I am about to sit down to watch the brand new HBO documentary about the life of Kurt Cobain, “Kurt Cobain: Montage of Heck.” I have always suspected that this talented and tortured soul suffered from severe Crohn’s disease, and it turns out that it will be a large subject in this film. I will share my review of set documentary in a later post.
~The Belle
Can I really say anymore.
Dear Prednisone,
Yes, I am aware that you have saved my life on multiple occasions, including that time over well 20 years ago that I don’t doubt that your heroism brought me back from the dark brink at only 70 pounds, during a very long time battle for a diagnosis with Crohn’s disease that had already gone on for years. I am currently on more of you than I have ever been in my entire life (after spending painstaking months of getting off of your evil concoction) and I have never been so aggravated and tired of this disease more ever… thanks Obama (sorry, Mr President, you did not deserve to be brought into my own International dilemma, I know that you currently have more than your full plate on your table, bless you)… I mean thanks prednisone. After 30 years, I just want to feel better. With tears in my eyes, I wish everyone could feel the often unbearable pain Crohn’s disease can usher into your life, just for one day. After this and yet another hospital stay, this is getting more than a bit frustrating. Please pray that I can get new drug approval on Friday when I see the rheumatologist. With all of my major issues and treatment failures this is the end of the road medically for me, until a new drug or treatment is found. Hope does spring eternal, so deep inside I know there is an answer out there. For all of us. I am sure much of my melancholy comes from the fact that it is just about exactly 28 years since I finally got my diagnosis of inflammatory inflammatory bowel disease. Dum, dum, prednisone, you may be part of my life now and maybe in the future, but not eternally! (Now must keep repeating that in my mind… along with the theme from Rocky. Kids, never ever forget the theme from Rocky. Google it and thank me later.)
So take that, prednisone!
Yours (not so truly),
Belle of the Bowel “Meghan”
Bangs, not a good choice of hairstyle when you look like a cupie doll.
Time hoppin’!
Woo hoo! Happy 1st birthday to my Power Port!
I have read on many IBD support pages inquiries on port-a-caths and whether or not they should consider getting one. Let’s face it, kids, our veins are not always the best. I often find myself in an elevator, or in line at the bank and become filled with jealousy when I spot an arm and, or, hand with awesome juicy veins. Lucky! (Yeah, like that’s completely normal! LOL!) When it comes to long-term lines, I’ve pretty much had them all; PICC lines, midlines, Hickman’s and have even had short term lines, such as of the peripheral variety in my feet. I can stand being stuck for an IV about three times, but after that I completely lose it. It’s not the sticking part for me that give me a lot of pain and the heebie jeebies, it is the digging around trying to find a vein that is the real torture. Trying to explain to a nurse that I would much rather have him or her stick me again then going “gold mining” for 15 minutes can be quite the challenge. The funny thing is that many nurses first comment is that my veins, “don’t look that bad.” (As we say in the South, bless their hearts!) Six sticks later they are eating their words. My veins, like myself, are an enigma. (Just a fancy way of calling myself wacky.) lol.
The bruising of multiple failed IV attempts can make you look like you are in a tragic abusive relationship, or like Julia Roberts in that “driving nails in your arms” scene from the film Steel Magnolias. I can’t begin to tell you how many people have mentioned that scene after looking at my arms.
This is why I celebrate my port-a-cath today, and everyday. This is actually my fouth. The longest that I have had one in is seven years, and all of the others were in for years at a time, too. That’s because this Belle has mad sterile technique, yo! I have had two port infections in the 20 years that I have had port-a-caths (both, caught in the hospital, through no fault of my own), so they are definitely carry a risk, but studies have shown that the rate of infection is much lower. This is because, unlike a PICC line or a central line, when you are not using your port there is nothing hanging out of you to get infected. The port-a-cath is under the skin and you don’t even know it’s there.
My port in all of its glory! I was looking for a off the shoulder Flashdance kind of look. I had to skip that iconic scene where Jennifer Beals pulls that chain and she is doused with wateer, because I can’t get my port-a-cath wet.
My poor little port-a-cath has gotten quite the work out lately, due to the fact that I have been on TPN (all of my nutrition intravenously) for the last couple of months. As always, please consult with your doctor concerning which option is best for you.
~Meghan, Belle of the Bowel
I recently came across these and just had to share. (facebook.com/lifeaftercrohns)
Cure Crohn’s disease in 2014!
Take the IBD awareness pledge!
I hope and pray that, so far, 2014 is treating you well!
~The Belle
…happy, healthy (who are we kidding) holiday season!
As a universal truth for everyone, this belle has had quite a hectic Christmas season and have not had much time, or energy, to blog. Though, it has been in my thoughts quite frequently.
Naughty Crohnie Elf on the Shelf. (Is it just me, or is this new Elf on the Shelf tradition just a bit creepy; good and naughty?)
How is my own health… “okay,” I suppose? Man, do we serious chronic illness suffers use the word “okay” way too much. Almost as much as “I’m fine.” Maybe I should have a resolution this year to be 100% honest when asked how I feel.
Such as: “Meghan, how are you feeling?”
Instead of saying “okay” or “fine” saying: “Like a steaming pile of crap… and isn’t that ironic!”
Will this belle follow through on this resolution? Maybe somewhat, but not much. Truthful answers bring their own myriad issues, but that is an entirely different, and long, post for another time.
What I am praying for ALL of us IBDers in 2014…
Cure IBD in 2014!
Blessings to all who have stumbled upon my lonely little blog about bowels!
~The Belle of the Bowel
Wonder article on myths surrounding serious chronic illness.
Alex Davidson is a beautiful 20 year old young woman in the Johns Creek area who is braving her final days due to Crohn’s disease complications. (I wrote about her on this very blog a few weeks ago.) The t-shirts that she helped design are now available for a couple more days. The sale of the shirts will help support her and whichever cause sells the most is awarded $5000. I bought mine yesterday and can’t wait to get it! I hope you will consider it, too. It would make an awesome holiday gift. Alex is an amazing young woman! Her shirt is the super cool owl design.
Local Woman Glued to Toilet Seat
Okay, my good Southern mother (actually from Ohio) taught me when I learned to use the potty (I was one year old, prodigy all the way) that you should NEVER sit on a public toilet seat. Also, that you should NEVER touch the flusher in a public restroom. Only your foot should be allowed to come in contact with with that germ-laden beast, no matter how high that sucker is. (Due to that I was able to win the gold medal on the tumbling floor exercises in gymnastics at the 1996 Atlanta Olympic games.) To say my Mom was/is a germaphobe when it comes to her kids, might just be the understatement of the century. Ironically enough, one of the MANY “theories” out there on the causes of Inflammatory Bowel Disease is that kids can develop it from being too clean. Go figure.
Silliness aside, my heart is broken for a poor woman who got herself glued to a toilet seat with an industrial glue by a prankster at a local Atlanta Home Depot store. Okay, first I was thinking how this poor soul should have known better than sitting directly on the seat with no “protection.” Then I started thinking about myself and the (thank God) very few times I have had such urgency to have a bowel movement due to my Crohn’s disease that I had not one second to spare while out and about (and you are just praying that you are at a nice hotel’s public restroom and not the one at the back of a 30 year old Texaco gas station that you need to ask the attendant for the key with a small tire attached to it to get in.) This can also be true for women with urine urgency issues.
My prayers are with this lady and I totally agree, the first responders should have gotten her to the hospital before attempting to remove the seat, instead of using WD-40. Ouch! What a crazy world we live in.
~The Belle
Thank goodness this Crohn’s disease flare hospital stay only lasted four days. I got out the day before Thanksgiving. I am posting these pictures just to show that you can’t judge someone’s health just by the way they look. It is a serious problem that many of us have faced and I thought IBD Awareness Week would be a good time to share. (I’m showing off my new portacath in my hospital pic. It’s nice not to have to be stuck a zillion times. lol.)
Don’t judge, we are ALL fighting a battle.
~The Belle
It is just after 5:00 a.m. and I have been awake for most of the night. I do this often when I have days like yesterday. To say I’m not a morning person doesn’t even come close to expressing my abhorrence for all things a.m.; and always has. Most of that is due to the fact that my Crohn’s disease is almost always at its absolute worse in the early hours. So, days like yesterday, when I spent most of the morning on the toilet, or feeling like someone was stabbing me in the lower gut with a flaming hot medieval sword, or both at the same time. A familiar panic struck me as I basked in this oh so common never-ending nightmare… I have to go out today. First to let some dogs out for a client and then to a doctor’s appointment which could not be postponed. Thank God the pain subsided a bit and I was able to put on my big girl panties on (pun intended) and go. There have been people in my life that I wish could understand what a HUGE ordeal just getting out of the house can be when you have a serious chronic illness. Somedays are so bad that the simple act of getting out of bed, or even brushing your hair and teeth, can be the equivalent of reaching the summit of Mt. Everest for the healthy. This is one of those nights that I’m feeling better. On these precious occasions, when everyone else is sleeping I can enter my own little world. Quiet, mind awake and absurdly alone. I love it, but I don’t love a big contributing factor currently surrounding my insomnia…
This post isn’t about me, it is about Alex Davidson.
This is Alex.
This is also Alex. Twenty years old and in her final days due to Crohn’s disease complications.
Less than a week ago, I saw a story about beautiful Alex and her parents heartbreaking ordeal on a local news channel. The Davidson family has hardly left my mind or prayers since I first heard about it. I have broken into tears on more than a few occasions and I am pretty sure this has a lot to do with my more than usual sleepless nights. I can’t even imagine how Alex’s lovely parents and family are able to cope.
http://www.wsbtv.com/news/news/local/family-searches-new-home-daughter-dies/nbkSr
There is an update to this story. The Davidson’s scumbag landlord did not relent, but, praise God, the family found another home not far from this one and are moving in this weekend. Many have already paid for the first few months of rent. I ask you to also PLEASE visit the site below and make a donation to Alex and her family. I know times are tough for a lot of us, but I know even a small donation would mean the world to this family. They also ask for our prayers.
http://www.youcaring.com/medical-fundraiser/beautiful-beyond-the-pain/104060
Obviously, this story is so personal to me. (Here come the tears again.) It is literally a miracle that this I am still here. I am not the one that has suffered for over 30 years of me having very Crohn’s disease. It is my parents. There is nothing worse than to watch a child that you brought into this world suffer from an unrelenting and unspeakably painful illness. I wouldn’t wish that on my worst enemy, not even the piece of garbage landlord that threw this remarkable family on the street. As a mother and father gaze into the eyes of their newborn, all the hope in the world is in this tiny bundle. My prayers are with the Davidson’s, my parents and all of the families in the world that watch their children suffer. It is tragic and unnatural. Alex, you are my hero. Because of you, so many people now know just how serious this disease is. IBD is so much more than a “potty illness.” May God bless you here and in heaven. Keep up the fight, you are a brave warrior woman!
All my LOVE,
Meghan (a.k.a. Belle of the Bowel)
Belle of the Bowel 