what is life like?

I’ve been so busy lately with things (like being HEALTHY) – I’ve been slacking on getting posts up, responding to any questions on my blog or through emails. Sorry about that!

One question I get the most, actually about 98% of the time I talk with or mentor someone that is living life with Crohn’s or colitis is, “What is life like after you have the surgery?”

If I were to say the first word that comes to my mind, it would be GREAT! Even when I was going through the surgery series, I felt incredible, looked better than I ever had and my health started to take a serious turn for the better almost immediately. Sure, living life with an ostomy was scary and unknown, but sometimes the challenges that life throw at you are given to you for a reason. I never thought I could handle life with an ostomy, but I did! I kicked butt at it. I definitely had struggles and still do, but whenever  I did have harder times, I found someone that I could relate to (mostly my soulmate, Kristin) to talk to about what I was going through. More than likely, she or whoever else I was talking to at the time had or was going through the same dilemma.

I know that at times it can be difficult to open up about what you are feeling when you have IBD. The diseases have their way of making you want to shut down and hide from the world. You have to think about whether or not that’s how you want to live your life. Do you want to let your disease rule who you are or what you do with your life? I didn’t think so. Find a way to deal with what you’re feeling, whether it’s positive or negative.

If you’re having a positive thought about where you’re at in your journey, share it! I can guarantee from personal experience that by sharing how you feel you will inspire someone who may be heading down a similar path.

If you are feeling negative, try not to scare others. Nothing makes me angrier than reading blogs or social media posts from people who live vicariously through their illness. Who post nothing but hospital pictures, or posts about how terrible they feel or how scared they are of an upcoming procedure. I am completely behind being scared and I understand that fully. But, if you are someone’s role model, is that really the light you want them to see you in? I would never want to make anyone feel like there isn’t a light at the end of the tunnel. There’s a way to post even the scariest of situations so that they aren’t portrayed in a negative manner.

So, what is life like after surgery? I can say with certainty that it is different for everyone. We all have different doctors, different diets, different advice given to us, different support systems. I am blessed to have an amazing family, the best group of doctors that anyone could ask for (including my dad) a talented surgeon that saved my life and friends that have seen my darkest days. No matter who you have standing beside you, YOU are the most important factor. Your mindset will ultimately determine the outcome of any procedure or diagnosis. There’s a way to look at it negatively, which is probably easier than how you should be looking at it.

Whenever I answer the question at hand, I don’t think I’ve ever told anyone that I’m doing poorly. Because I’m not. I’m doing great! I sleep at night, get up every morning and go to work full-time. I go to lunch with friends, I eat great food and laugh with my family. I work out, I run, I lift, I shop, I do everything that I’m supposed to be doing at 27.

That’s all thanks to the surgeries that I had, the ostomy I wore and the jpouch that is now inside of me. I’m a better person because of the battle that I fought with my ulcerative colitis. I’m a stronger woman because of the pain that I endured.

Is my diet different? Yep. If I eat a lot of carbs or have anything fried or too many sweets, I feel terrible. That’s all in my control, though. I know what I should and should not be doing and so do you. Common sense plays a big factor in the way that I feel every day. If I don’t get enough sleep I’m probably going to feel pretty bad and more than likely am going to be going to the bathroom more that day. Again, the choices you make will affect your health after your surgeries.

Am I still worried about where the bathroom is? Yes. But I don’t live in fear like I did before, I just like to know where it’s at. I get in the car with no issue. The pain is gone and there’s nothing more freeing than that.

Regardless of where you’re at in your life with IBD – ostomy, jpouch, remission, flare, new medicine, or surgery- always try to think about the positive. You have options and you DO have support. You’ll get through the pain and find brighter days. I can attest to it.

Freedom.

In honor of IBD Awareness Week, I wanted to make sure I took full advantage of a photo-shoot I had with one of my sister’s friends for an assignment she had for a class. Before I had my ostomy, I always hated the idea of them. I thought they were gross and concurred with all of the stigmas surrounding having an ostomy. Which 24 year old girl wants an ostomy? None.

But that doesn’t change the fact that mine saved my life. Without my ostomy, I certainly wouldn’t be here today. When I found out I had to have my ostomy (which is temporary) I was insistent on the fact that I wouldn’t be going anywhere, showing anyone, saying anything about it. Now, I have realized how blessed I am to have a surgeon who is precise enough to complete all 3 of my operations lapriscopically, leaving me with a stomach that is still recognizable. I am also blessed to have the opportunity to have my ostomy reversed, to have a platform to help others that may be struggling with the decision to have the operation.

I am no longer a prisoner of ulcerative colitis. My ostomy was the key that unlocked my jail cell.

My biggest fear.

I never thought I’d be flaunting my ostomy.  I see so many people bravely posting pics of themselves sporting their pouch.  I wish I would have looked at those pictures before my surgery, they would have made me feel a lot better.  In order to move forward and show that this doesn’t make me scared, embarrassed or shameful, I want to share my new body and the little pouch that saved my life.

I hope that many girls my age or younger see this photo and realize things are never as bad as they seem.  You will get your body back (with some work).  When something so serious happens to you, your true colors and bravery shine.  Embrace that and remember, things could always be worse.

HA. CPD is forced to publicly apologize.

Man, this guys must have really gotten it bad after his ignorant comments that he made about ostomies went public.  I received 2 more emails after his, one from his boss making sure he apologized correctly and another from Doug Yakich who made a petition on Change.org for people to sign to express their feelings towards the CPD.  In only 12 days they were able to receive enough signatures to enforce the public apology from the police department.

Follows is the email that I received from the lieutenants boss:

Hello,
On behalf of Laure Quinlivans office we are following up about the officers comment that was offensive to those with ostomy. Commander Russ Neville sent out an email trying to explain the comments and reconcile community relationships with the police department. Please feel free to forward us any comments.

Respectfully
Barbara Niederreiter
Intern
Laure Quinlivan
Council Member

I replied, explaining that I did receive an email from both of the officers, including a personal one from Richardson.  I appreciated the apology and hoped that he learned from his uneducated words.  I also asked them to please inform Richardson that I do not, in fact, walk with a limp due to my ostomy.

I’ve probably been to the gym more times 7 weeks after my 1st surgery then that man has been his whole life.  As a matter of fact, just yesterday I completed 150 crunches and 50 push-ups.  Should I write Richardson back and challenge him, or should I just send him a box of donuts instead?  Cops like those, right?  Isn’t that the stereotype for them?  Especially fat, ignorant ones.

Also, please do not group me into the same people as their druglords they seem to have running around that city.  I have made the right decisions in life, went to school, received an honor’s bachelor’s degree and have a marketing job.  Just because I have to wear an ileostomy for a few months doesn’t make me the same person as whatever idiot Richardson is basing his claims off of.

Regardless, I am very pleased with all of the public support that people like me received.  I hope that police station didn’t sleep over the comments made.  I think that Richardson should feel lucky to even have his job.  Congrats and thanks to everyone who participated in this situation!

Most of all, thank you to WCPO for reporting on this man who deserved what he got because of his comments.  I don’t think they owe anyone an apology, they were doing the right thing by informing and reporting, which is their job.  Richardson, in turn, was not doing his job by offending the citizens he is supposed to be protecting.

Here is the link to the letter from CPD and Greater Cincinnati Ostomy Association:

http://www.mygcoa.org/index2.html

Apology email from Lt. Richardson of the CPD

This morning I received a personal apology email from the police officer that made the ignorant comments about those living with ostomies. As I sincerely appreciate the effort, I can’t seem to forget the harsh words that the police officer ignorantly spoke about those who wear an ostomy. Here is his reply to my email that I sent to most of the government officials in Cincinnati:

Ms. Bogdan,

Councilmember Quinlivan forwarded your email about my comment on WCPO.

I was disappointed WCPO decided to make their news story about the colostomy bags. After an hour long interview about a comprehensive juvenile violence reduction plan, they took that one bit and featured it. The fault isn’t theirs. It’s mine. I said what I did thus giving them that opportunity. For saying and doing that I am responsible and apologize. My intent was not to demean ostomates. I wish I had said it a different way. Neither I, nor anyone else from the department, is going to use the thought of colostomy bags to scare teens. I was referring to a presentation local doctors have used in the past which includes photos of many of the medical consequences of violence. I have asked those doctors to make the same presentation here. Colostomy bags were just one of many possible medical outcomes of a violent lifestyle. I thought of colostomy bags because we have a particularly pernicious drug dealer here who, as a result of being in several shootouts, lost an eye and wears a colostomy bag. My goal was, and remains, to appeal to teens’ sense of vanity and try to prevent behavior which leads to serious medical consequences.

Our youth initiative had speakers from many perspectives: a police message, a medical message, a Juvenile Court judge, community outreach and faith-based representatives. Unfortunately, all the publicity has gone toward the colostomy bag comment. My goal wasn’t to demean ostomates at all, only change behavior of those who can makes choices about their future.

Respectfully,

Lieutenant Joe Richardson
Cincinnati Police
District Three, First Relief
3201 Warsaw Avenue
Cincinnati, Ohio 45205

Much appreciated, but obviously still very lost about what it means to have an ostomy for some. I have made correct choices in life. I never did or sold drugs, never turned to violence to solve problems, so I still have trouble understanding why I had to be some sort of “example” to those who have made poor decisions. I hope that others that were deeply offended by his words, as I was, can find solace in this email.