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Follow me on Twitter and Instagram to see what I’m doing in Washington D.C. for Crohn’s & Colitis! I’m getting my Mr. Smith on and standing up for Inflammatory Bowel Disease patients on The Hill with the Digestive Disease National Coalition March 2nd-March 3rd.
Okay that’s probably the cheesiest title I’ve given a post in a long time, but I am gosh darn so excited and honored to be apart of this years Take Steps For Crohn’s & Colitis Los Angeles as Team Captain of Team Crazy Creole Mommy & as Take Step’s Adult Honored Hero for Los Angeles!!! I know right?! Whaaat?! It’s the coolest thing to have the blog recognized by The Crohn’s & Colitis Foundation as a resource for other patients with Inflammatory Bowel Disease.
So now I need it’s time to put my fundraising cap on and raise as much money as possible for those all over. Particularly younger patients who wish to attend Camp Hope and local support groups through The Crohn’s & Colitis Foundation. With 1 in every 200 people having a form of IBD, it’s time to make it a household name. And while we would all love to find a cure for Inflammatory Bowel Disease and the diseases it triggers, we have to care for the patients & survivors in the meantime. There are patients dying slowly from Crohn’s or Ulcerative Colitis. There are patients with JPouches and Ostomies that don’t have access to education, medical help or supplies that they need for their new way of life. It’s time we start giving these patients a better quality of life until there is a cure!
Please support Me & Team Crazy Creole Mommy. Walk with us! And if you can’t walk, please donate!
Some of you may know about Hippo’s love of national news stations & it’s journalists. I was the exact same way when I was growing up. In fact, I am still quite in love with Peter Jennings! Of course I’ve also grown to love Chris Cuomo, Don Lemon, Arthel Neville, Brian Williams, Chris Matthews, Robin Roberts, Diane Sawyer, Bill Weir, Rachel Maddow…okay you get the point…I love national news. I’ve past this love down to Jax. I think it’s because before preschool he was home with me everyday and for the most part I kept CNN, MSNBC or BBC on while he did his lessons or I was sick in bed with a flare up. If I was sick in bed with a flare up, quite often he was in laying in bed or on the couch with me if I didn’t have a nanny that day. So between Yo Gabba Gabba & Curious George, I’d catch a little bit of the Situation Room or Hardball, or something like that.
Anyway, Jax grew fond of some of these Journalists. But it was CNN & ABC News that stuck out the most to him. Not sure why, but those are his favorites. Yes, my four year old loves watching CNN’s The Situation Room w/ Wolf Blitzer & ABC’s Nightly News w/ Diane Sawyer! He’s such a huge fan Of CNN (what he calls Sienna News), that when he found out one of my mom’s clients moved over to CNN from Fox, he told all of his friends at school. He was so excited at the thought that she would possibly see Wolf Blitzer one day at work! My son LOVES Wolf Blitzer! I have figured out, for the most part, why my four year old loves Wolf Blitzer so much.
The man’s name is Wolf…Blitzer! It’s one of the reasons we all LOVE Wolf Blitzer.
Jax is convinced that Wolf Blitzer is Santa’s brother.
His name is Wolf Blitzer!
He has seen President Obama on The Situation Room. I explained The President has a room in The White House, actually called, The Situation Room. Score Preschooler cool points for CNN!
Wolf Blitzer did a segment on President Bush’s paintings of his dogs, which Jax absolutely loves. Yes, this liberal democrat (or demoCRAB as Jax says) has a bipartisan son who LOVES President Bush. Ironically he’s even taken up calling VP Biden, “Vice” just like President Bush called VP Cheney…weird! AND he said even though he’s a “democrab” and likes some “democrab pwesidents” , he wanted to know if it was okay to vote for a “repopelicun” for “pwesident” too. I told him, that he should vote for the person he thought would help EVERYONE in the country. And that your political party & religion cannot make you a good or bad person, only you can do that. To which he answered good, because he liked some “repopelicun pwesidents” too and he may vote “repopelicun” when he grows up………. moving on…………..
Wolf Blitzer is named, Wolf Blitzer!
Okay, so basically my son is a huge Wolf Blitzer fan. When he is home he watches The Situation Room while coloring or playing with his action figures. He asks questions and engages me during the hour long program (of course I mute or change channels when anything disturbing or too grown up is on.). So, in Jax’s mind, Wolf Blitzer is news. He knows it all and he shares it with the world.
A couple of days ago, Hippo asked me where did all of the Presidents live now (that they’re out of The White House). I told him where Former Presidents Carter, Bush, Clinton and Bush all reside now. But then it got weird. The following is based on a Hippo’s True Story.
Hippo: But what about Abraham Lincoln?
Mommy: Well, Abraham Lincoln is dead, honey.
*silence* a look of shock and confusion crosses Hippo’s face. And in an over exaggerated interpretation of how an adult reacts to something shocking he replies:
Hippo: WHAT?! WHEN?!
Mommy: Oh honey, President Lincoln died over 100 years ago.
Hippo: ONE HUNDRED YEARS AGO?! ARE YOU KIDDING ME?!!
He starts pacing with his hand plastered to his forehead, trying to process this breaking news. He starts mumbling “but” & “I don’t beweave dis!” and other phrases he is quite sure adults used when they are in complete shock! Then he turns on his heel to face his mommy again and says in a voice that is laced with bitterness, hurt and betrayal.
Hippo: Wolf Blitzer, never told me THAT!
Then he storms out leaving mommy confused as to what just happened. Before she could let out the laugh that had been building in her throat, Hippo returns.
Hippo: Did he tell da Pwesident?!
Mommy: The President knows.
Hippo: Well, Thank you God for dat!
And that ladies & gentlemen is the day that Lincoln died! R.I.P. President Lincoln. We love you!
I’m actually not really sure how to start this post. It’s such a sensitive subject for most IBD patients. The subject of colorectal surgery. And although I was diagnosed with Ulcerative Colitis 6 years ago, I have only become really familiar with all the terms and procedures two years ago, and not really understanding the effects of it until about 9 months ago once the initial shock and dust settled. You’re probably wondering why would an IBD patient not really understand or know all her options. Well, because if your situation was like mine, then you were told that SOME patients have their colons removed to prevent colorectal cancer. But that most IBD patients actually don’t need surgery. I was told that my UC wasn’t all that bad and that if I ever did WANT surgery, then I could do that after I was 40, but not before then. So, I believed that the option was not open for me before I turned 40. I was told that I had to be done having children, and that my UC would probably begin to bother me more when I started menopause.
Well…I’m not thirty. And I was nowhere near 30 when my UC started to “bother me”. And I was not done having children when they took out my colon two years ago. In fact, I had been told surgery was not an option so much that when it came down to talking about surgery in a very dire situation I freaked out and almost refused to let them operate. And then in my morphine/dilaudid/zophran, sleep deprived, missing my child, scared of impending death state I heard the word, CURE. Cure? As in, no pain ever, cure? As in, I’ll have energy and strength and control over my bowels again, cure? Cure, as in, I will be a totally new person and I can put this whole nightmare behind me? That’s what one set of doctors told me. But then my amazing angel of a surgeon came in, sat next to my bed and broke everything down to me. And what I found out was, that I wasn’t necessarily getting a cure, but a better solution and a last resort in place of medication.
Unfortunately, there is a battle within the IBD community, a dividing line. Those of us who advocate for surgery and those of us who advocate against surgery being a cure. You, see what I wrote there? These advocates are not advocating against surgery itself, just against using the term cure when talking about surgery. Where do I fall? On both sides. I absolutely believe that people should get a colectomy! I see absolutely nothing wrong with the removal of a diseased, infected organ that is essentially killing the person whose body it occupies. Do I believe it is a cure? No not really. Here’s why.
Yes, the Ulcerative Colitis is gone. As are the daily UC medications. However, if you have Crohn’s as well…that is not gone. And the removal of your colon does not remove UC or precancerous cells in your rectum. It doesn’t remove your arthritis and fatigue. The urgency to go and the pain associated with bathroom visits is gone…unless you have a fissure or the skin abrasions I like to refer to as adult diaper rash. And with a J-Pouch it is sometimes very hard to hold things in or tell that you haven’t held things in. I’ve spoken to people who have hardly any feeling in their anal cavity so they can’t really catch things before they run out…if you know what I mean. Periods…well, let’s just say it feels like you’re going through the last two hours of labor every month. You have to go to the bathroom a lot more than before…a tremendous amount in the first few months. You still find yourself waking up in the middle of the night or early early in the morning to go to the bathroom. And let’s not forget pouchitis which feels very much like a colitis flare up. Now the Ostomy route is a lot easier. However you have a WHOLE new life there as well. The pain associated with the pouch surgery lasts a while. Then there are occasional blockages and obstructions, fatigue, dehydration, hundreds of dollars in medical supplies every month. Skin irritation, leaky bags or flanges, weekly changes, etc etc etc.
Now I say these things, not to scare, but to inform. I had a rude awakening when I was released from the hospital. Yes, I woke up from my surgery feeling SO MUCH better. And I feel better now. My hair has grown back, I’ve put on weight, my teeth have stopped breaking and aren’t gray anymore, my skin isn’t dry, and I’m not as depressed and in pain. Even my arthritis has mellowed out a bit. But when I had my surgery, I was not prepared for the new things that came with the responsibility of having an ostomy or a j-pouch. I didn’t think I would ever have pain, depression or fatigue again. And that is where I was wrong and that is where the word, Cure, can be dangerous. For a few months, I almost went into a deeper depression because I was still having a difficult time with just getting up to get my kid to school on time. Even now I find that having a cramp in my pouch or getting dehydrated easily brings major frustration, because I really want to be cured of this. But the fact of the matter is, there is no cure. There is life with IBD and then there is death. I chose life. And with that I have a new functioning internal pouch that has made life easier and better…but I am not cured.
I think that’s time we start talking about this option, just because you never know where you’re IBD journey will go. When I was diagnosed, my disease was manageable. Research and ask questions. Once you get diagnosed, learn about all your options. Know how it can be managed, and how bad it can get. Most of us that have had our colectomies have had them done in an emergency situation where there wasn’t enough time to understand what was going to happen. Would I have made a different choice if I had known? No, absolutely not! My only choice was to have my colon removed. However, I think that my recovery would have been less stressful and less frustrating if I had known and understood the truth about what was about to happen to me. Ask your doctor lots of questions, make them give you true answers. Then I would hop on twitter and Facebook and talk to some of us Ostomites and Pouchers who are living this post-colon life. The community has grown so much and has become rich with knowledge, love and compassion. It’s safe to talk about fears and ask questions. So do it! Seriously! Come on with it! Tweet me, email me, comment on FB and I’ll get back to you. And if I can’t answer it, I’ll send you over to someone who has had your similar experience. Reach out…we’re here!
Up next, another exciting episode of Bathroom Tales. Starring Mommy, Hippo & Bam-Bam the dog. When we tuned in last week, Hippo threw the shower curtain back on Mommy while she was taking a shower, letting all the cold air in to ask her…could he have some cheerios? Let’s see what happens this week.
Scene: Mommy is in the bathroom after she left Hippo in his bunk bed watching Jake & The Neverland Pirates on Disney Jr. Suddenly, Mommy hears a large thump on the ground, followed by multiple heavy footsteps as if someone is running. Then they stop and not two seconds pass before the bathroom door swings open completely to reveal, Hippo!
Mommy: Jax you didn’t knock!
Hippo, realizing his error, closes the door. Knocks and then opens it up wide again.
Mommy: Jaxon, you knock and then wait. I have to give you permission to come in.
With an exaggerated sigh, Hippo closes the door and knocks ferociously on the door. Mommy sighs and begins to answer when she hears.
Hippo: Mommy, hurry and say, Come in!
Mommy: Come in.
Hippo opens the door wide enough that Bam Bam enters.
Mommy: Jax, do you have to open the door so wide?
Hippo: Oh sorry. Mom this is important, it’s an emergency!
Mommy: What? What is it?
Hippo: Izzy (the female character from Jake & The Neverland Pirates) turned into a mermaid!
Silence passes between the three, as Mommy tries to understand why her privacy has been invaded over a cartoon.
Mommy: You couldn’t have waited until I came out to tell me that?
Hippo: But then she won’t be a mermaid no more because the show is almost over.
Tune in next week for another exciting episode of, Bathroom Tales!