Monthly Archives: July 2014

Fitness freak

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After sharing my recent bath time story to my surgeon on Tuesday, I am happy to say that he was impressed that my body is clearing itself. YAY!

Bad news is, he still wants to operate next week. BOO!

Basically what’s happened is where my first abscess was earlier this year, well, the cavity that held the abscess is still there. It has left a large, hardened, empty mass under my skin that is the size of a 20 cent piece. Anyway, that cavity needs to be removed now. The risk is that if it stays there, it could potentially fill up again to form a new abscess. Alternatively, I leave it, but deal with the fact that I have this bizarre growth that makes everything look asymmetrical down there. So I agreed with him about having it removed.
To be honest, the surgery didn’t need to be rushed anytime soon, but I was thinking about all my wonderful friends’ weddings coming up in the next couple of months, and I figure, the sooner I do the surgery, the sooner I’ll be up and running. Get it over and done with!
But then this week I noticed something – in my yoga class, I was holding poses longer, even trying some of the harder ones… I felt STRONGER… and then tonight at my basketball game, I played a whole 40 minute game without taking a break and felt good and wasn’t out of breath…I felt FITTER… and then as I was driving home from the game, it dawned on me that by going into surgery next week, I will be out of action for 3-4 weeks which means that I won’t feel this amazing strength in my body for another long while.
Now I know the positive is that the sooner I get the surgery done and out of the way, the better. I know that it’ll give me peace of mind, considering my emotional state around my health has been bloody all over the place! And it’ll mean I will be bouncing around and able to celebrate these amazing occasions coming up in the second half of the year.
But really, I just feel really bummed out about it all. This is the first time THIS YEAR that I have actually felt my body feel strong and fit. I forgot how good it felt to feel physically capable! It’s been so long since I’ve felt this good in my body, and I only noticed it this week when I was doing exercise. It feels so good to finally not tire out so easily, to not need to sit, or nap, or take it easy, or walk slowly….And now, I am going to lose that again because I have to go back to surgery.
I know my body will bounce back again, just like it did to get back to this point. The doctor says 4 weeks of no exercise, but it’s really more like 6 weeks before I can actually give exercise a proper try, so it’s really not that long to wait to be getting fit and strong again. And I know that the sooner I do this, the less at risk I am of something potentially going wrong again with the Crohn’s… but AAAARRRGGGGGHHHHHHHHHHHHHH!!!
I’m really tired of feeling good and then having to deal with not feeling good again. It’s really shit. It’s a bloody marathon having to keep up with all the ups and downs of chronic illness! It’s just one hurdle after another! (Are you loving my fitness puns, eh? ehhh??)
I know I’ll get through it, I always do… it just feels a little tougher when you can FEEL the difference in your body. But I guess I am blessed that I CAN feel this good, even with Crohn’s Disease. And for a long time, I did feel this good before because I was in remission. So it’s not like I am back at square one. It’s just fresher in my mind that I am going to miss feeling this good again for a while. But hey, there are worse things in the world than being immobile for a few weeks waiting for my body to recover! So if you have any suggestions of good TV viewing or book reading, let me know, as I will be residing on my couch for the next couple of weeks taking it really easy xx

My “bubble” bath…

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WARNING: Graphic and gross detail coming up.
The most fascinating and disgusting thing just happened to me while I was in the bath tub…last week I noticed another abscess forming down below, but this time it wasn’t internal (you know, hiding deep in the depths of my tissue, which is where it usually is). It was external, out in the open waving “Hi!” to me, reminding me that things aren’t quite right “yet” (magical word of optimism!). It looked like a large blister (size of my thumb) in terms of the shininess of the skin that stretched over it, the redness in the skin surrounding it, and when you touched it, it bounced under your finger tip, like a bubble would. It was getting progressively more and more painful and larger every day.
As you can imagine, all of last week I was in quite a state about it, but kept it together (BAHAHAHAHAH – laughing out loud hysterically) knowing that I was going to see my surgeon soon. Ok, to be honest, I did try to get an earlier appointment but it wasn’t possible – I mean, I knew I could hold out for a week, but at the same time, I was terrified that this thing had grown in such a short period of time!
Anyway, to “keep it together”, I started upping my salt baths again to twice a day, applied zinc cream to the area several times a day to act as a barrier and alternated with coconut oil. I prayed, I cried, took pain relief, went commando to let the area “breathe” and had this deep longing that I needed to get help ASAP. I was seriously a scatterbrain at work, doubling up on my work because I had forgotten that I had done it – seriously, ZERO presence! It just weighed in the back of my mind that I wasn’t in remission and it was happening all over again- the swelling, the pain… I started even waddling again because it was getting painful to walk and sit again. A total “FML” situation!
Anyway, I was just sitting in my super hot salt bath, and just as I pulled the plug out to get out, I looked between my legs and noticed that the abscess was starting to drain! The fragile layer of skin surrounding this “bubble” had broken and it was oozing pink- a combination of pus and blood in a steady stream that made these beautiful formations in the water – part of it floated and some of it resembled a softserve ice-cream formation just where I was sitting. It seriously was fascinating! And seriously gross!
I actually said out loud “UH OH!” from the utter shock of this observation, and then quickly had to tell my husband to stay out of the bathroom when he came over to ask what had happened – I didn’t want to gross him out, I could be grossed out for the both of us! For 20 minutes I just watched this abscess very slowly drain itself until it was just a small skin flap…it was a wonderfully joyous and scary situation. I seriously cannot believe that it happened!
I feel assured that I am seeing my surgeon tomorrow so not much else can go wrong between now and then (it’s bed time after all!) but I am also concerned- is there a fistula that fed this abscess? Or was it a random, self-contained situation? Is it a good thing that it burst? Holy shit, what was my body doing? Clearing itself? Did I just HEAL myself?
I have Googled lots of things since about draining abscesses (did you know the difference between a cyst, boil and abscess? I didn’t…until now…Boils and cysts are kinda the same thing, but an abscess is an infected cyst – cheers: http://www.healthsearchonline.com/cysts-abscesses-boils-differences/) and a lot of them encourage a hot bath or compress to help open it up… of course, I was just having salt baths because I was trying to heal the area, not realising that this was a method of it opening up. Anyway, I didn’t incise it myself, it happened naturally…for whatever reason. I’m anticipating that my surgeon won’t be too happy with this situation (I don’t blame him!) so I may still need surgery to find out the cause of it forming in the first place, and I am sure I will need more antibiotics to assist in its healing now that it has burst, because my generous dab of tea tree oil on the site after it opened is most likely not enough of an antiseptic!
What I do know is that I feel a lot better – physically and emotionally. I’m not in pain, and the fact that I don’t have this large growth poking out anymore is really a relief, but I will know more after I report back to my surgeon. Will update when i know more.

I’m calling bullshit on this one…

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Apparently 1 in 10 showers may contain bacteria that trigger Crohn’s Disease…

http://www.telegraph.co.uk/science/science-news/10986400/Could-bathroom-showers-trigger-Crohns-disease.html

WTF? I must say, I am really happy that there is a lot of research going on regarding Crohn’s disease and the potential threats and causes that influence flares or even diagnosis – but on the other hand, is there TOO much research going on? I mean, is it all necessary?
I know from my own experience that having too much information is overwhelming and in fact, left me feeling more confused than I have ever been about my health. For the first time in a long time, I felt disconnected from my own intuition of how my body was feeling because I had read so much, heard so much and spoken to so many doctors that eventually I couldn’t hear what my own body was telling me while my mind was whirling with trying to find the answers. And in some circumstances I started to fear things I was doing (or not doing) because I was worried that I could cause a flare up instantaneously!
So this article brings me back to that feeling – by publishing articles like this one that don’t necessarily have any conclusive evidence of a factual and causal link to Crohn’s, is media perpetuating a fear factor for Crohn’s sufferers?
So if you are feeling exceptionally vulnerable from a recent flare up, try and avoid reading articles like these, or at least take them with a grain of salt.
Because I sure as hell am not going to avoid showering!

Kinesiology – your body knows best…

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Last week I went to my first kinesiology session with my sister-in-law’s sister (find Erin through Facebook’s ‘Achieving Balance’). It’s taken me a week to process the whole experience and to also do some further research about it as a healing practice.

Kinesiology is a healing technique that tests your muscles that represent different parts of your body to essentially listen to what the body itself says it needs healing with. I was asked what my goal was for the session and I said that I was generally feeling confused about my health, that I felt like I had lost touch with my own instinct as to knowing what was right for me. So we put this sentiment into words so that my goal was written something like “to feel confident and stable about the decisions made regarding my health, especially on my own terms”. This profoundly resonated within me because I currently have so many doctors now that my dependence on their advice has become crucial, even though sometimes it conflicts with what I believe, or what other doctors that I trust have said. Sometimes having too much information can be a shit fight! And to no surprise, this issue with my doctors also came up this week!
Anyway, back to my first official kinesiology session – I was asked how my body’s response mechanisms work by holding up my arm and relaxing at the joints. She asks my body to show my “yes” and “no” responses by asking me to push against her finger – and seriously, there are times where I can not hold myself up against the touch of her finger! And it’s not like she is battling me with it, she is gently touching me, but my body is responding to her questions about my feelings, about my treatments and about my life experiences by either positively or negatively working against her touch. I did ask her whether my body could trick myself into responding a certain way, for example, I want my response to be something, thus, will my body adjust to match that response? But no, it didn’t work that way.

Consequently a lot of emotions surrounding anger and resentment came about – typical emotions that hold in the pelvic area (go figure!) so it doesn’t surprise me that I developed this fear of letting go… and I have Crohn’s in my rectum. Unbelievable. Her questions sometimes surprised me – emotional issues that I thought I had resolved physically manifested during my session: fights with family members, feeling used by friends and exhaustion and frustration with my own medical condition. Tears brimmed to the surface as floods of memories came over me in regards to her guided questions. This is how it looked:

Kinesiologist: “What feelings are coming up for you? Feelings of frustration? (slight push/touch of her finger against my arm, no movement) Anger? (slight push against my arm, arm starting to give way) Feelings of resentment?” (arm can no longer resist against her touch!). Ok, resentment. Resentment to self? (Arm stays strong) Resentment to others? (Arm gives way) Resentment to friends? (No movement) Resentment to family? (Arm gives way) Male? (No movement) Female? (Arm collapses). Ok, feelings of resentment towards female family member… let’s go through names…”

And then the process begins again. It’s like trial and error with the questioning, and the direction it goes in depends on my body’s own responses, NOT my own verbal responses. And sometimes I don’t even know why my body is responding in a certain way, but we just have to balance the energy.

After we figured out how my body is feeling, she asked me to think of the incidents that I could recall that were associated with resentment and imagine me blowing up a balloon (I imagined it to be green) and blowing all the incidents into this balloon and then visualizing the balloon being removed from me. I imagined it just floating away. The next balloon was for disgust (and it was blue in my mind), and I visualized myself blowing it up really big, tying it up, and then grabbing a pin to burst it. She also asked me to visualize the energy around my pelvis (I imagined it to be orange) and picture it moving around and permeating my colon and rectum to allow it to heal. After the session I felt much lighter, and much happier, knowing that my body and it’s muscle memory had released negative energy that I had been unknowingly holding onto!

Crazy thing is, I got home and was curious as to why these very specific colours (which aren’t even my favourite colours, so it’s not like they were the first to come to mind!) came to me when I was visualising healing and emotions. So I looked at what the colours meant according to the chakras and WOW! Were they spot on! Orange represents the colour found in the sacral chakra (I swear I did NOT know this before I had started my session!) and this chakra is in the PELVIC REGION!!!! The green colour represents my heart chakra, which makes sense considering it was the feeling of letting people down, and sadness that people were no longer in my life, and the blue colour represents my throat chakra, which also makes sense because it is about expressing myself and letting go of humiliation.
A really fantastic session – it’s low impact, which is perfect for anyone not feeling well, because you just lie there and your body does the talking for you! It is definitely worth doing a kinesiology session, even if you are a bit skeptical, you cannot deny how your body physically reacts to certain questions! It’s quite funny to see how all of a sudden you are superbly weak against someone’s finger!

To learn more about the chakras, look here http://threeheartscompany.com/chakra.html
And any additional information you need about kinesiology, check out ‘Achieving Balance’:
https://www.facebook.com/pages/Achieving-Balance/681279311908722?ref=br_tf

and this website generally about kinesiology is also very helpful:
http://www.bodyandsoul.com.au/health/natural+health/is+kinesiology+for+mer,12053

Doctors and Drama!

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I woke up this morning at 6.30am and my mind was racing. All of a sudden I was a heap in the bed, curled up and crying. I tried opening my mouth to scream and nothing came out, all I could feel was a tightening in my throat – as if I was slightly embarrassed to let it out, but also that my body wouldn’t comply. I’m not in any physical pain, but I am in a heap of emotional pain.

I went to one of my doctors yesterday (the one who has been monitoring my diet and has put me on a large collection of supplements for a treatment) and I have been feeling amazing on her treatment, and my blood work also is showing positive results. YAY! But it’s what she said to me yesterday that has got me tipping over the edge: she said “I’ve seen people become relaxed with their diet because they have been feeling so good, but you won’t be able to do it. It would be DISASTROUS, and the body just never seems to be able to recover”. I asked “Why is that?” and she said “I don’t know, it’s just too shocking for the body, and you can’t return to this kind of treatment afterwards”. TALK ABOUT DRAMATISING EVERYTHING!

What pissed me off more is the things I SHOULD’VE said back to her when she said this, especially after I had my mantra of “clarity” yesterday. I have to give myself props though, because I did have the clarity to ask her about the sustainability of this treatment and told her it was very expensive for me – it’s like I hit a quota of clarity just by saying that, which explains why I wasn’t able to call her on her bullshit. I should’ve said “You can’t have me fearing the food I eat!!!” which had actually started happening recently – I was shit scared that something I ate would get me sick again! Thank god for acupuncture that helped relieve that anxiety!

The second thing I should’ve said to her was that I once was eating everything: dairy, wheat, sugar, junk food – really crappy food for 14 years when I had Crohn’s, and the relapses weren’t THAT immediate or horrific from my diet. So surely eating a fucking SALAD (I’m not supposed to eat raw food) isn’t going to be the worse thing for me! ARGHHHHH! My body will recover…it always does. It has already happily adapted to this super strict diet, so it will do it again if necessary! I can’t be scared to eat a little something that is off the diet, I mean, what if I go to someone’s house and they’ve accidentally cooked something for me with butter in it? It CAN’T be the end of the world! I get that she wants me to be strong and look after myself, and I know that diet is the KEY to keeping me feeling good and keeping my symptoms at bay. But the drama around it is just so FULL ON! I’m not into doctor’s that make you feel scared! Don’t they realise that you put so much trust in them? I am putting my health (and what it feels like, my life) into their hands, and then they make these statements as if they forget that I am human! I mean, if God can forgive us for our sins, surely our bloody doctors can too!

Another thing that pissed me off this morning was thinking about my surgeon. All of a sudden, setons do NOT make sense to me! I know they are there to clear out abscesses and fistulas, but how long is TOO long that they stay in there and perhaps interfere with the healing process?
The only thing I can relate tissue repair to is getting a piercing – the skin that is pierced doesn’t grow back, but instead, the scar tissue forms around the pin which creates a opening/hole to put an earring through. Well, setons are keeping a fistula open so that it clears out right? So isn’t my body now forming a hardened scar tissue AROUND the setons? Isn’t this going to cause complications down the track when they are removed but I have a ‘tunnel’ inside? I had a feeling this was happening a few months ago and I spoke to my doctors about it, but they brushed it off. Now they are FINALLY acknowledging that in one area where I have a seton, there is a hardening of scar tissue that is forming a shell, and my surgeon now wants to cut it out! ARGHHHHHHHH!!! I KNEW IT!

So yeah…that was my meltdown before 8am! Absolutely ridiculous! It’s amazing how one day I can be so strong and the next I can be so weak – funny that, Crohn’s symptoms are like that too! My emotional system is mimicking the physical system. But I must say, having an awesomely large cry really helped. And writing this blog helped too. GET IT OUT OF YOUR SYSTEM! Do what you need to do to get that “overwhelmed” feeling away from you!

And overall, I did have some “clarity” – to trust my gut. Ironic, I know, considering my guts are what got me here in the first place, but trust myself and my body. This was another learning experience that I really need to be true to myself and really communicate better with my doctors about my body and it’s needs. I have to be more ASSERTIVE and more confident with telling them EXACTLY what my body is doing. I know that ultimately their intention is to heal me (which I am grateful for), and that they want me to succeed on their treatment that they have seen work on a lot of people, but really, every single person is unique, and my body sometimes responds differently, and I need them to trust ME that I know what I’m talking about when dealing and healing with my Crohn’s.

Injecting a little emotion into my day…

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Just gave myself my Humira injection for the fortnight. It’s a really strange sensation injecting yourself… for some reason I feel like I should have someone with me when I do it. It’s not that I am not sure how to do it and need to be “spotted”, it’s just that for me, there is sort of this lonely feeling of doing it, like I am medicating myself all on my own. Super strange, considering I take my own meds without anyone needing to be around me (in fact, I prefer to do it privately anyway!), but stabbing a needle into your belly just seems a little more invasive, thus a little more “real” that there are things not quite right with your body. I mean, we can take tablets for anything and everything really – you got a bad headache, take a Panadol… take vitamins if you have a cold – so taking medication isn’t too far of a stretch from the norm. But when I’m puncturing myself to administer medication into my blood stream, it is a little full on.

I must say, the injections have become much easier to do – leaving them out of the fridge the night before and it’s easily accepted…it’s a whole 20 second procedure really, of wiping your belly with an alcohol swab, pinching your skin/flab, lining up the needle/pen to 90 degrees to your belly, and then pressing the button down which stabs the needle into you, and then you count to 10 while you wait for the plunger to go all the way down. And that’s it. Simple. Still a bit painful, but not ridiculous like the first time. I guess it doesn’t help when the injection site looks like this a few hours after it’s done!humirawelt1

Anyone else feel weird about injecting themselves alone? Is it something that I will get used to? Or should I just get my husband to sit with me while I do it? Maybe I need to figure out what it is that really bothers me or that makes me feel sad about doing it. It might be that it’s a new treatment that I’m not used to yet. Or maybe it’s because it makes the whole healing with Crohn’s process seem really real and severe. And even though this is a perfect treatment for me who likes to be in control of my healing (what is more controlling than shoving a needle into your tummy?), I guess emotionally I am still not so ok with it yet.

Yet, yet, yet, yet, yet… the magical word of optimism. I’ll get there…soon…

Clarity, Strength and Healing.

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While I was doing a head stand in yoga class today, these 3 words “Clarity, Strength and Healing” came to mind – now I know my mind should be clear during my yoga practice, but I welcomed these words as being the new mantra that I need to focus on. After all, it did come to me while I was hanging upside down…clearly it was a message from my inner depths after an hour of blissful and intense yoga that my body and mind needed me to know. So here I go, listening to my body (as we all should, so that we may know what is really best for us), and understanding what it all means, and what my intentions have to be:

Clarity: Be clear about what I need to do to stay healthy – balance of medication, surgery, supplements and diet. Be clear with my communication with my doctors about what I want for my healing process too, on my terms, not only on theirs.

Strength: Gain strength emotionally and physically. Be strong in moving forward and confidently dealing with it all.

Healing: Heal from within. Look after myself through my clarity and strength, and the healing will continue happening. I am currently healing. I am currently healthy.

Om Shanti Shanti Shanti xx

Quinoa…more like Quin-WAH!

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

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

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

http://health.usnews.com/health-news/blogs/eat-run/2012/09/18/what-your-poo-says-about-you

http://www.prevention.com/health/health-concerns/7-things-your-poop-says-about-you?s=1

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

Poop like a champion!

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I-Pooped-Today!
(Image from spreadshirt.com – imagine having this on a t-shirt that you walked around in?!)

This amazing blog from my friend Kate Callaghan is superb! Not only does she give great, practical advice on how to eat and live well (“Eat the rainbow”!), she has blogged about unclogging your bogging!

Constipation is seriously the WORST! It’s not even about not pooping for a day, but includes not having that full bowel motion so you feel emptied. Crohn’s disease is annoying in the sense that you can have anything from the liquoops to diarrhea one day, and then be constipated the next!

It happened to me today – went to the loo, did a little poo, and now I feel clogged, not knowing what to do (poetry genius!). So I drank two cups of my Husk ‘Digest’ tea, which helped things move some more, but I still didn’t feel that awesome satisfaction you get from having a proper poo. So I decided to go to a yoga class, and started to feel cramping on the left side of my abdomen and I knew it was the rest of the poo stuck! A couple of stretches, bends and massaging the area, I eventually asked the yoga teacher when we were in the downtime period of the class (you know, the one where they say, “Do an inversion- a back bend or a head stand, OR you can just lie down and close your eyes” and everyone chooses to sleep…) what I could do to help “unblock” myself (I have no qualms talking about being constipated, clearly!). Anyway, she instructed me to massage some points near the elbow bend and to lie with my legs up the wall with a blanket propped up under my behind. After 10 minutes of blissing out in this position, the cramping on the left hand side started to get worse and I could feel my abdomen swell up and bloat. Poor little tum tum. But soon after that I drove home, and pooped like a champion! WAHOO!!! Now THAT’S the satisfaction I am talking about, when you literally want to skip out of the toilet with the biggest smile on your face! Pooping used to be scary and painful for me, but now it is like a dream – and I seriously cannot enjoy the rest of my day if I know I haven’t done a proper poop, because all I end up doing is thinking about pooping. My husband will even vouch for me that I am not comfortable leaving the house for the day until pooping has been done properly!

Anyway, Kate’s blog http://www.againstthegrainnutrition.blogspot.com.au/2014/07/21-ways-to-relieve-constipation.html has 21 ways to help you relieve constipation. I also find that magnesium tablets also help, so that could be #22. What are your tips to allow a good poo to happen?

Happy pooping everybody! Better out than in!

A toke(n) of my appreciation…

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treatmentsopularFound this (not very clear) infographic from the 23andme website (http://blog.23andme.com/23andme-research/what-patients-say-works-for-crohns-disease/) which was conducted by Cure Together which looks at treatments that Crohn’s patients have found have worked for them. They did a study over 4 years talking to several hundred Crohn’s patients and asked them from their own personal experiences which treatments worked for them. Looking at a variety of therapies from east to west, and from popularity and effectiveness, it was interesting to look at the top listed findings.

Number one was LDN (Low dose Naltrexone) which surprised me because when I had my recent relapse, I asked several gastro doctors about it and they weren’t too supportive of it – said there was no conclusive evidence that it worked. Hmmmm….Included in the list of the top 10 most effective treatments were surgery, steroids, Remicade and Humira (no surprise here) and even gluten-free and Paleo diets.

But what was also found in the top 10 was the use of Cannabis. Even though it’s widely known that smoking is really bad for Crohn’s (but good for ulcerative colitis patients!?!), it’s not exactly clear whether it is the actual smoke that is being inhaled that is the problem, or whether it’s the chemicals found in cigarettes that cause the damage. Either way, it is interesting to see the studies continue regarding the use of cannabis for medicinal purposes, especially for Crohn’s patients.

I mean, look what I found… just going to leave it here for your reading pleasure…
http://blog.sfgate.com/smellthetruth/2013/05/14/smoking-marijuana-cured-crohns-disease-with-no-side-effects-new-study-shows/

Interesting to see what patients find to be helpful in their Crohn’s treatment, maybe even contrary to doctors’ opinions. I guess trial and error is a good practice when things flare up and you need to try something new. I know that acupuncture and energetic healing have been really good for me to manage pain, my immune system and stress reduction, which helps me deal and heal with my Crohn’s.

Have there been any kinds of treatments that have worked for you that perhaps are a little off the norm? Share your thoughts.