Monthly Archives: June 2014

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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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Fistulising Crohn’s Disease treatments

A good read about fistulising Crohn’s Disease and the treatment methods available including Infliximab, Humira and antibiotics. YAY winning combination!

However, a bit upset with the comment that perianal fistulae are a “disabling complication” of Crohn’s disease – true, it is… don’t want to be reminded of it… but then it mentions that this leads to a reduced quality of life… BOOOOOOOO!!!!!!!!!!!

Fuck you Crohn’s. Not going to let you reduce my quality of life!

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15 Pooping Horror Stories

A friend of mine who is also a “Crohn’sy” with a wicked sense of humour posted this on my Facebook page with a smiley face note saying “You’ll appreciate these”… And appreciate I did! I was laughing so hard (although, #1 was cringe worthy, definitely just skip to number 2 straight away!) I ironically almost pooped myself! But mainly, it was nice to see that with or without IBD, everyone has a pooping horror story! So if you’ve pooped yourself, sharted, dropped the kids off TOO early, liquooped – don’t be embarrassed. If anything, Crohn’s sufferers have the best stories to share – the life of every party! hahah

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Stimulation that you don’t want…

Caffeine isn’t so great for your guts if you’ve got Crohn’s Disease or any other inflammatory bowel disease… gives you the liquoops and makes things feel a little too intense in your midsection. This article outlines some issues associated with caffeine, especially causing a laxative effect and being quite acidic – doesn’t make your guts feel too good. What I found interesting is that caffeine increases your stress hormone levels which actually divert blood from your digestive system! Yikes!

For years I had noticed that caffeine and I didn’t get along – if I had black tea or a coffee, it would actually cause a red flushing of my face, which in Chinese medicine is called Liver Yang and relates to your liver function (under a lot of pressure from all my meds anyway), a leaky gut or digestive issue – BINGO! Ticking all boxes here! Caffeine would also stimulate me – and not in that “I-am-functioning-at-the speed-of-light” type of stimulation that gets you through the day and makes you uber efficient, but it would make me have the runs… Never a good option for someone with Crohn’s who already has pooping issues! Plus, people with bowel problems should avoid drinking anything with a diuretic effect at all costs, I mean, we are already not absorbing vitamins and other vital elements through our guts, do we want to add dehydration to the mix?

I’ve found this amazingly delicious herbal tea that makes you feel fabulous and gives you that wonderful warm fuzzy feeling inside called Husk that is caffeine free and organic. You can buy it at David Jones Food Hall in the City, at Thomas Dux in Paddington or online at http://www.husk.com.au (although, it’s more expensive online…go figure!). My favourite flavours are found in the following combinations:

1) Digest (Yes! They have designed a combo to make your guts feel great!): peppermint, licorice root and chamomile flowers
2) Revive (Yes! They have designed a combo to make me feel refreshed!): tea tree, lemon myrtle, lemongrass and apple.
3) Harmony (Yes! They have designed a combo to make me feel balanced!): cinnamon, lemon balm, rosehip, apples, cloves, ginger and cardamon.

You can also find their other combos called Calma and Dream which are also beautiful, but those above are my top 3 picks. A great warm drink alternative to coffee or black tea that is good for you. Make the transition slowly – I know stepping away from your cuppa coffee or tea fix is a challenge! If you’re feeling that caffeine is a bit too much for your guts to handle, then Husk may be your answer.

And in the meantime, if you too are experiencing red flushing in your face after consuming something that your body is not happy with, some things that can help reduce this is avoiding those trigger foods. Keep a food diary and keep track of what your body reacts to. Also, upping your water intake (I drink about 3 litres of water a day – the first week of increasing your water you will pee like a dog marking it’s territory every 15 seconds! But then slowly your body will get used to it and the frequency will decrease) will help eliminate any toxins in the liver. Eating ‘cooling’ foods such as cucumbers and pears will help as well. Check out this website for more details:
http://www.askanaturopath.com/faqs/facial-flushing/p/471

And of course, a visit to a Chinese herbalist or acupuncturist will do wonders as well. Enjoy keeping warm the RIGHT WAY this winter, not through face flushing or drinking caffeinated drinks xx

However, there is a boat-load of common knowledge that may be convincing enough for some to avoid caffeine if they are living with Crohn’s Disease. For example, it is a well known fact that caffeine produces a laxative effect, so if diarrhea is already a problem, this could worsen existing symptoms. Caffeine also elevates stress hormones and causes blood to be diverted from the stomach, which can worsen digestion. Caffeine is also highly acidic, and as a result, it may create stomach upset. And finally, caffeine acts as a diuretic which can lead to dehydration. Staying hydrated can be particularly important if you are living with Crohn’s Disease. – See more at: http://www.healthcentral.com/ibd/c/17824/42090/crohn-caffeine/#sthash.ubFrCYMK.dpuf
However, there is a boat-load of common knowledge that may be convincing enough for some to avoid caffeine if they are living with Crohn’s Disease. For example, it is a well known fact that caffeine produces a laxative effect, so if diarrhea is already a problem, this could worsen existing symptoms. Caffeine also elevates stress hormones and causes blood to be diverted from the stomach, which can worsen digestion. Caffeine is also highly acidic, and as a result, it may create stomach upset. And finally, caffeine acts as a diuretic which can lead to dehydration. Staying hydrated can be particularly important if you are living with Crohn’s Disease. – See more at: http://www.healthcentral.com/ibd/c/17824/42090/crohn-caffeine/#sthash.ubFrCYMK.dpuf
However, there is a boat-load of common knowledge that may be convincing enough for some to avoid caffeine if they are living with Crohn’s Disease. For example, it is a well known fact that caffeine produces a laxative effect, so if diarrhea is already a problem, this could worsen existing symptoms. Caffeine also elevates stress hormones and causes blood to be diverted from the stomach, which can worsen digestion. Caffeine is also highly acidic, and as a result, it may create stomach upset. And finally, caffeine acts as a diuretic which can lead to dehydration. Staying hydrated can be particularly important if you are living with Crohn’s Disease. – See more at: http://www.healthcentral.com/ibd/c/17824/42090/crohn-caffeine/#sthash.ubFrCYMK.dpuf

How a punch to my boob affected my guts…

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Funniest thing happened to me on Wednesday night – I play in a basketball team and I returned to the competition after being away for 4 months due to recent relapse. Feeling better and stronger to play, I went onto the court. Obviously I took it easy, didn’t push myself too far… but then I got punched in the boob! Super hard! A punch right into my left nipple! It felt like it should’ve bruised immediately, but it didn’t, and it was weird grasping at my boob and trying to massage it while I was still running around on the court. Anyway…life goes on…boob hurt for a the whole next day too. I’m talking super aching.

So I went to my acupuncturist today (every Friday evening I have a session to zen my week and to heal my EVERYTHING) and she asked me how I was going, how work was, whether I had returned to basketball…the usual friendly chat as I lay on the table relaxing, with some small needles shallowly puncturing my body… and I told her my funny story of being punched in the boob. She asked me if it still hurt and I said “sort of” so she started to do some resonance (an energetic healing technique – similar to reiki but on Chinese acupuncture points) over my left boob and said that she could feel that there was a blockage there. She then asked me if I had had any trouble with my stomach since then… I was like, OHMIGOD! YES! I’ve had the “liquoops ” (liquid poops – I coined this term to describe the “not-quite-diarrhea” stage) for the last two days, and it’s been really bizarre because I have been a pooping machine! Usually I just go twice a day, but the last 2 days I had gone 5 or 6 times in the day! She then explained to me that where I got hit, there is a energy channel that actually runs from the nipple through to the stomach channel (Chinese meridians) and that my boob bashing had interrupted the energy flow! I mean, any whack to the tit would fuck your energy flow, but this was totally awesome (in a “what a surprise!” kinda way) because it was an actual cause and effect situation. It was the only thing to explain why my pooping situation had changed since the hit.

She did some energetic healing for me for the area and I’m curious to see whether it’ll actually work tomorrow – will the pooping extravaganza subside? Hmmm….

Don’t get me wrong, I totally trust my acupuncturist, she is amazing! Her healing techniques really work for me…but so funny how she made the connection for me that I may have stomach issues based on my accident… this coincidence just seems to good to be true! Boob whack affecting stomach… my god I love energetic healing. I love how the body and the energy within us is all connected… time to get back to the healing!

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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.

The Humira Trap

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I’ve completed my first sets of Humira injections – the first set consisted of 4 injection pens that were SUPER painful that caused me to cry and bruise on my stomach at the puncture point. The second set was only with 2 injections, and I must say, having the injections out of the fridge really helped diminish the pain…for some reason, when it’s colder, it hurts more. I ain’t no doctor so I’m not sure of the explanation for this one. Anyway, now I am ready for my 1 injection, every 2 weeks. I’m due tomorrow to do it.

So the dilemma is, because my initial reaction to the injections was a mini breakdown in front of the nurse in the hospital, they enlisted me in a program that would provide me with support over the first 3 self-administered injections at my own home. What a fantastic program – they send out a nurse who is happy to assist me as I inject myself for 10 seconds, and they are just there to help me with any concerns I may have, in the privacy of my own home…for free. Initially, I was really excited about this program, considering that I am not as brave as I’d like to think I am, and having the support of a trained medical person in my home while I administer this large injection at any time that suits me, is a great feeling. FINALLY I don’t have to wait for the next available appointment at some obscure time…I don’t have to take time off work, worry about getting to an appointment on time, waiting way past my appointment time for my doctor who is running late… in the comfort of my home at my own time of convenience, a nurse will come to me.

But it’s the night before, and I’m kinda feeling, well, is there any point getting a nurse to come out all this way (she’ll be travelling for an hour to get to me!) to just supervise me inject myself, when I’ve done it 5 out of the 6 injections anyway? I feel like this is one big hassle. To be honest, I’d rather just inject myself in the morning before I go to work and get it over and done with, so I don’t have to think about it for the rest of the day, instead of waiting for the nurse to come to my place around 6pm when I get home from work. So I spoke to the nurse who has been assigned to me and told her that I’m feeling confident to do it on my own, and not to worry about coming over tomorrow. But it looks like my gastro doctor has enrolled me in a special version of the ‘home support’ program which states that I HAVE to have supervised visitations until I see the doctor again at the end of the month.

Now it just feels like a big bloody deal. In my mind I’ve simplified it to just a 10 second injection that I can get over and done with first thing in the morning before I start my day. But now it’s a 10 second injection that I need to have a nurse trek all the way over for to watch me do it after I come home from work (and clean up the house quickly so she doesn’t think I’m a slob). I feel trapped! Even though I’ve offered the nurse a way out, she’s not allowed to NOT come! She has strict instructions. Damn.

I think this is bothering me because it’s another feeling of burdening someone with my illness, despite the fact the nurse sounds lovely on the phone and really has no problem coming out to visit me (“It’s part of my job”). And I think it’s also just another reminder that this whole Crohn’s thing really needs lots of consideration and planning for. It needs supervision, not just by me, but by other medical personnel. And it’s another new treatment that I’ve got to follow through with. And it’s not as simple as just injecting yourself for 10 seconds with some miracle medicine – I’ll be self-administering every two week indefinitely.

Silver lining(s): I’m in the comfort of my own home getting treatment. I’m getting help for something that freaked me out a month ago. I’m receiving medicine that’s making me better. And I have a new nurse friend to make.

It could be worse xx

Some house rules…

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Living with Crohn’s requires some adjustments to your living situation – whether you live on your own or with someone, here are some tips and essential equipment that help me when I’m at home dealing with it all:

1. PLENTY of toilet paper! Always keep a massive stock on hand! And the softer the better… 3-ply or more is totally lush for your butt! Trust me, when you need to wipe regularly, especially poop of all textures, you want softness and absorbent toilet paper!

2. Wet wipes – keeps you fresh! I love Cottonelle Kleenex packs. They call them “cleansing cloths” to sound more fancy than wet wipes. I assume baby wipes would work the same magic. Makes you feel clean. You can get take-away small packs of 10 wipes…I have them tucked away in my handbag for out-and-about activities…just in case.

3. Keep the toilet lid UP! You have no idea, when you have the urge (a SERIOUS urge), taking the time to lift the lid, while simultaneously pulling down your pants is a bloody nuisance, and can make the difference between making it INTO the toilet bowl and not. It’s bad enough already that for some bizarre reason, when you need to go, the urge happens when you are about 5 minutes from your house, and then you have to begin speed walking to the front door (but not too fast, because then things could start coming out), so it’s some weird penguin waddle, while you hold your guts in…and then, you can’t get your bloody keys into the door lock (seriously, why the hell do you become an absolute SPAZ at opening doors at this point in time??!?!) and when you finally do make into the house, it’s a mad rush to make it to the loo. And that toilet lid is going to destroy you!!!

4. Chinese herbs – If you can go down to your local Chinese shop, get your hands on Po Chai Pills (sometimes labelled Bao Ji). These miracle vials of Chinese herb balls are SENSATIONAL! They help relieve diarrhea, nausea, bloating, over-eating, food poisoning, and help maintain healthy gut function. It’s basically a Chinese probiotic. Its ingredients include chrysanthemum and magnolia – these were the only Latin names that I recognised!! But it’s all natural, and the best part is, even if you take it, it won’t interfere with your other medication, and you can’t overdose on Chinese herbs! They just make you feel better. Easily swallowed with a swig of water.

Image5. Privacy – whether you have more than one bathroom in your place, or just have a rule that the other person you live with cannot be ANYWHERE near the bathroom while you are doing your business (my rule on holidays!), it’s important to feel comfortable and at ease when you are on the loo. With Crohn’s, doing a number 2 has it’s own set of anxieties – is it runny? will it come out? what noises will accompany it? will I get to the loo in time? will it be painful? will there be blood or pus to watch for? So knowing that someone else isn’t waiting for you to hurry up out of the toilet is a real relief. Some tips to disguise sounds and smells:
– drop toilet paper into the bowl to disguise that “plop” or “splash” sound
– flush on the first drop, it disguises the sound and the smell (the first one released is always the smelliest! It’s been there the longest!)
– use Aesops post-poo drops (yes these are a real thing, and totally disguise the smell, better than the old matchstick trick!)
– flush often when either straining or splashing
– run the tap or shower while pooping
Obviously be sensible when trying these sound and smell disguising tips – don’t clog your toilet with paper and don’t waste water!

Share what tips or must haves that you have at your house to make living with Crohn’s or IBD better… remember, sharing is caring!

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The embarrassment… Women’s Health Magazine

A friend of a friend who used to work for Women’s Health magazine approached me at the beginning of 2013 and asked whether she could write about my Crohn’s story. She wanted to use me because I was stable in remission, even CURED I had thought. I had bragged to a few people that my Crohn’s no longer existed within me – I believed this because I had no symptoms, I felt good (so good, I even stopped taking my medication), colonoscopies couldn’t find any Crohn’s in my body, blood tests looked positive, I had met some cool people in Bali who taught me how to heal myself with healthy food and water and how to use positive language to say “I HAD Crohn’s” (past tense), and was finally so convinced that I was so in tune with my body that if something did start to flare, I would know about it immediately and would be able to manage it.

So I agreed to do this article, and it was the first time I had ever openly talked about having Crohn’s. Writing the history of how it all began, my symptoms, my treatments and how far I had come was a huge breaking of the barrier I had put up to protect myself from the embarrassment of having a disease and feeling abnormal to begin with! While I typed up my story before hitting ‘send’ I began to sob uncontrollably – it was the release I had needed after years of keeping it all a secret. Don’t get me wrong, friends and family knew I had Crohn’s, but they didn’t know how much I actually suffered with it. They didn’t know the gory details of my symptoms, didn’t know how many operations I had, how I used to be in so much pain after a bowel movement… I hid it from everyone. My whole teenage life, my parents used to label me as a “horrible morning person” – I’d come down into the kitchen, scowling, not wanting to talk to anyone, moving away from them if they came over to touch or kiss me (I am a super affectionate person usually), snapping if someone was trying to talk to me – what they didn’t know is that the reason I behaved this way in the morning was because I was in such excruciating pain after having a bowel movement that I could barely stand, let alone sit, and I was trying so hard to hold myself together that even talking or smiling was a mission. And this went on for years. Even when I worked at a school in Macau, my colleagues thought it was cute that I brought a really soft pillow from home to sit on to help ‘prop’ me up at my desk. The truth was, I was in so much pain in the mornings that I couldn’t sit properly – I would have to have something soft to cushion my butt, or I would sit to the side, or sit with my leg crossed underneath me.

I’m not sure exactly why I didn’t tell people that I was suffering all that time – a combination of denial, not wanting people’s pity, not wanting to burden people or worry them, not wanting to deal with it by saying out loud that it hurt me – but it was tightly under wraps. And by the time this article was being created and I was being asked about my story, I felt like it was time to unveil the truth after 13 years of having Crohn’s. I wanted to help others who were suffering by finally sharing my story. I was happy for strangers to know what I was going through. But I still wasn’t comfortable with all my friends and family knowing that I had contributed to the article, so I only told a select few about it once I knew it was officially going ahead.

And the day I had finished writing my story and answering all the journalist’s questions via email, I wanted the first person to read it be my fiance (now hubby). But I told him he could only read it when I was out of the room (I was terrified to watch him read it!), so I went and had a shower, and started to cry. I cried and cried, releasing it all out of my system – nervous that he may be grossed out by me now, embarrassed that I had shared so much, and ashamed for being sick and that I may one day be a burden on him. And he read my story AND heard me crying in the bathroom, and before I knew it, he came into the shower with me and hugged me, and told me that it was all good. And it was – knowing that he accepted me for all my flaws AND my Crohn’s was the most wonderful feeling in the world, and it gave me strength and solidified my decision to contribute my Crohn’s story to the magazine, and essentially, the world.

And then 7 months later, it was edited and published in the November issue! I got to do an awesome photoshoot for it and feel like a model! It was a great day. I actually felt PROUD that I had “had” Crohn’s because it allowed me to share my story. And I was written about because I was a “success story”… I mean, the by-line to my story was my quote “There are no traces of it [Crohn’s] in my body now, which is extremely rare”…Pffttt… Look at how cocky I was!

And slowly but surely, people found the article. To be honest, I didn’t think people I knew would buy Women’s Health Magazine…I mean, surely, all of my girlfriends are still reading Cosmo? But nope, I was receiving phonecalls, emails and texts of people congratulating me and commenting that they had no idea what I was going through. I felt relief. People still loved me, and weren’t going to shun me. I can’t even explain the sensation – I can’t even explain why I was scared that I thought people wouldn’t want anything to do with me if they found out about my Crohn’s. Looking back now I realise how irrational that was, and how much EXTRA suffering I had gone through by keeping it a secret, and then having this build up of anxiety that if people found out that they would no longer accept me. But I guess that was my journey with processing my life with my Crohn’s.

So, why the embarrassment? After feeling so much pride, and then relief after the article was published… well… I got sick again. I not only had to deal with the physical and emotional trauma of having a relapse, but I felt this incredible sense of embarrassment and shame. I had finally shared my secret to the world under the pretense that I was speaking in hindsight, from a healed place, and then I had a relapse! What a fool I must have looked to everyone! Here I was telling the world, “Hey! I’m cured! Look at all the amazing things I did to get to this very rare circumstance of not having Crohn’s again! And I’m getting better everyday!” – Talk about commentator’s curse!

When I talk to family and friends about my embarrassment, they tell me not to feel that way, because it was all true for me at that time. They tell me that it gives other Crohn’s sufferers hope or that it helped extinguish the taboo factor of talking about it to the world. They remind me that through this article, I developed my own awareness of my condition, and that it was a necessary part of my own healing… and as much as I know what they are saying is true… I STILL cannot shake the feeling of being embarrassed by it all. It’s just…ugh…so annoying! I mean COME ON! I was just featured in a magazine about being HEALED of my Crohn’s and then 3 months later I am SICK with Crohn’s! It couldn’t be a more eye rolling moment! SERIOUSLY!

*Sigh*… Looking at the positives of this whole situation, I am now very comfortable about sharing my story of Crohn’s (obviously) and don’t feel like I need to hide symptoms from people – I mean, I’m not sharing EVERY detail, but if I’m having a bad day, or feel sick, or need help with something, or am in pain, I can let people know without feeling bad about it. So that’s a great thing. I don’t have to suffer in silence anymore. And the more I open up about my condition, I think this awareness and acknowledgement helps with my healing process.

So hopefully in time, I will be able to reconcile this feeling of embarrassment about publicising my Crohn’s “success” story in Women’s Health Magazine and then getting sick again… hopefully soon. Am in the process of creating a new success story for myself by following all my treatments and staying positive. It may not be a definitive cure, but it’s definitely getting me back on the right path to dealing and healing with Crohn’s.