Face-Palm Miscommunications

Having had Inflammatory Bowel Disease for 20 years as of this coming November, diet is always a massive obstacle and an ever-changing part of disease management. 

Over the years, giving my intestines a break by having clear or full fluids only for a few days is pretty common. During every flare-up, I immediately cut out most foods. Usually I'll start by dropping to soft foods, then full fluids if there is no improvement in symptoms, then clear fluids if that still doesn't work. Then, over the following weeks, I will slowly begin to try foods from the next category up. If it works, I try again the next day. If it doesn't, I go back down. 

It is a constant battle. 

My Crohn's has been quite unruly lately. The symptoms are not as severe as when I was in my teens, but the discomfort and bathroom issues are very similar. 

Over the past several years, once I drop down to eating bread and rice for a few days, things tend to settle down. In fact, for plain rice to cause a problem is pretty rare. Alas, this time rice isn't quite doing the trick. Luckily for me, full fluids are. 

When I go on full fluids, that usually means Boost, popsicles, yogurt, pudding, ice cream, smoothies (sometimes), soup (sometimes), and cheese. 

Boost is (and has been) a staple in my kitchen since I was 14 years old. There is only one flavour I like (and an additional one I will stomach if necessary), so the Original Chocolate Boost is a classic go-to, and is fairly well documented in my chart. 

Well, my GI's office called recently. I was supposed to have my annual checkup in the coming weeks, but with everything going on, it can't happen. It is what I was expecting, of course. With decent bloodwork, and no symptoms of blood or incontinence, it means that it is still manageable, however uncomfortable. I did mention that it has been acting up over the past few months, but that it did not seem to be urgent. When she asked me what has been going on, I explained that the only foods I have been able to manage without much pain are Boost and some other fluids. Everything else is causing discomfort, and a lot of it. 

That's when she said something odd, but that I didn't quite pick up on until a few days later. When I said:

"All my body seems to be able to handle is Boost and full fluids. Everything else hurts"

She said: 

*laughing* "Well of course everything else hurts, you're essentially sterilizing your intestines." 

At the time I thought she meant that because I was taking in such little variety of food, that I was kind of cleaned out. 

Days later it dawned on me.... She thought I kept saying BOOZE and not BOOST. 🤦‍♀️

So the receptionist at my GI's office now thinks that I am drinking alcohol most days to help with a long-term flare that has already lasted a few months. 

Oh boy. 

Although, with them being so busy on the front lines of this pandemic, that conversation may have been forgotten shortly thereafter. Otherwise I will have some explaining to do at my next appointment with him. 

Boost. 

Boost is what I drink when my Crohn's and Pouchitis are acting up. 

Not booze. 

Boost. 

Ugh. 

Yoga for Instagram

My activities over the past few years have dwindled to a few. Trust me, I am ecstatic that I can still paddle and practice yoga, but those are my main sources of exercise. 

This blog and how I share this blog has a lot to do with Instagram. On IG, though, sharing pictures is the main focus, so I share photos of me practicing yoga. 

Now, before you turn away all eye-roll-like, my yoga photos are not what you would picture on the 'gram. I do not have a professional camera, for one. What I do have is a smart-phone with a fairly impressive camera. 

I do not take photos of every single time I practice yoga. I take photos every couple of weeks, and then share one photo a day. It isn't some glamorous event... I usually fiddle with trying to find decent lighting, pick out an outfit that allows me to practice comfortably while getting some decent shots, and then propping my phone up on a book, a shelf, or on board games teetering on a shelf trying to get the best vantage point. It is all a little bit ridiculous. 

The best part, though, is the actual taking of the photos. See, my phone sits on a shelf, pointed at my yoga mat while I practice. I use a voice command to take these photos... which means that I practice yoga and randomly shout "CAPTURE" or "SMILE" when I have reached the calm moment in a pose. Of course, it doesn't work every single time, so you might hear me shout the same word over and over trying to catch a picture before I become too flustered and move out of a particular pose.... which was meant to provide some serenity. 

Which is partially contradictory... to give up the calm to try and capture a photo.... 

But that is also precisely why I never shoot video of my practice. I need those privately calm moments, without the camera. 

Yoga is for me... although when I am stressing about getting decent photos, it doesn't always feel that way. Trying to take these photos, however, does provide me with some much-needed motivation and structure. When I feel especially ill, yoga is the last thing I want to do. For instance, for the past 2 weeks, even leaving the bedroom has been a major difficulty. My energy levels and overall flare-up has had me on non-stop resting mode. Yoga can actually help me during these times if it doesn't deplete my energy to irreversible levels. Knowing that I was running out of pictures helped motivate me to practice even when I was not feeling entirely up to it. 

Alright, anyways, what's more is that I do not have this picture-perfect practice. I am not a yoga instructor. I do not attend yoga classes anymore. I practice at home. Some of the most basic poses are far too painful for my body. Even transitioning between poses is less of a 'flow' and more of a 'stop-and-start' with jerky, unbalanced, often comical movements. 

There are lots of photos I do not share - photos where I lose my balance, where I am just lying on the floor waiting for my body to allow me enough energy to continue, and even photos where I think I am perfectly in a pose but really I am not even close. 

I find this mostly when I 'think' my back is straight or even arched. Trying to get into Crescent pose is highly difficult and even painful most of the time. I still gently try - because I want to keep my spine strong and as flexible as possible - but the photos themselves show a very subpar level of practice. Downward Dog is another pose I rarely even attempt anymore because of my shoulder blade pain, but as you can see below, I am not even close to getting it right. I even went on my tippy-toes with partially bent knees in an attempt to help me straighten out my back. 

The saddest part is that I thought I had it. 

Nope. 

Still a curved spine. 

Now, logically I know that my spine curvature at the top is the progression of the disease (Ankylosing Spondylitis), but I still seem to hold out hope that I can stretch my way back to a better posture. 

I might be out to lunch. 

Yoga on Instagram often looks poised, serene, relaxed, mixed with perfect photography skills. 

Not on my page. 

My page is filled with repeating poses, attempts at halfway decent photos, and an entire array of silent moments off the screen that make up the bulk of my personal practice. 

Here are some of the misfit poses and photos that I rarely share - to show that the 'gram only shows a small fraction of what is really behind the scenes.

Yoga is supposed to be an intensely personal experience. My practice is tailored to my specific needs and level of strength and flexibility. I am always working on improving my skills without causing more pain. I have SO much I need to work on - breath, flexibility, strength, technique, meditation, etc... - but it is a practice all my very own. No matter what, that is a beautiful thing and I am happy to share my imperfect practice.  

We Be Flarin'

Over the past few days I have been feeling  excessively drained. Unusually drained.
It is true that I have been wearing myself out more than usual, but the type of drain I have been feeling had me a little concerned.
I got my answer today!
In blood (muahaha).

I am a little relieved because it isn't anything I have not dealt with before.
Relieved is not the term one would expect to feel when seeing blood, but it entirely explains the depth of drain that I have been feeling. It makes more sense.

So I am experiencing a Crohn's flare.
(Actually it is probably more of a Pouchitis flare but I hate calling it that because Chronic Pouchitis sounds like a made-up disease. It's not - it is ulcerative colitis without the colon: inflammation of the J-pouch - but Crohn's flare just makes more sense to most people and it is essentially the same symptoms).

It could be from activity. It could be from the arugula I just bought (which would be a piss off because I actually really love arugula). It could be from getting myself rundown. It could be a different food or trigger of which I do not know.

What I DO know - what I am fairly certain about - is that it is not serious enough to get worried. I have some pain (hello, duh! Your intestines are injured enough to be bleeding!), and I am pretty weak, but I also know that a few days of rest, maybe a full fluid diet for a couple days, and maybe some cortifoam, and I will be back to my usual intestinal pain within a few days.

Blood=relief.

What a strange strange life this patient life is!

Sleepless Night - Again

There is a bright side to experiencing a night without sleep.

There are a few things going on: I have a major j-pouch flare-up, I have been using Cortifoam, and I have had an extremely difficult time eating and getting the nutrition that I require. I also that I cannot absorb the nutrition that my body requires.
Yesterday, the cortifoam had improved my symptoms later on in the day, which made it easier for me to eat. In a way, this is a really great thing. My shakiness and weakness were both improved after having a good meal, and I had more energy from the protein I managed to keep down. With fewer bathroom breaks I am certain that more nutrients absorbed.
This is really important.

Unfortunately, it also means that the food was bound to result in severe stomach pains and intestinal cramping. These pains were not severe enough for emergency treatment or anything, but they did manage to keep me up all night, rocking back and forth on the bed in the guest room as to not keep Rj awake (or make him vomit from motion sickness - the bed was basically a boat while I was rocking for hours on end).
It isn't that I wasn't tired, and it wasn't insomnia, it was simply pain and discomfort that I experienced because I ate a healthy amount of food yesterday.

Kind of a downer.
And yet it also means that the Cortifoam worked well enough to allow me to eat - to get past the immediate pains and urgency and nausea in order to absorb some nutrients.
That makes it worth it.
So the majority of the day today will be spent sleeping... hopefully... and if you see me, don't be alarmed if I have a zombie-like appearance -> in the way I look, move, walk, and even talk.

Hooray for Zombie days!

Good Food

Good food is a relative term.

Good food has a different definition for everyone. Of course, food like deep fried anything or soda pops can't exactly claim to be 'good' food, so there are some universal truths there, but good food can mean a lot of different things.

Right now, my Pouchitis (the chronic inflammation of the J-Pouch that was created with my small intestine when my ileostomy was reversed) is flared up. It is flared because I am not allowed to be on my antibiotics right now, because I cannot be on them for the cortisone injections into my joints. (There are always so many rules!).
Have you ever been in the midst of eating something, then go to the washroom and that exact food you're eating has already passed through your system??
That's one of the many possible variations if symptoms someone with any kind of Inflammatory Bowel Disease can suffer from. Undigested food. I think my record is about 10 minutes. You may shake your head and say that that's impossible, but it's not. It's even in my medical records that during several barium swallow diagnostic tests, the time it took for the barium to go through my system (which *should* have taken about an hour or more) was between 10-30 minutes -> several different times.
But here is some extra confusion.
My Crohn's Disease, which essentially affects anywhere in my intestines above the J-Pouch has different symptoms if it is flared. With my Crohn's, the pain from trying to digest food usually starts within about 5 minutes after eating and can last hours. With Crohn's, instead of just ejecting the food, it works harder and harder to digest it, so it can be painful for as long as it takes to get through several feet of intestine. It is brutal.
With the J-Pouch, my body simply ejects the food. It takes half the time to go through my system, if not less, hits the pouch, causes an intense succession of cramping, and then ejects it, whether I am ready or not. When my pouch is flared up, it's like the food is on a waterslide.
Weeee.
Except my innards are the slide and take the brunt of the pain.

Methotrexate (the medication that makes me an easily-bruised peach) is the only treatment that settles my Crohn's. It has never put me in remission, but it does keep it sort of stable; predictable at least.
Antibiotics, however, are what keeps my J-Pouch relatively stable. Methotrexate has no major effect on the pouch, and the antibiotics have no major effect on my Crohn's. Weird, right?
Hey - whatever works.

So, when I am in a bad Pouchitis flare (yes I realize the disease name sounds fabricated... it's not. I promise you), 'good food' is any food that I can keep in my system for longer than 20 minutes. OR, if the former doesn't really seem possible, then 'good food' is anything that doesn't cause an excess amount of pain while it travels on the waterslide. Good food means anything that I can manage to eat without bawling my eyes out. Good food means anything that I can possibly get some nutrients from.

Last night I made myself some pineapple curry chicken pasta. The pineapple tasted delicious - I love pineapple. Sure the curry has milk and butter and all that goodness. Sure the pasta has gluten. But the dinner tasted damn delicious and dinners like this make me WANT to eat despite the pain and the 20 trips to the washroom between bedtime and morning. It may not stay in my system long... at all... but it gets in there. That's the point. When my pouch is flared, THIS is good food. Tasty food. Food that makes me want to eat.

When my Crohn's is flared up, 'good food' means anything I can eat that will cause the least amount of pain. This doesn't often mean food that is considered 'healthy'. Things like fast food fries are AMAZING during times like that. Why? Because they slide right through my system. They are so bad for me that my body won't even try to digest them - which can be a nice reprieve. The intestines NEED a break when they are flaring up. Usually that means fluids (like Boost and pudding and soup), but sometimes you have to indulge your taste buds while also resting your tired and utterly irate intestines.

'Good food' can mean vegetables and food that is widely considered healthy, but it can also mean whatever the hell your body can handle. It can mean whatever hurts the least but still gives you some nutrition. It means whatever your specific needs are.

Today, good food for me means Boost, pineapple curry chicken pasta, apple crisp, Gatorade, and maaaaybe some Easter chocolate.
Whatever I can eat that makes it worth the pain. :)