Month: November 2014

Items to Add to Your Wish List for the Holidays

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How the hell is it Thanksgiving week already?  The doors to the Christmas season will soon be thrown wide open, though they’ve been cracked since Halloween, the candy and costumes on clearance the last week of October, while Christmas trees and garland fight for space on the shelves.  I’m getting off track here, I suppose. Remember the joy of making out a Christmas list when you were a child?  How fun it was to think about what gifts you wanted, the anticipation of what would be under the tree?  I’m the first one to admit that that is completely NOT what the season is about, but the reason I’m mentioning it is that, as someone with IBD or a related condition, there are some really useful items you can put on your list this season just in case friends, family or good old Saint Nick happen to ask.  Many have been extremely helpful to me, particularly during the course of a flare.  A few items to think about this season: Vitamix – to call this …

Surviving a Hospitalization

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It goes without saying that at some point, if you have IBD or a related autoimmune disease, you will likely be hospitalized; some more than others.   This is why I always travel to the ER with my at-the-ready overnight bag, because you never really know when an admission will be needed.  Everyone’s “necessities” may be different, but below is a list of what I usually keep in my bag: Basic toiletries Toilet paper & Cottonelle wipes (the hospital grade TP is murder on my poor bum) Earplugs (helpful for blocking out noisy IV pumps and possible snoring roommates) Sleeping mask to block out light from the corridors Cell phone charger Reading material Loose, comfortable clothing with open necklines to allow for access to my port (tanks with built in shelf bras, yoga pants, etc.) Socks and a robe Heating pad (they hardly ever have them in the hospital anymore, and I’m spoiled by my awesome infrared model, so “Sparky” comes with me) If you are in the hospital often enough (hopefully not), you may also want to invest in …

When Work Isn’t Working

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This post is a very personal one for me, and one that took me a bit of time to write, as it is still something I struggle with almost daily and is a subject very close to my heart.  It’s such a rare thing to get paid to do something that you truly enjoy, and though my path to get there wasn’t a direct one, I felt lucky to have found it, and am grateful to this day for all the people to whom it has introduced me and the places it has brought me in life, both literally and figuratively. The role of work is one that many with IBD have a love/hate relationship with.  Work helps give us a sense of purpose, allows us to meet people and socialize outside our normal circles day to day, and offers a welcome distraction to the daily rigors of symptoms.  Many will struggle at times with being able to work, depending on the symptom severity, the type of work that you do, and how understanding your employer is …

Bowel Obstructions and NG tubes

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Bowel obstructions are something that many with IBD have to deal with, whether it be on an occasional basis or something more frequent if issues other than food consumption are at play.  For potential obstructions, there are a few signs to look out for: severe abdominal pain (not sure if everyone’s is the same, but the only way to describe mine is that it starts out like someone is kicking me in the stomach and usually culminates with me feeling like I’m being ripped in half at the midsection; this usually is paired with some Linda Blair-like head spinning once I’m at the point of going to the ER until the happy juice is administered), nausea, vomiting and a lack of bowel function (for full obstructions, you will be unable to defecate or pass gas, though you may be able to have some very liquid stool with a partial obstruction).  What I will detail below is simply my own personal plan of attack when the initial signs of an obstruction hit; I want to be …

Dealing with Unsolicited Advice

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First, let’s just get this out of the way now. At some point along your journey, you will likely be confronted by some ignorant douchebag that is convinced that he or she can cure your IBD with a particular protein shake, a vitamin supplement, or by eliminating some major food group from your diet.  How you choose to respond is entirely up to you; while I can’t condone violence as the answer, I would be lying if I said that it wasn’t my instinctual response 99.9% of the time.  Instead, I typically take a more passive-aggressive approach, which both allows me to feel as though I’ve given a verbal sucker punch to the face while the recipient is made aware that I find his or her unsolicited bullshit rather offensive, which in my mind lowers the odds that they will make this vile mistake again. Recently, my husband and I were lounging by our community pool one afternoon, a day or two after I had been discharged from the hospital for a bowel obstruction. One …

Holiday Eating

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Whether we accept it or not, the holidays are fast approaching, and with them come the temptations of foods we don’t normally eat.  I’m not talking about the extra servings of desserts that add that comfy padding to our hips, or the dozens of “coffee” drinks that appear this time of year that contain more shit than they do actual coffee.  No, I’m talking about the appearance of things that you know you really can’t have, at least not without a trip to the ER. The infamous coconut macaroon incident of Christmas Eve 2011.  I remember it well, and it has kept me on a fairly straight path ever since, mostly because, as many of you know, the pain of an obstruction is something that I can only compare to that scene from The Princess Bride when Wesley is stretched out on that death machine after being captured by Prince Humperdinck’s men.  (Not that I’ve seen the movie a lot or anything…)  Remember that scene when Humperdinck runs in and cranks the machine up to ten and …

Dietician Advice

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Recently, after a couple of hospital stays due to my electrolytes being really screwed up from absorption issues, I took up my GI doc on his offer of a referral to a dietician for a consult. In retrospect, I probably should have gone a lot sooner given that I’ve had Crohn’s for 13 years now, but hey, what can I say?  Guess I had my head up my ass. I’ve always been a pretty healthy eater (everything in moderation kind of thing) as far as eating my fruits and veggies and such, though I will admit that ice cream was my vice and has been for years. I figured that another set of eyes couldn’t hurt to see if there was anything I could be doing differently in my day to day routine. I had sent the dietician a three day log of my eating prior to the visit at her request, so she would have time to analyze it, and was happy to hear that for the most part, my diet was great and …

A Laugh for Today

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So I know I need a laugh today, as yesterday I had an awful day, spending a large part of it at the radiology clinic downtown chugging gag-inducing amounts of barium down and then spending the next three and a half hours having pictures taken every 20 minutes so they can try and pinpoint where the narrowing in my small intestine is, as I’m considering the possibility of a surgical option to correct this.  Seriously, how in the hell is it possible that medical advances have come far enough along that we can use the heart of a baboon in a human’s body, yet no one has come up with a way to make that god awful chalky barium nightmare taste any better???  Anyway, thank god that is over, and in the spirit of having a better day today, I thought I’d share an experience I had with my ostomy right after I was cleared to eat what I wanted from my surgeon after the colectomy in 2006.  Those of you whom have suffered for …

Helpful Phone App for Medical Records

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Keeping track of your medical history can be quite a task, not to mention making sure that all of your physicians are kept in the loop. Thank god for the My Medical app (available via multiple platforms), which is only about five dollars to download, and may well be the best money you will ever spend.  This handy tool allows you to store medical information for multiple people, each with their own individual profile.  It will prompt you to enter everything from basic general information and emergency contacts to current and past medications, tests, procedures, surgeries, allergies, diagnoses, immunizations, hospitalizations, complete physician information, family history, health insurance….the list goes on and on.  You can add notes for certain hospital stays (mine typically reflect which medication combinations tended to clear my obstructions most quickly) AND, best of all, you can wirelessly print the entire document or email it at the touch of a button.  Being that we are rather frequent flyers at the local ER, I have three copies printed up at all times (one in …