a failure. And she cried too and told me that I wasn’t, but I felt that way because all of a sudden being sick again meant that I couldn’t work, I couldn’t physically drive to my appointments because of the pain, and this dependence on everyone around me (“why can’t I depend on MYSELF??!?! How could I DO THIS to myself?!”) made me feel out of control. And that scared the shit out of me. Because I wasn’t “normal”.

There was clearly something wrong with me, because a month prior I was feeling fine, and now I was dealing with the Crohn’s again. It’s like this separate part of me that just gets in the way of me from time to time. And I think this separation of it from my being doesn’t help me deal with it. So I’ve had to start thinking about my Crohn’s (it’s now MY Crohn’s instead of THE Crohn’s) like a virus… it’s always in my body but it sometimes rears its ugly head… like herpes! It’s always there, and it’s a management issue. But this revelation of dealing with it as a part of me has only come recently, and it wouldn’t surprise me that as I ease back into remission, that I may revert to my old ways of dealing with it as a separate part of me… time will tell, and now that I have this blog, I have written it down to remind me where I cannot go back!

But anyway, back to work – after those first 3 weeks and letting go that I wasn’t going back to work, and dealing with that emotional situation, it was my acupuncturist who helped put things into perspective. As I was lying there, getting treatment, and started to cry that I felt like my sense of purpose (contributing to society by working as a teacher) was rattled, she told me that if I can’t work as a teacher, I will still find something that makes me feel like I am contributing to society. She reminded me that I am the type of person who won’t just sit back and do nothing, that if I cannot physically teach 5 days a week, I’ll find something else to do that’ll give me that same sense of purpose, and that I just have to forgive myself that it isn’t what I initially thought it would be… WOW! Did that give me strength! And then my best friend suggesting I write a blog… it all came together.

The universe delivered to me something that I could do, while away from my job, that would also give me a sense of purpose. And yes, I will not be making money off this blog, but it sure helped in the interim while I felt like a ‘failure’ because I couldn’t function like everyone else. And all of a sudden, taking time off work didn’t seem that scary or confronting anymore. I embraced it and got excited about healing myself. I had good sleeps whenever I felt tired, I had salt baths when I needed to heal the area, I could lie around in bed and deal with pain better, I could visit doctors without the anxiety of leaving work or returning back to work on time, I could get a massage when I felt better, do a yoga class when my strength returned, I could cook new foods while starting my new diet of eliminating everything I used to eat, I could write this blog… and then before I knew it, I was sooooo much better and healthier… and happier! I had allowed myself the time to get better… I wasn’t in a rush to get better, to force myself to pull it together before my body was REALLY ready to go back to life pre-relapse.

So if you are going through a relapse, I understand the emotions you feel. You do feel ashamed because you can’t control what’s happening in your body. You feel guilt because you feel like a burden on the people around you. You feel embarrassed because a month before you were bragging to everyone how well you felt. You feel anger that it’s out of your control. You feel fear because you don’t know if you will feel better soon. You feel depressed that you can’t participate in things happening around you (I missed a good friend’s 30th while I was in hospital and I felt so sad about it… and spending a weekend in hospital is a horrible feeling. Thank god I had wonderful friends and family visit me – get your support network around to your hospital! Call them and tell them you need them! It makes a world of difference).
These are the emotions that I definitely experience when I am sick. They’re horrible, and very foreign to me, as I consider myself a very optimistic person. It’s amazing that in an instant EVERYTHING about who I am can change! But it doesn’t last forever. These horrible emotions will pass, but you have to accept them first, be patient with them (go get acupuncture and energetic healing to help the process too!) and then those emotions will actually be your SAVING grace, because they will propel you to start being proactive and start the healing process. They are both a blessing and a curse.

So if you’re dealing with Crohn’s or any other auto-immune illness, you need to find a lot of TRUST. Trust yourself that your body knows how to get better again, and that it will. Trust that the people around you DO NOT feel like you are burdening them! Trust that the universe will deliver some other purpose or some other job that you can do that can best suit your life and lifestyle, if you cannot return to your ‘normal’ work. Trust that other people will be able to do the work for you while you take the time off that you need to get better. And trust that you’re going to get through it. You always do. It’s a cycle of relapse and remission. And I sure as hell love this remission bit!

A day and night out with Crohn’s…

I promise you can still have fun when you’re out and about and have Crohn’s Disease. You don’t have to hide away and shun yourself from socializing because you have an autoimmune disease. Going out while managing Crohn’s can make things difficult, down to toilet location/accessibility and menu choices, but there are definitely ways to get around these challenges. Here are some of my experiences:

Yesterday was my best friend’s 30th birthday party, and it was a great day! The birthday girl, being aware that there are a few of us in our circle of friends that have food intolerances, was very thoughtful in her selection of options for the banquet style lunch we experienced, which was so great, especially when struggling with a digestive disorder. If you get invited to go somewhere that you haven’t eaten before, you can always check out the menu online (thank god for the internet!) or even give the restaurant a call before the event and see what they serve or whether they provide alternative options to support your dietary needs. I mean, even recently I went to a Japanese restaurant with a girlfriend and brought my own tamari, which is gluten-free soy sauce. She didn’t care that I whipped it out of my handbag (she even asked to have some!), the restaurant didn’t seem to bat an eyelid about it, and I certainly wasn’t going to give a shit if people stared at me. Funnily enough, even though I told the waitress that I couldn’t eat gluten, I was still served a battered salmon dish, even though I asked for a grilled fish. I sent it back to the kitchen to get it rectified, and then it was fine. Don’t feel bullied to eat what they serve you if it’s not right! You feeling sick and in pain is not a good trade off for having a moment of being a little annoying to restaurant staff! Thank god (but sadly) we live in a time where food intolerances are abundant, so restaurants are used to being asked to change things on their menus. Just tell the wait staff before you order and they’ll make a note of it to pass on to the kitchen. So if you are invited out, you can choose to either decline the invitation (which is sad, because hanging out with people makes you feel good!) or you can suggest another dining venue that you know works with your needs (most people will understand this) or you can just choose to eat prior to meeting everyone, and then just order a small “Crohn’s friendly” snack to eat while socialising with people. Obviously if you are going through a bad relapse, or you’re in hospital, don’t force yourself to go out! Listen to your body and see what you really need.

Back to my day yesterday, the only thing I should’ve probably stayed away from at lunch was the caramelized pear served for dessert – I only took a spoonful of it because I knew the sugar in it would probably make my guts unhappy, but what was even more pleasantly surprising was that after I have been avoiding processed sugar, that one spoonful tasted SOOOO sweet, it was a bit too much anyway! This was a nice reminder that even though I am making dietary “sacrifices”, my body is happy with these choices. Anyway, for whatever reason (hopefully it wasn’t that pear spoonful! Because then I am REALLY sensitive to fruit), later on as the night progressed while celebrating, I had the “liquoops” – this is a term I have coined to describe liquid poops. It’s not quite as messy as diarrhea, in the sense that you can hold it in time to make it to the loo, but its not a formed poo and you still have to go a couple of times. I stupidly wore a body suit – let me tell you, that shit is difficult to manoeuvre off your body when you are trying to sit down on the toilet! If you have IBD and own a body suit, jumpsuit, overalls or any other type of clothing that requires time to remove it, DO NOT WEAR IT! My body suit was a bloody nuisance. Didn’t make any accidents luckily, but it does add to the anxiety! Because you never know what the toilet queue is going to be like (and women take so much time in the toilet! Super annoying). Speaking of accidents, it doesn’t hurt to keep a spare pair of pants in your car…I’ve learnt from experience!

Another thing that I did to help with my Crohn’s while I was out was I drank water the whole day. I can’t drink alcohol at the moment (or maybe for a long while…) because alcohol will really hurt my guts. It can be too acidic, it can also be too sugary, is too toxic for my liver while it’s processing other treatments, and plus, it doesn’t mix so well with medication. And I’m not talking about the fun and easy type of “drunk” you used to get as a teenager when you were on antibiotics and still decided to drink… as you get older, drinking while on antibiotics really hurts – cramping, nausea, bloating… it’s not worth it. I have no problem being the sober person at a party, mainly because my friends are awesome in every state, so I can have fun no matter what. If anything, I just get jealous or bored that I am not on their level of drunkeness, and then I secretly start craving a drink…but then I realize, it’s not worth it – no matter the celebration. Recently I have been at weddings and other 30ths and have not had a problem with not drinking. If people who don’t know me ask me why I’m not drinking, I just say I’m on antibiotics – it’s not a lie, as I AM on antibiotics, but it avoids sharing the whole back story to my Crohn’s life! Even yesterday at the bar, when I was with the birthday girl ordering her a mojito and asking for a glass of water for myself, the bartender even asked me why I wasn’t drinking! I just said I was the designated driver.
People will ask you at social gatherings why you aren’t drinking, but that’s cool, you’ve got very acceptable answers to give them such as “designated driver” or “being on antibiotics” without having to explain your situation. So don’t worry about being the odd one out! The people that matter don’t mind, and the people that mind don’t matter (cheers Dr. Seuss).

So go out and celebrate your life – enjoy the times when you are really well. Just be careful and mindful of what you put INTO your body (food and drink) and what you put ONTO your body (clothing), and stay close to the loo if needed!

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

Testing, testing, 1, 2, 3…

Yesterday, a friend of mine told me that they think they may have Crohn’s Disease after speaking with a doctor about their symptoms. She’s nervous about undergoing the necessary tests to confirm for sure, which is totally understandable. No-one likes to do blood tests, or collect their poo over a couple of days in little jars to send away. Or drinking barium (similar to drinking cement, and pooping out cement too!) to show contrast in an MRI scan to see where inflammation is.

And don’t even get me started about having a colonoscopy! Yeah sure, you are under General so you don’t feel them shoving a camera up your pooper, but for anyone who has ever done one of these tests, they know what I’m talking about when it comes to the preparation of a colonoscopy. Firstly, the day BEFORE the colonoscopy, you have to go on a clear liquids diet, which basically means you just drink water. You can’t have anything that is red or green in colouring (I think that these colours stain the colon and can confuse doctors as to what they are really looking at) or anything with sugar in it because sugar inflames the gut. Now, spending a whole day fasting from food and just drinking water doesn’t sound too bad – but it is because you do this while you have to drink this disgusting mixture called PicoPrep, which is just the fancy name for AGGRESSIVE LAXATIVE! You get given 3 of these sachets, including the timings of when to take them, which depends on when you are having your colonoscopy the next day – a morning colonoscopy requires you to finish the sachets the day before, and an afternoon colonoscopy likes you to spread the trauma of drinking one more sachet into the morning of the procedure. Now the first time you drink it, it doesn’t taste so bad… it has a lemony salty flavour to it… but it’s what it DOES to you that makes you HATE drinking it! I’m talking violent diarrhea (up to 30 times in the day! I’m sure there is some gross world record about how often you shit from your colonoscopy prep!), bloating, cramping, shooting pains through your guts… you feel exhausted from going to the bathroom so often, not to mention if you don’t have 3-ply toilet paper or more, your butt suffers! I will NEVER buy cheap toilet paper! I may go broke buying the 3000 count Egyptian cotton equivalent to toilet paper, but my god will it be worth it!
So after you feel like you’ve emptied every possible substance that exists in your body, and you go to bed hungry, crampy, exhausted and wishing never to see a toilet again (even though you may have to wake up in the middle of the night and still have to run to the loo), you wake up the day of your procedure and then have to fast completely from water for 6 hours before you go into hospital. And let me tell you, hospitals don’t trust anyone! Even if you’ve been there a million times to the point where the nurses and doctors are like, “Welcome back!” (they should give me a loyalty card… every 10th visit should be free!) they still will NOT take your word that you haven’t had anything to eat or drink since midnight, and will keep you waiting around for a couple more hours. By this stage, you are ready to shred the hospital staff’s faces off… I’ve actually gotten so worked up in hospitals before different surgeries or procedures because of being overtired, in pain, dehydrated and hungry (definitely I am a ‘HANGRY’ person) that I’ve abused staff, sobbed hysterically and have even been held down and sedated! Obviously in hindsight, that’s just a shitty thing to do to people who are working to help you, but hey, I’m human… meltdowns are part of my DNA. And to be fair, I haven’t had a tantrum in a hospital in a while (*cough* 3 months *cough*)… my bad.

Anyway, colonoscopies are seriously awful. I hate them. But at the end of the day, you need them! You need them so that you can know for sure what’s going on inside you. You need to know what needs fixing. The alternative is avoiding finding out what’s happening and having terrible pain, diarrhea, blood, constipation and feeling like your guts are going to explode from the inside. Having 2 days of fasting and horrible diarrhea isn’t REALLY that bad of a trade off. Complain how bloody awful they are (start a blog like this one!), bitch and moan to everyone about it… get it all out of your system because you just HAVE to do it. Just get on with it, deal with it, and get it done. It is better to know for sure what the state of your insides are so that you can start doing whatever is necessary to get better and to start healing.

Besides, you get to keep the pictures of your colon from the procedure as a souvenir! Who doesn’t want that? hahaha

Make a wish…

ImageI was just having a giggle in the bathroom while doing this, because for as long as I can remember, whenever I see a loose eyelash floating around my face, I pick it up, make a wish, and then blow it away! My wish is always the same “I wish I had no problems with my Crohn’s”. Don’t worry, I say it differently in my head when I actually make the wish, so my “wishing powers” will still come true, even though I’ve told you what I wished for!

Whether you believe in magic and that wishes do come true, or you are just superstitious, it’s fun having these little activities/habits or traditions. Because just being aware of your health is helpful in the healing process. It’s like regularly acknowledging that you are doing something to help with the healing. If it is magic or just you tapping into Rhonda Byrne’s ‘The Secret’, putting out a little positive energy with your words to the universe makes you feel great.

So whether it’s an eyelash, the first star you see tonight, or a lucky charm, have a play! It feels good to know that you’re trying everything out there that can contribute to the healing.

And remember, pampering yourself on those days that you don’t feel so good goes a long way too – get a facial, mani/pedi, massage, buy something new, sit out in the sun – whatever it might be, spoil yourself! Get the most out of feeling good and enjoy it… I’m off to get a massage! Xx