Friday, April 29, 2011
Jack and Jill fell, and presumably rolled, down a hill. Note: you roll down a hill, but not up one. I remember a theatre class I was in when I was about eleven years old, and the assignment was to ‘move’ an imaginary piano. The first kid pretended to lug a massive piano across the room, and the teacher frowned: wrong. The second kid did the same as the first kid but did it slower and appeared to look more pained, but the teacher frowned: wrong. Then it was my turn, and for no good logical reason, I picked up the pretended rope, ‘pulled’, and then jumped back as if the piano was pulling me back, and the teacher smiled: bingo. Sometimes challenges are so big and unmovable that it takes more than one person to move it and move on. Not being able to move the metaphorical imaginary piano on the first go doesn’t mean that it won’t move eventually.
To the surprise, and perhaps horror, of my professors, I have decided to finish all of my classes and my work. They’ve suggested that I withdraw, take an incomplete in the class, but I smile and insist that I’m finishing my sophomore year, thank you very much. I realize that saying that I’m ‘hitting the ground running’ is only partially correct, I’ve hit the ground trying to run, but I more ended up hitting the ground rolling. I’m pretty sure it’s not because I’m trying to put out a fire, it’s more like I tripped over myself and have been rolling along ever since, watching the world spin upside down uncontrollably around me. The semester has disappeared before my eyes, I am slightly appalled to realize that the world went on without me - people ate, attended classes, laughed and slept and did other things for three weeks while I buzzed nurses and peed into a hat.
It’s no surprise that sitting in a hospital bed has given me the stamina of an insect. I’m running around campus to get to classes, finishing papers and homework, reading chapters in my textbooks, basically trying to tie up all of the loose threads. I am tired the moment I get up, but I throw myself into my day - not heroic but probably stupid - and I hit the ground rolling.
But I’ll cross the finish line - even if I roll, instead of run, over it.
Thursday, April 28, 2011
Someone I know and respect very much posted this on their blog and when I saw who published this scientific article, I had to post it here. Its a very interesting read on how the bugs/probiotics (aka microbiota) affect the brain. How does that relate to IBD? IN HUGE WAYS! the bugs in our gut influence our immune systems... and we know Crohn's Disease is an autoimmune condition in which our immune cells are attacking our OWN tissues. But these bugs do a lot of other things... and I use the word 'bugs' because theres A LOT more kinds of these bugs than just the acidophilus and Bifido bacteria/probiotics that we pick up in our yogurt and probiotic supplements... Plus, Karen-Anne and Jane Foster (the scientists and researchers of this article) were my neuroimmunology professors at McMaster University. Maybe that makes things a little bias, but I think the world of their research and of the work coming out of the Brain and Body Institute in Hamilton, ON. I strongly encourage you (if you're interested in IBD science and research) to read more of the scientific articles coming out of this institute.
Full online text at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2674977/
Effects of gut microbiota on the brain: implications for psychiatry
Karen-Anne Neufeld, BSc and Jane A. Foster, PhD
Neufeld, Foster — Department of Psychiatry and Behavioural Neurosciences, McMaster University; Foster — Brain-Body Institute, St. Joseph's Healthcare, Hamilton, Ont.
Correspondence to: Dr. J. Foster, 50 Charlton Ave. E, Tower T3308, Hamilton ON L8N 4A6; fax 905 540-6593; Email: email@example.com
Received October 25, 2008; Revised December 7, 2008; Accepted December 9, 2008.
It may be surprising to learn that the human gastrointestinal tract is home to 1014 bacterial organisms.1 In fact, there are more bacteria in the gut than there are somatic cells in the body. These resident bacteria are referred to as commensal microbiota, and their arrival during the first few postnatal days sets up a symbiotic association that is necessary and crucial to normal physiology. This lifelong association is essential to host pathogen defence and plays an important role in nutrient uptake and metabolism.2 Immunologists have been aware of this system and its importance to the development of the muscosal and systemic immune systems for a long time.3,4 What is new and noteworthy is emerging evidence that gut microbiota influence behaviour and central nervous system (CNS) function.5 This commentary provides a brief overview of research related to gut–brain communication in a context that allows neuroscientists and psychiatrists to take note and consider the role of microbiota in their research related to CNS function and behaviour.
Colonization of the gastrointestinal tract, predominantly the colon, begins at birth, continues in early development and remains throughout life. The early profile of microbiota is influenced by genetics and postnatal environmental exposure. Several bacterial phylotypes are distributed in the human gastrointestinal tract and, although each person’s microbial profile is distinct, relative abundance and distribution along the gastrointestinal tract of these bacterial phylotypes is similar among healthy individuals.6–8 Commensal flora serve several physiologic functions. Gut microbiota facilitate nutrient uptake and metabolism, providing us with otherwise inaccessible nutrients and vitamins.9–11 Colonization and the presence of microbiota is important to the development, function and maintenance of a healthy gastrointestinal tract.12–14 Interestingly, gut microbiota are also essential and necessary for the proper development of the mucosal and systemic immune systems,3,4,15 an association we believe to be central when considering the impact that microbiota may have on the development and function of the brain.
Gastrointestinal research has for many years highlighted the importance of the “gut–brain axis,” especially in relation to functional bowel disorders like irritable bowel syndrome, but much of this work has been focused on “top-down” control, or the examination of the impact that the brain can have on general gut function.16,17 New work involving intestinal microbiota, the resident bacteria present in the healthy gastrointestinal tract, is indicating that events occurring in the gut also have an impact on the development and function of the CNS. Using the top-down approach, recent work has demonstrated that early life stress in a rodent, known to lead to altered stress reactivity later in life, in parallel leads to an altered profile of gut microbiota.18 Gut microbiota are also known to influence energy balance and in turn, emerging evidence demonstrates the importance of gut microbiota to the pathophysiology of obesity.19 Energy balance and food intake are centrally mediated processes; however, the direct link between gut microbiota and central feeding circuits has not yet been made. This is an example of the less-studied “bottom-up” control, which we believe will have an important impact on both the study and treatment of diseases that have been traditionally considered to be housed solely within the CNS.
Almost 50 years ago, Gustafsson20–22 developed germ-free animals as a scientific tool.20–23 These mice have no commensal intestinal microflora and, as such, exhibit an undeveloped immune system.15,24–26 Germ-free mice have proven to be a useful tool for investigations into differences between adaptive and innate immunity. We propose that a vital pathway of communication from the gut to the brain is through the immune system and therefore suggest that experimentation in germ-free mice related to stress reactivity and related behaviours will provide answers to how intestinal microbiota influence CNS function.
A recent report found that compared with specific-pathogen-free mice, adult germ-free mice show an exaggerated stress response. Germ-free mice showed no difference in basal stress hormones but showed increased plasma corticosterone and adrenocorticotrophic hormone levels in response to restraint stress.5 An additional interesting finding in this report was that colonization of the gut microbiota and the resultant constitution of the immune system at 6 weeks of age (adolescence) led to normalization of the stress axis; however, when mice were colonized in early adulthood (8 weeks of age or later), the altered stress response was persistent throughout adulthood. Our group extended this work and examined the behavioural phenotype of the germ-free mouse in early adulthood and observed a significant basal increase in open arm exploration in germ-free mice compared with specific-pathogen-free controls on the elevated plus maze (unpublished data). Retesting of the same mice after colonization with specific-pathogen-free microbiota showed that this altered anxiety-related phenotype was persistent. Therefore in the unstressed state, germ-free mice show less anxiety-like behaviour than specific-pathogen-free mice. This observation was surprising since Sudo and colleagues5 demonstrated an exaggerated hypothalamic–pituitary–adrenal activation in response to restraint stress; however, it should be noted that the basal levels of stress hormones (corticosterone and adrenocorticotrophic hormone) in their germ-free mice were not elevated. Although preliminary in nature, these data are provocative and suggest the microbiota influence CNS development of stress reactivity and anxiety-like behaviour. Additional work using germ-free mice will provide an avenue to tease out the underlying mechanisms by which gut microbiota communicate with the CNS and influence behaviour.
Clinically, psychiatric illness does not stand alone. It is well recognized that many gastrointestinal disorders demonstrate a high comorbidity with psychiatric illness. This is particularly true for the functional bowel disorders such as irritable bowel syndrome and functional dyspepsia. Mood disorders are the most common of these psychiatric illnesses, with studies demonstrating that more than 50% of patients with irritable bowel syndrome also meet the criteria for mood disorders.27 Indeed, antidepressants are one of the most common pharmaceutical interventions for irritable bowel syndrome. Whereas most clinical and preclinical studies have focused on top-down treatment options for primarily intestinal disorders, emerging work involving germ-free mice suggests treatment options for psychiatric diseases potentially being targeted to systems outside of the CNS. New directions in preclinical work considering the importance of microbiota in combination with clinical work examining the impact of antibiotics and probiotics on CNS development and function will inform us of the importance of bottom-up control to brain function. The results of work in this emerging area may provide novel targets for intervention in psychiatric illnesses.
Competing interests: None declared.
Contributors: Both authors contributed equally to every aspect of the article and approved its publication.
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Wednesday, April 27, 2011
I’m in a funny place in my life where my future is completely open and unmapped. I’m finishing up my year long contract on May 31st and because of this there are endless opportunities that I can avail of. I’ve applied to grad schools, but am also considering working abroad for a year, maybe teaching English is another country. However, as an IBD sufferer, I can’t just pack up my life and head off into the unknown. I get Remicade treatments every 6 weeks, so I need to find a country that uses Remicade as a colitis treatment. Because this drug is so expensive, I also need to find a country that will graciously accept me into their health care system (unless Bill Gates would like to kindly donate some money to my cause… Lesley wants to travel the world with an IBD, please donate).
Due to these necessary criteria, the list of eligible countries is quickly dwindling, as are my dreams. You see, what I really want to do is take a year off and work in Australia. I don’t care if it is working in an ice cream shop on a beach, I just want to have that experience. Unfortunately if I were to make that decision, I’d have to either support my Remicade payments all by myself (as I’m hardly a millionaire, I don’t really consider that an option) or I could fly home every six weeks (see previous comment). I could have surgery to remove my colon, but that seems a drastic move for a year long vacation. Basically, I feel my hands are tied and my options limited. My dream of taking a year off and working in Australia may just not happen.
Of course, my future is not completely dim. Like I said, I have applied to grad schools, some of which are in foreign countries that WOULD treat me medically and cover my medical expenses (Halleluiah Scandinavia) . I’ve also applied to schools in Canada, so medically things would be status quo. But I can’t help wishing “what if”. What if I only needed to take some pills instead of Remicade? Wouldn’t I be able to create a stockpile and take it with me to Australia, problem solved? What if I didn’t have colitis at all? I could be carefree and not have to worry about anything except remembering to wear a lot of sunscreen. Wouldn’t that be great? What if I were a millionaire? Then I wouldn’t have to care at all. I could make my own hospital full of Remicade just for me and many other IBD sufferers that want to travel the world too, without worrying about their health.
Ah, but as that classy wizard Dumbledore said, it does not do to dwell on dreams and forget to live. So, I’m going to have to make an option that works with my life and its limitations. But, maybe someday, with a cure found, I will be able to live my dream. In the meantime Australia, I’ll be dreaming of ya.
*Writer's note: Since writing this post I have found out that I have been accepted to grad studies at Copenhagen Business School. Denmark is one of the few countries that will welcome me into their health care system. It may not be Australia, but I will accomplish one of my dreams of studying abroad again.
Sunday, April 24, 2011
Friday, April 22, 2011
I almost broke a record. Almost being the important word in that sentence.
No, it wasn’t me who won the Boston Marathon. And no, I didn’t break the record for lifting the heaviest weights or eating the most hot dogs or anything that might land my face in a book. I almost broke Stacy’s record.
Stacy, as we’ll recall, was my first roomie during my past hospital stay. She stayed in the hospital for a little over three weeks. I, on the other hand, stayed in the hospital a day short of three weeks and am finally back in my little dorm room, showered, cleaned, scrubbed of hospital scents, slightly battered and bruised, but alive and home.
My hospital stay spanned eight roommates, two rooms, a PICC line, two blood clots, three GI Attending doctors, three NG tubes and an NJ tube, two trips to endoscopy and conscious sedation, a discovery that my ribs pinch my veins thanks to ultrasounds, being assigned to every nurse twice, my iPod battery dying, six new magazines, two and a half finished essays, five new prescriptions, a friendship with the cleaning lady, and a weekday television schedule (Saved by the Bell, Good Morning America, Ellen...). I discovered that a braid keeps hair remarkably untangled after not being brushed for three weeks, but mostly that I’m more durable than I had anticipated - only majorly crying once in twenty days.
I have few expectations out of my life, besides death and taxes. I expect to be sick, I expect hospitals and poor IV access, and all of that. But let’s be clear - I don’t expect a poor quality of life, I don’t expect those trials in the healthcare system to be defeating and deflating. I expect my life to be an endless series of triumphs and challenges. I think this expectation of almost breaking hospital stay records is helpful, I don’t consider my life a tragic mess and seem to be able to slip in and out of my real life and my hospital life.
It hasn’t even been nine months since my ostomy surgery and so far I’ve had five hospitalizations and the discovery of new disease in my small bowel. But much, much, much more importantly than that, I’ve had popcorn, and run, and done yoga with my Mom, walked my dog, laughed until I cried, met amazing new people, been loved and respected by friends, interviewed for a job, gotten my driver’s license, traveled, read with small children, cooked dinners, and loved my life. Activity wise, that is record breaking for me.
I expect my life to be challenging and amazing, some pain is bound to happen, but my experiences will be real and honest and genuine. I expect to achieve all of my dreams, no matter how cheesy it sounds, I expect to contribute to the world and to be a part of the cure for IBD.
I didn’t break any records, but that’s okay. I’m showered, cleaned, scrubbed, bruised, battered, alive, and home - but optimistic and determined... and smiling.
Sunday, April 17, 2011
It’s incredible how much of a mess we make on a daily basis – at least in a hospital. I will inevitably find alcohol swabs, or those little white caps to saline flushes, hidden in my hospital bed as I move around during the day. The woman who comes in and mops everyday, we’ll call her Tony, smiles at me as she cleans up the mess the nurses (and I) have made. I have been here so long that we chat as she tidies the room, I notice her new haircut, she adds water to my flowers, and we’ve got a whole routine.
In theory, there should be a time limit to hospital stays – for our sanity, of course. My tolerance has been considerably larger than it perhaps should be; it took about two weeks to feel like I’ve officially lost sight of my ‘real world’ life. My current roomie has been in the hospital all of two days and she told the doctor this morning that she’s feeling a little blue, to which the doctor responded that a hospital will do that. I wanted to yank back the curtain and say, “Excuse me? I’ve been here for two weeks buddy. Calm down.” But of course I didn’t.
There are a few ways that I mark the passing time by – the conversations I have each day with Tony, the advertised television events that come and go, the daily change of my Johnny pants and Johnny shirt (which I wish didn’t look like prison outfits), and the twice daily change of nurses. I’ve had almost every nurse – at least twice – and we stop to have chats in the hallway as I push my IV pole (or my ‘dancing partner’ as one nurse likes to call it) on my little walks. Sometimes, if I didn’t know better, I’d swear time moves backwards.
Currently, there are a few things that amaze me – the non-stop marathon of ‘Say Yes to the Dress’, the apparent obsession with Jim Carrey themed movies, the randomness of my dreams, the totally weird feeling of conscious sedation (I swear I don’t recall doing half the things I did), and the flow of roomies to leave me. I seem to be challenging my original roomie’s record of a three week admission – if they don’t discharge me in the next couple of days, I’m escaping.
Before my latest procedure where they placed a tube down my nose into my small intestine and my two hour wait watching my heartbeat on the monitor, every nurse that came by commented on me being ‘alone.’ I was almost in tears and wanted to ask them if they thought I was unaware of my aloneness, because they sure as anything weren’t helping me feel better. The only nurse that did make me feel better made sure that no one treated me differently because I was young, she didn’t want my age to work against me. Technically, I’m an adult who can make my own decisions. But really, I’m still someone who misses her parents and gets upset and being endlessly poked and prodded.
It can feel like my life is a mess. It can feel like I don’t know where I’m headed or where I’m coming from. This is more than a bump in the road, it’s more like a Mount Everest plopped down on my path, but regardless, I am sure that I will end up on the other side – battered and bruised perhaps, but determined. Letting go of the control is the only option I really have, getting anxious in a hospital bed won’t do anyone any favors.
Saying yes to the mess in the interim means saying yes to success in the long term. Get ready life, here I come.
Friday, April 15, 2011
Here are the top ten things I can’t wait for:
1) My discharge from the hospital (two weeks is too long).
2) The ability to eat real food again.
3) The next new Grey’s Anatomy episode.
4) Classes to end (and summer to start).
5) Being home and seeing my dog.
6) Holding the newly published Gutsy Generation book in my hands.
7) Seeing my CCFC friends at the Halifax HnW.
8) Going to yoga with my Mom.
9) Going to the beach with my ostomy.
10) The CCFC announcement that a cure has been found.
Okay, so the goals range from in a few days to pretty lofty, but they are nonetheless things that I can’t wait for. I believe that everything on my list will happen, the first nine in the next few months, item #10 in my lifetime. It’s hard to wait for the things we want the most, but sooner or later they will come to be.
Contrary to what our parents told us about being patient, the CCFC is saying something different: “Can’t wait? Don’t wait!” There are a few things you can do right this moment that you don’t have to wait for! Check out the CCFC’s ‘Can’t Wait’ list at http://www.ccfc.ca/site/c.ajIRK4NLLhJ0E/b.6702195/k.E39E/Cant_Wait.htm , register (if you haven’t already done so) for the HnW at http://www.heelnwheelathon.ca/EN/index.html and enter for a chance to win a free copy of our book, ‘like’ our FB Pages ( http://www.facebook.com/thegutsygeneration & http://www.facebook.com/pages/Crohns-and-Colitis-Foundation-of-Canada/181701075182303 ), and countdown with us to our book release on World IBD Day (May 19th)!
Waiting has never been easier - we’re keeping you busy getting involved with the CCFC until all of our goals come true!
And, as promised, here is another teaser from our upcoming book: “The CCFC was a lifeline for me. It provided me with a network of other like-minded individuals who were going through the same things as I was. What’s really important when dealing with this disease is knowing that there are other people out there dealing with the same issues day in and day out and you aren’t alone.”
Hurry up and wait with us!!!
Jennie + YAC
Wednesday, April 13, 2011
Tuesday, April 12, 2011
Alas it has been too long since I last wrote about Ensure and integrating into my diet in interesting and tasty ways. This week’s recipe is Banana Tiramisu. It was a very good dessert except the fact that there was no coffee or liquor in this tiramisu. So if you are trying to be sober or if coffer or liquor does not agree with you this is the recipe to try! (Next time I am definitely going to add some!)
The only thing I found difficult was trying to integrate the banana pudding recipe with the Ensure recipe because of the different measurement amounts but it all worked out (and tasted awesome) in the end. For your reference - I couldn’t find instant banana pudding and used the stovetop kind and it worked just fine. And make sure that instead of using milk for the pudding mixture use the Ensure!
I made this recipe with my mom on Earth Day (so you can do the math – it has taken me a while to type this one out) and it does take 2 people to make this (but you could do it with one as well). So we’re sitting around the kitchen table, playing our board game using only candle light and crank flash lights – we are also eating the banana tiramisu what could be more perfect? I will warn you my sister did make a comment about the tiramisu being too banana powerful – but if you like banana it’s perfect! I would even suggest putting even more banana slices and using vanilla pudding – yummy!
Makes: 8 servings
1 3-1/2-ounce package instant banana pudding
1 8-ounce bottle Ensure® Homemade Vanilla Shake*, chilled
1/2 cup cold skim milk
8 ounces fat-free cream cheese, softened
1/2 cup fat-free sour cream
1 cup fat-free whipped topping
1/4 cup fresh orange juice
1/4 cup water
16 ladyfingers (3-1/4 ounces)
1/4 ounce dark chocolate shavings
2 whole medium bananas, peeled and cut into thin slices
(Reserve several slices of banana for a garnish.)
White and dark chocolate curls (optional)
Fresh mint (optional)
1. Pour dry pudding mix into a bowl. Add the Ensure Shake and milk. Whisk by hand for 2 minutes or until mixture is thick and smooth. Set aside.
2. In a medium mixing bowl, beat the cream cheese with an electric mixer for 1 to 2 minutes or until light and fluffy. Add sour cream and beat for 30 seconds. Reduce speed to low, pour in the pudding mixture, and mix until smooth. Fold in whipped topping and banana slices.
3. Combine the orange juice and water in a small, shallow bowl. Dip each ladyfinger in the juice mixture and arrange 8 ladyfingers in the bottom of an 8 x 8-inch baking pan. Spread with half of the banana cream (about 2 cups). Repeat with remaining ladyfingers, juice, and banana cream. (This dessert also can be assembled in individual stemmed glasses.)
4. Sprinkle with the chocolate shavings, cover, and chill for 4 to 24 hours.
5. To serve, cut into 8 portions. Arrange slices of banana on each serving and garnish with optional chocolate curls and/or mint. Store covered in the refrigerator.
Monday, April 11, 2011
I am going to Greece in 17 days. I began the countdown at 84 days, so I’m not going to say the old clichéd “but who’s counting” phrase. I am counting, and have been for quite some time. Needless to say, I have been extremely anxious and excited for this trip. Except lately something has been occurring that has lessened my excitement. This month I started to notice a lot of bloating, then some discomfort, and finally, on Saturday I noticed blood in my stool. Ladies and gentlemen, I am in flare-up territory. I can almost hear the collective sigh of colitis sufferers reading this. No one wants to be having a flare during a trip. Especially not a trip you have been planning for months, a trip that involves a lot of flights and ferry rides and fabulous Greek food. Trust me, this is the one trip that I do not want to be running to the washroom every 10 minutes.
It’s not that my friends would not be understanding. My travel partners are two of the most fabulous woman on the entire planet. They would probably dig a toilet for me in the middle of Athens if needed (they would also most likely take a picture, but hey, what are friends for). It’s not that I have never travelled with a flare before, because I have, and often. I even have my ten rules of travelling with an IBD (which will be published in our must have book coming out on World IBD day... MARKETING ALERT!!!). It’s just that for once in my life I want to have a carefree experience of going on vacation without worrying about my health, or be on the constant look out for washrooms. I want to be able to have a couple of drinks (something that I rarely do so as not to upset my colitis). I want to be able to eat anything that tickles my fancy, without calculating my grace period of time before I need a washroom. I want to go on full day excursions without the stress of “what if”. I want to be relaxed, carefree, and zen.
So, in order to ensure that I can have my dream vacation, I am making a deal with my colon. I am going to treat my body like a temple for the next 17 days. I will take my daily probiotic supplement 3 times a day, just as the bottle says. I will not eat any grease, or fatty foods. I will try my darndest to not eat too much refined sugar. I will use my enemas nightly, no matter how tired I am, or how uncomfortable I find them. I promise to do right by my colon for the next 17 days, in hopes that it will give me my dream vacation. Because really colon, I deserve this one.
Wish me luck,
Saturday, April 9, 2011
Friday, April 8, 2011
Cross your fingers, cross your toes. Any superstitious habit, pull it out now. What’s the big deal?
My IV access. It, in a word, sucks. Not an unusual problem for chronically ill patients, but a serious problem nonetheless. It’s easy to figure out how useless my veins are, the IV team runs around to poke me for blood and placing IVs which blow every day more or less.
It’s kind of a joke, but it’s also kind of a desperate make-a-wish plea - give me a port, a PICC, give me access. I try to make conversation with anyone pricking me with a needle because a) they might do it a little nicer and b) it makes it less awkward. I mentioned to the IV nurse about my quest for access and he decided to write in my chart that I needed something more than IVs. He said there was one last spot, but after that he was done. And he wasn’t kidding. The IV has officially refused to come and poke me - officially. Can I just say how weird that is?? I’ve never heard of being refused by a medical service, but it is nonetheless my reality.
So here’s the scenario: I’m up the river without a paddle or a boat. I’m sick and need IV meds, and can’t get them since I have no access. My night nurse, we’ll call her Liza, is arguably the most optimistic hilarious nurse I’ve ever met, and she decided that she would try for an IV - once. Liza warmed me up with heat packs and went off to share our new mantra with the nursing staff - “Pray for 14A.”
Not only was I the girl who could place an NG tube, I was the stubborn 14A bed who couldn’t keep an IV. The entire nursing staff prayed, and three tries later, nothing. But a PICC was on the horizon for the next day. First several PICC attempts failed. They shipped me down to Interventional Radiology where they finally got a line in me - and it’s purple, which is my favorite color, bonus.
I’m not going to pretend like IVs don’t hurt, or that placing a PICC is a fun exercise in radiology, but when you need it, you need it. It’s not like I didn’t go in the bathroom to cry when they said they found Crohn’s in my small bowel - almost eight months post-ostomy and I’ve been admitted five times, and let me tell you it’s not for the food.
Being sick is a full time job. We have to cope with the physical ailments, the treatment, the day to day stuff, the doctors, and regular stressors. It’s not like we chose it or in any way signed up for it, but it is the reality that we have to face each morning.
One of the technologists in the radiology department was asking about my major and so I was talking about my career goal and working with chronically ill kids. The tech came back with an interesting observation - he said that you can always tell the chronic illness kids because when they’re wheeled in, they scan the perimeter for what is going to hurt them, be it a needle or whatnot.
And it’s true. We want to be leveled with, told how much it’s going to hurt, because saying it won’t and then having it hurt does nothing to make the situation easier. But it’s awful, living in fear of the pain and the suffering.
The reality is unfair, and I’ve said that a thousand and one million gazillion times. It doesn’t matter how much nurses chant your ‘pray for 14A’ wish, it doesn’t mean that some divine intervention will give you blood return. But what does matter is in our control - coping and dealing and asking questions and pursuing our best health and life. Laughing, crying, hugging, no one needs a prescription for that.
After a rather nasty tasting Barium swallow, the doctors want to see my stoma (the intestinal part of the ostomy). I pulled off my bag, only for my little stoma to profusely spit Barium all over me. After the doctors left, I buzzed the nurse and was unable to move, literally coated in Barium. I was barely rationing my limited underwear supply, but I mentioned to the nurse about throwing out accident panties, who wants to use those again? The Barium was all over and all the nurse and I could do was laugh as we discussed when to throw out underwear, like deep belly laughs - I even had the Barium on the bottom of my feet, now that takes skill.
It was gross for sure. But it was funny. I apparently need all the help I can get when it comes to accidents, but don’t we all?
Once upon a time I thought that I could wish away my Crohn’s as simple as a birthday wish over chocolate cake and pink candles, but it’s not that simple - clearly. But even though I can’t wish it away, doesn’t mean I can’t laugh or think it’s amusing. Praying for an IV won’t necessarily work - but hard work will eventually triumph in the fight for the cure, and when that day comes, we can say that we helped, and that, that is worth everything.