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!

An Inconvenient Truth

Yes, I, a 29 year old woman, wants her mummy. My mum who is away on holiday with my dad, I wish she were here. She is the ultimate “Everything will be ok” kind of person, that just being near her or hearing her voice makes you feel safe.

Today I am going back into hospital – 4 days ago I noticed a small abscess forming near my anus, a place where I have had an abscess before, and by Tuesday morning it had become a blister about the size of my pinky nail and everything around the area ached. The pressure behind it feels like you have a marble under your skin – you notice it when you walk or sit. Luckily I was able to squeeze in to see my surgeon that Tuesday morning at 11.30am, who declared at 11.45am that this was just a “niggle” (he didn’t want me to get upset and wanted to remind me that this was NOT a major setback, that this was just a minor situation) that needed to be cleaned out, and that he will replace the seton nearby as well. Let’s do it tomorrow! YAY!

I walked out of there feeling good. I would get this all under control in 24 hours! Sweet! I love it when it can be sorted quickly! Less time to think about it all. Not going to let this situation inconvenience the rest of my life and everything I have planned! Because by getting it done tomorrow, well, that means I can still go to that wedding I need to go to on Saturday, and thank god it’s still school holidays so I can recover for a couple more days after and do nothing, oh but I won’t be able to make my Wednesday night basketball game so I better let my team know, and thank goodness I have that acupuncture appointment on Thursday afternoon which will be great to help clear any general anaeasthetic that might still be lingering…

Oh shit! Who is going to take me into hospital at this short notice? Ehhhh, it’ll be fine, I will get my own way there! I call my husband, explain what’s going on and I can hear the awkwardness in his voice because I know he is super stressed and busy at the moment with work and he’s wondering how he is going to take the time off and I’m all like, “It’s cool! I’ll get a cab there, but you’ll have to pick me up” and I hear him literally exhale in relief that the option for him to go to work is still available.

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Crohnology

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.

 

Letting go of the ‘Shoulds’

First of all, I’d like to say thank GOD my acupuncturist is back from her holiday after 6 weeks… it’s like I feel like all is right with the world again. At least everything is right in MY world. She’s fabulous.

So while I was enjoying my Friday evening session today, I was reminiscing about the great advice she has given me over the years. Most recently, when I was off loading about all the crazy stuff that happens at my work, and how it should be like this, and how things shouldn’t be a certain way, and how I was going crazy there… and she simply responded to me

“You need to let go of the ‘shoulds’ in your life”

It was a re-awakening. And since then, I have been so much happier at work and at life. Letting go of the anger and frustration that was attached to the way things ‘should’ be left me with so much more time and energy to focus on what WAS in my control, and what was real.

So during my session, while I was talking about how things were going, I thanked her for this absolute gem of advice that she had given me earlier this year that had transformed my life. And of course she added that the emotion of “shoulds” are held in the large intestine. Bloody hell. Isn’t that totally awesome?

It made me think that if I can just get my emotions in a completely blissful state, could I eradicate so many health issues? I’ve read about emotions and their connection to diseases… hence the breakdown of “dis-ease” – being in a state on unease emotionally. Could be amazing!

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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Stress Head

Under a Lot of Stress

I went to a workshop with my Year 11 students last week to learn about stress management, and there I was in the back of the lecture room, shushing the students to be quiet so that I could hear what the lecturer was saying….

“Your body doesn’t know the difference between good stress and bad stress”…. OHMIGOD!

Ok, I kinda knew this already (as I was squeezing my squiggy stress ball!), but sometimes you need someone to say it out loud for you to go, oh shiiitttttt… It particularly worries me now because work has been particularly hectic lately, but in a good way – I got a mini promotion at work, and my work load has TREBLED, but it it the challenge I have been looking for. I’ve been working my butt, but I have actually been enjoying it.

But then in the workshop, they went through all the physiological responses your body goes through when it feels stressed, which included digestive issues and a lowered immune system. Great. Fantastic news for someone with an AUTOIMMUNE BOWEL DISEASE!

And I definitely have noticed the difference in my body lately – I feel more tired (at 7.30pm I am ready to go to bed!), feel a bit more mweh and agro in my moods, and swing from constipation one day, to having the runs the next. Am definitely also noticing that I look more bloated as well. I guess things aren’t digesting so well – mentally and physically!

 

So this workshop was perfectly timed as a reminder to shift everything back into perspective again – I really need to look after myself. Especially after I went super (stupidly) hardcore back at work after my big surgery (refer to my last post).

I think because stress just seems to be so inevitable in life, we all tend to neglect how it really will affect us. But it’s so true – your body reacts to all types of stress in the same way, and that’s not a good thing if you already have a weakened system. So I have to be more mindful of how to reduce the stress levels in my life. Here is a good link to look at stress causes and symptoms: http://www.helpguide.org/mental/stress_signs.htm

Here are some of the things I have actively started to do to manage the stress in my life:

1. I’ve written down and printed some inspirational quotes around my office to remind myself of what is important and what is real… #thanksDalaiLama
http://media-cache-ec0.pinimg.com/736x/a3/5e/22/a35e22f9e30fef9502345ef3e7b26152.jpg

2. Taking deep breaths when it feels like things are getting too much, sometimes even counting to 10…
3. Asking myself “Am I profoundly OK with this moment?” and then evaluating if whatever it is really is a big deal to me or not
4. Yoga. Om Shanti Shanti.
5. Watching mindless TV to switch off

I’m sure there are other wonderful things out there to reduce stress… I know that meditation should be high up on that list, but it’s not something that I am currently and consistently doing… even though I know I should. Actually, that should be number 6: Letting go of the “shoulds” in your life. That does help you detach as well. Keeps you from being emotionally invested in situations, which helps reduce stress and anxiety.

So what do you do to reduce stress in your life? Would love to hear other ways of looking after yourself to manage the big S-bomb in our lives! If stress can be managed, then we can all feel a lot happier and healthier.

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Not Your Average Super Hero

So I am currently lying on my couch feeling a little sorry for myself. After my weekend of complete rest and relaxation after my surgery on Friday, I went back to work this week. Now remember, I chucked a sickie on Friday with the “flu” so on Monday when I went in with my waddle walk, and sat down during all of my classes, I told everyone I pulled my groin over the weekend. I even had an elaborate story that I had slipped down some stairs and fell into the splits! Not too many people asked anyway because when you mention “groin injury” from the weekend…well…it just stops people asking questions without sounding like perverts!

Of course when I went back to work this week it was the most bullshit hectic week at work. I stayed back until 6.00pm everyday fixing up paperwork, planning lessons, teaching students, calling parents, organising excursions, issuing detentions, writing back to emails, having staff meetings, attending a literacy workshop, chasing up homework, marking work, arguing with teenage students, designing assessment tasks, completing mid-term reports for the Seniors AND commentated for the Sports Carnival (ok ok, you get the point, teaching is a bloody endless job!) and by Thursday, I was passed out in bed by 8pm, exhausted from the week that was not yet over! And then today, was like the straw that broke the camels back…I finally left work “early” at 4.30pm to “celebrate” my week out of surgery and wanted to go get a massage, and I got stuck in a massive traffic jam because of a 2 car pile up on the Anzac Bridge that left me in the car for almost an hour and a half before I got home. And then it dawned on me… why the hell did I do this to myself?

I am on the verge of tears but I’m just too tired to cry. I know there is no point regretting the week that has just been because I can’t change any of it now… but I realise that I went back to work AND had a crazy week because I think I wanted to prove something…prove something to myself. That I could do it. That I could be Superwoman. Yes, I could go have massive surgery AND return to work to be the busiest woman alive. [Read more…]

Water Works

I went through with my surgery yesterday, and I am feeling a lot better than expected. I can actually walk! Well, it’s more like a really slow shuffle waddle. But at least I’m not lying horizontally in agony! Still quite sore, but nothing that the weekend lying in bed and painkillers won’t fix!

After my last post (pre-surgery), I went to a yoga class which really helped calm me down. All that deep breathing and physical exercise helped remind me that my body is strong and my mind can be even stronger. It’s amazing how as you get older you freak out more about health and surgeries… I would’ve never have even thought twice about going in for surgery 5 years ago! The heaps of crying I did in the morning and the yoga class helped put things into perspective for me, and also put me in a bit of a zombie state (really should be a “zen” state) that I felt kind of this numbness and at ease about going into surgery. All that anxiety washed away!

What also helped was that within half an hour of me checking into the hospital, I was already being wheeled into surgery! Usually it’s another 2 hour wait from the time you sign in! Which just leaves you with too much time on your hands thinking about how hungry/thirsty you are, how much pain you are in etc. [Read more…]

The Calm before the Surgery Storm

Screw my last post about feeling calm about my operation day…we have lift off and I am freaking out! Actually, it’s more like sadness, an intense sadness… I woke up this morning and cried and mourned for the loss of my left labia today. The surgeon is going to remove the cavity from it which will involve an incision (and eventually a scar) of about 3-4 inches from the top of the labia to right underneath the vaginal opening.

And all of this dawned on me at 6.30am. I’ve known about this surgery for a couple of weeks now, but it’s like the realisation of what he was going to do, and the thought about how painful this surgery is going to be after the fact suddenly fell on me like a tonne of bricks. I feel utterly hopeless.

I’ve already imagined my confrontation with the surgeon today in the hospital, asking him to clarify EXACTLY what he is going to do, and whether he can do it another way! I’ve pictured me screaming at him “I DO NOT GIVE YOU MY CONSENT”, I’ve pictured myself ripping up that hospital document with the details of the surgery and storming off, and I’ve also imagined a version where I freak out at him and they sedate me and before I go into a ga-ga type of state, I beg my husband and my mum to “not let me go into the surgery”.

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Chucking a Sickie

I have surgery booked tomorrow, and I am surprisingly calm about it… mind you, I have been waking up at 5.30am for the past 2 days and having wildly crazy dreams, but surely that’s just a coincidence? Or maybe it’s the fact that I will have tomorrow off from work and potentially Monday and Tuesday off as well… I haven’t told work that I am going in for surgery though, I am just going to fake a flu. Less questions, less dramas to deal with. I’ve just been given a leadership position at school this term upon my return after 3 months away, so I don’t want to start ringing any alarm bells about my situation again. And fortunately for me, a lady who shares my office has been really sick with the flu (but still has been coming into school!) and all week I’ve been dropping comments like “Oh no, I think you’re getting me sick too!” or “You should stay home, I’m on immunosuppressants and if I get sick, it’ll be twice as bad!”…

I know this all sounds incredibly dishonest, and usually I advocate for the “you are the first priority – look after your health!” side regardless of what’s happening in your life, but I just want to get in and out of surgery and pray that I recover super quick so I can get back to normal.
In reality, I will be staying the night at the hospital to deal with the pain, all weekend I will be sleeping and dealing with the pain, and when Monday comes around, I probably still will not be able to walk. Then I’ll have to come up with some excuse around work about why I am hobbling around… it’s actually going to be really fucked now that I properly look at it… I probably should’ve told them I was going in for surgery.

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