Ileostomy 5 1/2months Update

I realized today that I’ve had my ileostomy for a little over 5 months. It feels like so long ago that I had my surgery. Ages. Years. Eons. Centuries. I can’t even think about surgery without getting a ferocious gurgle in the pit of my stomach. The thought of the experience is nauseating. I honestly cannot even watch anything involving hospitals on television anymore. I start to get unreasonably nervous.
That’s merely my psyche at work.

The ileostomy itself is all right. I’m changing my bag about every four days. I have the process down to an exact science now. It’ll all a matter of being prepared and efficient. I have the gear ready to go. Plastic bag by my side. My special wash cloths tucked in my belt and by the sink. I do it in the morning when my ileostomy is least active. Ten-Fifteen minutes. I do my thing and voila! Clean, packed, and ready to roll!
I empty my bag on average about 6-8 times a day, depending on what I eat. I notice the bag filling about 45 minutes after I eat, unless it’s one of the four Ps (peanut butter, pasta, potatoes, pretzels) than it takes a little longer before I see any output, which is fine by me. The sad part is, my diet has been limited lately. I notice that both meat and chocolate are culprits of liquidy output and the tragedy is, it’s really painful for the few hours while it evacuates. So I’ve cut it out of my diet all together. I’m eating more eggs and peanut butter now to replace the protein. In addition, I’ve started drinking Ensure again, which is bringing back fond memories (insert sarcasm here) but I need to get protein somehow. I don’t eat any fruit or vegetables for fear of blockage and without insurance, I have no one who could help me in such a case. I drink lots of orange juice and V8 fusion fruit/veggie juice to replace lost nutrients there, so that’s a tremendous help 🙂 I’m eating a good deal of pasta and carbohydrates…which again reminds me of unhappier times, sans the excruciating pain and mind-numbing cramps. I really shouldn’t complain. Forgive me.

In the meantime, I’m working two jobs with relative ease and sleeping a lot better at night! A good friend of mine recently tuned me in to a trick to sleeping on your side/back without fear of “bag burst”. It’s nothing more or less than tucking the bag into your pajama pants and stretching the pants over your waist (Steve Urkel style). I’m not very fashionable whilst I slumber anyway, so it was a small sacrifice to make on my part…ha ha ha. Ever since then, I’ve been sleeping much more soundly on my back and right side and I still wake up to empty as needed. I also recognized the importance of eating dinner early so as to avoid much output during the night (common sense tricks, yes?)

I’m also happy to say that my sex life has vastly improved since I got my heart tie! It’s a worthy investment to be sure! I feel beautiful and confident again! Listen to me, I sound like one of those chicks in the wieght loss commercial! “I lost 70 pounds and now my husband can’t keep his hands off me!”  Yikes! In all honesty, everything is great again. Sean has been, as always, kind and encouraging. Our physical relationship is quite the opposite of what it was (or wasn’t) 5 1/2 months ago. We’re exceptionally happy since the heart tie came onto the scene.

  I realize that I’ve been undoubtedly poor with my updates of late and for this I apologize. My frustrations with my ileostomy are only diminished by my triumphs with it. Every day is different. Most days I am on top of the world and nothing can stop me. Every so often, I’ll fall into a mini-lapse of misery, cry it out, and be fine again. I can’t quite comprehend it myself. I’m convinced now it’s a psychological quirk of mine. My little inadequacies and insecurities make an unwelcome visit for a night of binge drinking in my head and raise hell until the reasonable side of my brain busts in and breaks up the party.  I deal with it as it comes. I notice it’s worse just before my menstrual cycle starts…coincidence? I think not. 

I’m really proud of my friend Kyel, who recently had his take down surgery (on Friday the 13th no less! Brave man!) and he’s been through a long and difficult road, like so many of us, and is finally on his way to a better and happier lifestyle. it will take time, to be certain, but he is a strongwilled and humorous young man who I know is up for the final step of this task…recovery. Yeah, Kyel! He’s a champ!

I don’t know if I mentioned this (most likely the negative) but my travels to Florida with the ileostomy went without incident! No problems whatsoever! I danced and walked and walked some more and sat in the sunshine and even changed my bag without having any slip-ups! Not even with security! Although my shoes did launch all kinds of investigations with rubber gloves and x-ray machines (with the shoes…not me) that temporarily held me up on the way to Miami. I haven’t the faintest idea why…Team Illinois did an outstanding job. Everyone made the 13.1 miles in under 4 hours, one of the team members did it with a bad knee and another with a head cold! I couldn’t believe their enthusiasm and dedication! I remember watching them all for the first time at practice, going a mile or two and to see how far they’ve come…an inspirational and commendable accomplishment! At the end, everyone was sad to say goodbye. We’d really become a family. I strongly encourage everyone to give Team Challenge for Crohn’s and Colitis a try. It’ll change your life and yes, even “cliche” may say that sounds “cliche”, yet I believe it with every fiber of my being!

Follow the link for pictures of the Team Illinois and their journey to Miami for the Half-Marathon! Team Illinois Album

I put in an application to be a counselor at Camp Oasis for kids with IBD in the summer. One week of fun in the sun! I’m pumped and keeping my fingers crossed that I get accepted! I’d love to do more work with kids who have IBD! If you’re interested in being a volunteer or if you know someone who’d like to be a camper, check out Camp Oasis Website  I also started my own team for the Take Steps Crohn’s and Colitis Walk. For more information, go to Take Steps for Crohn’s and Colitis It’s participating and being involved in these events that makes all of it worthwhile! We’ve got to keep fighting the good fight together!

That’s all for now! I wish everyone the best of health! Take care!

Stephanie

Traveling with an Ileostomy

I have the privilege and good fortune to be traveling to Miami, Florida this Friday for the Team Challenge Crohn’s and Colitis Half-Marathon. As an honored teammate for Team Illinois, I am acting as a volunteer and cheerleader for the wonderful people who have dedicated the last 16 weeks to training and reaching their goals in the struggle to put an end to Crohn’s and Colitis. Wow, that’s a mouthful. That said, I’m sure folks are curious about how I am planning to travel with my ileostomy.
Two weeks ago, I contacted my ostomy nurse requesting a note with a letterhead from the hospital stating that I carry necessary medical equipment with me at all times, just in case I got stopped on the way through security. I am packing extra supplies, because you never know when you might need it. Plus, I don’t really know many place that carry ostomy supplies. I am also taking an extra precaution and bringing my ostomy supplies with my in my carry-on bag. They could lose my luggage for all I know and I would screwed big time! As for the flight, I just gotta make sure I empty my bag before the flight, stay hydrated (water and juice mostly) since the air is drier in planes, and if I need to empty during the flight, do it after they serve drinks. Ha ha ha.
I feel exceptionally prepared for this. I’m not as nervous as I was last week. I’m more excited about the trip now than anything! Wish me luck! This promises to be a thrilling weekend! Good luck to all Marathon participants (especially my friends on Team Illinois)!

I got my heart tie…I’ll have to save that for my next post…

Best of health to everyone!