Appetites, Scares, and Good Times

With UC, food feels like your worst enemy (next to the disease, of course). I am delighted to find that post-surgery I have a fantastic appetite that has nothing whatsoever to do with Prednisone! I’ve been enjoying food more than I have in almost four years. I do stay clear of carbonated stuff (pop, beer) and since I didn’t drink that much anyway, it’s not much of a sacrifice. Besides, I’m not interested in giving my little friend an excuse to make noise or my bag to blow up like a balloon. No nuts, no mushrooms (yuck), no seeds. The only “issue” I’ve had, and forgive the graphic nature of the statements to follow, REALLY thick stool. The smell is tolerable (thanks to the mouthwash) and the baby oil keeps stool away from the top of the bag. Otherwise, it is a nuisance to get it out of the bag when I empty! Not to mention cleaning out the top…mess. To the max. So, once more, I have consulted fellow ileostomates and discovered the key to this solution: JUICE! I drink apple and orange mostly, but cranberry and grape are the beverages you require to achieve full looseness of the stool. It cleans you out well too! I usually drink one half glass of juice with almost every meal, in addition to water. I skip the riual at dinner; I don’t want to overdo it. 

I do have a humorous story about drinks though. I was experimenting wih Strawberry Gatorade one day, and without a thought, drank an entire 24oz. bottle of the stuff. About two hours later, when the time came to empty my ostomy bag, I nearly had a heart attack to see red liquid in the toilet.  I literally started hyperventilating and thinking about all the times I’d seen blood staring back at me during a flare. I quickly cleaned myself up and left, distraught. I thought over and over, what did I do??? What did I eat???? My dad saw me out of sorts; after explaining what happened, he gazed at me thoughtfully, chuckled, and said, “You drank all that RED Gatorade, goofy. Cool it.” I froze, and My pale cheeks flushed about as red as the drink itself. Duh, Steph…Sheepish, you bet I was!

I noticed my moods are strange. I feel like my hormones are wayyyyy off. My cycle has stopped since August. They said that would happen. I was informed that I may not have a regular period for several months. Now on one hand, as a female, that’s spectacular! On the other hand, I feel odd not having it every month. My moods catapult out of control (again, nothing to do with steroids). I get bothered easily. One minute, I’m excited and the next minute, I’m crying. Okay, okay, so I will admit to being an emotional young woman pre-surgery, but this is silly. I am dealing with it as best I know how. You know, the “one day at a time” mantra.

I had the privilege to watch my youngest sister join The Laughing Aardvarks, the high school improv troupe, perform last weekend. She and the whole group did a marvelous job and they were certainly fun to watch! I myself was in the same group when I was in high school and it happened to be how my boyfriend and I first met. I had the opporunity to see many of my old friends. The best part was, nobody even saw my bag! No one knew! It was like I had this awesome little secret! 

Today, my mom and I ventured North of Chicago to attend the first training session for the CCFA Team Challenge Team Illinois! They’re training for a half marathon in January in Miami, FL and originally planned on joined them myself.  Due to the timing of my surgeries and the recovery needed in between, I could not commit to participating. However, the Endurance Manager invited me to act as an Honored Teammate to motivate and encourage the team as they trained and raised money to battle Crohn’s and Colitis. Myself and an 8 year old boy named Kyle with colitis are the Honored Teammates for Team Illinois. I have spoken with Kyle’s mother, a sweet and strong woman who obviously adores her son and does everything in her power to maintain a positive attitude for herself and her family in spite of Kyle’s affliction. I sincerely hope I’ll get to meet the springy, bright young man I hear so much about soon enough. Speaking of which, his birthday is Monday (along with my sister Alex’s) so HAPPY BIRTHDAY, ALEXANDRA AND KYLE!  

This morning, I met some members of the team and their coach. I got to talk to everyone about the cause and tell them a little about myself. My mom and I joined the executive director out “on the trail” and acted as the team’s water stop. I basically ran around with pom-poms screaming, “Go Team Illinois!” while Mom and Marianne provided cool cups of refreshing, tasty water as the runners passed (which I’m sure sleepy residents appreciated early on a Saurday morning). The walkers go 3 miles and the runners go 6 all around the neighborhood. It’s only week 1 and everyone did such a great job! It was fantastic to listen to some of their own stories; their pain, their struggle, and their triumph. We had such a fun time meeting the team and next week is Family Weekend so I’m trying to work out a way for everyone to go!

If you interested in joining or donating to Team Illinois, it’s never too late! Check out http://www.ccteamchallenge.org/Teams/Illinois_Carol_Fisher_Chapter.htm

Take care all!

“Ostomy Educational Theatre” and Ileostomy Life As I Know It

I recently ordered a sample kit from Hollister (the ostomy supplier) of some items I’d been looking to try. The sweetest thing about suppliers is they’ll send you free stuff because they’re positively itching for you to test their products. Everyone knows the best price is free so how can you say no?

In any case, my kit included the following:

Adapt Paste/Care Tips, Adapt Barrier Rings(3)/Care Tips, Ostomy Education Booklet (Ileostomies) and DVD, Lock N Roll Two Piece Pouches (3), Black travel Bag, Scissors, Mirror, Packets of Adapt Lubricating Deodorant(6)

Not bad for Free, eh?

For those of you who are not familiar with the ostomy lingo and process, allow me to explain. An ostomy bag can come in one piece systems or two piece systems. You can use either depending on your preference. The difference between the two is that on the one piece the bag is atached to the flange, which is the sticky part you secure to your abdomen around the stoma. You usually have to measure around the stoma and cut the flange to fit. Then you remove the paper backing and just press it on like you would a bumper sticker to the back of a car. It’s nice because the one piece hides under clothes better. I personally prefer the two piece for several reasons.

The two piece system is pretty self-explanatory: it’s the same deal only the flange and the bag are separated. You snap them together like tupperware and you can remove the bag anytime you want. Whether you want to “burp” your bag and get rid of gas or clean the area around your stoma, it’s very handy having the two piece. Plus it makes removal and changing much easier. With a one piece you really have to work around the bag. Two piece you can pop off the bag and simply work with the flange. Good stuff honestly. The only downside is that it can be tougher to conceal under clothes, but if you’re a fashionista with creative ideas, you can work it out. High waist leggings and a-line tops are my new best friends!

I also forgot to mention the other accoutrements that go along with the bag. For instance, paste is a thick beige glue that smells a lot like vanilla extract and Elmer’s which you put around the stoma before securing the flange to prevent leaks and to help keep the bag on your belly. I discovered that I am allergic to this paste so now I use barrier rings. Barrier rings are sticky little doughnuts you stretch out to fit around the stoma that serve the same purpose.  So far, me likie. No more red rash! Thanks Adapt Barrier Rings! (I should do a commercial…)

As for Lubricating Deodorant, I haven’t found this very helpful at all. See, I have a bit of a problem. Embarassing as it is, it is incredibly common among ostomy folks, so I fear not sharing my woes. My stool is thick (as it should be! This=Good) however, the scent is mercilessly foul. Ask me how foul. “How foul is it?” It is so awful, my friends, I kid you not, I GAG when I smell it. (That=Bad) So lubricating deodorant is supposed tonot only get rid of the smell but prevent the stool from…what is the term that’s used….oh yes, from pancaking in the bag so you can’t get it out. It is a double header! No fun! I was using M9 another deodorizing solution religiously, but it too has failed to quell the mighty storm of smell. My solutions instead have come from different sources and both have been effective: baby oil and alcohol-free mouthwash. Do it and trust me…it will astound you! I pour baby oil into bag every time I change it and no more pancaking poo. I put some mouthwash in my bag every time I empty and poof! The stench has vanished! Ta da! I swear, I’m a walking advertisement today! Those are really my only complaints about the ileostomy; otherwise I hardly notice it’s there.

As for that DVD, which carries the title “Ostomy Educational Theatre”, I have yet to watch it, but by the looks for things, it may be filmed in the style of those crappy health videos we were forced to watch in 8th grade. I can’t wait! Maybe I’ll whip up a chocolate milkshake (oh yes, I’m doing shakes now; I haven’t been gaining much weight and I look like a darn twig, so I’m working on getting some back) and settle down for an evening of OSTOMY EDUCATIONAL THEATRE!!!!!