I recently asked those who are dating someone with IBD/Ostomy/Jpouch (who started dating after their partner was diagnosed or had surgery) to write a guest post for me about why they didn’t run screaming when they found out about their IBD/Ostomy/Jpouch. I wanted the stories from the other side. Here is one that I got, if you’d like to share yours email me at Jackie@bloodpooptears.com.
A couple of weeks ago, as I was preparing to head out of town for a work related trip, I noticed a post on the Girls With Guts Facebook page and wanted to respond. I did not respond at that time
for two reasons. The first reason being that I did not have time at that point to write my response as I needed to be driving out of town to get to my destination. The second reason was that I was not sure if it would have been proper for me to respond since I was newly introduced to the IBD and ostomy world.
First, let me explain who I am and how I am connected to Girls With Guts. I am the Vice President of a car club in my area and a couple of months ago a new member joined my club and we started talking and she has since become my girlfriend and stolen my heart. She means the world to me and I adore everything about her. But let me get back to the story at hand. As we were getting to know each other (and before we had actually met) I had become Facebook friends with her and saw her connection to Girls With Guts and ostomies. Not knowing anything about IBD or ostomies, I did some Google searching on my own to read up and learn more about it all and while I still do not know or understand it completely, it did give me a glimpse into what it was all about. It also did not in any way deter me from wanting to get to know this girl further and then pursuing a relationship with her.
That now brings me back to the original point I was making about this post that I saw on the Girls With Guts page. You see, it was a girl with an ostomy saying that she was having a selfimage issue and not feeling beautiful. I wanted to answer her back and let her know that real beauty cannot be hidden or taken away by anything on the outside. From the posts and pictures I have seen, you have many beautiful women and none of them should let an ostomy or anything else take away from that beauty. A real man (and yes I realize that this world does not have too many real men, but rather an over abundance of males) will see that beauty and not care about those things. I got into a relationship with my girlfriend already knowing a bit about her ostomy and some of what it entails, but it didn’t matter. The moment I first saw her she was beautiful to me. I feel in love with her and had a very physical attraction to her as well as a spiritual connection with her. To me, she is one of the most beautiful women in the world and I tell her so every chance I get.
So this quick little post was written in response to that post I saw on Girls With Guts. I wish I would have replied but missed that opportunity and told my girlfriend about it and that is when she told me that Jackie was looking for letters like this for her blog. I just want you women to know that you are beautiful and any man that judges or states otherwise is not worth your time or consideration. Do not even give him a second look and just keep your head held high and find a real man. They are out there and they will adore you and everything that makes up you.
I’ve been following Jackie’s blog for awhile now and after her recent post about dating with jpouch and the negative comments she received after it went live, I felt the need to step in and give my perspective on dating as a permanent ostomate.
From what I’ve seen and heard, many ostomates, male and female, are concerned about how others perceive them. We worry that our appliance can be detected under our clothes or that if people see our bags, say if we wear a swimsuit or something similar, then we’ll be labeled as “abnormal” or “gross.” For those of us who are single and interested in dating, we have additional concerns: Will we be seen as unattractive? Will a prospective partner not want to have sex with us? Will dates be freaked out?
Speaking from my own experience, I have never once (that’s right, not a single time!) had a date or sexual partner react negatively to my ostomy. One guy knew I had one because of our mutual friend. When we became intimate, I asked him, “so you really don’t care that I have an ostomy?” and he responded, “why the hell would I care about that? You’re beautiful.” Another guy I met online and after a few dates I told him about my ostomy. His two questions? Would sex hurt my ostomy and did my vag still work. When telling another partner, he just held my hands and said “an ostomy isn’t who you are, it’s just a small part of you, and regardless, I want to know all of you.”
Maybe my experience is abnormal, I’m not sure. But I do know this: when I tell or talk to people about my ostomy, I come across with confidence. I don’t make a big deal out of it, mainly because I don’t see it as a big deal. Aside from the three people mentioned above, I’ve been on multiple dates with others whom I did not become sexually involved with, but who certainly tried their best to get in my pants – all the while knowing I have an ostomy.
I don’t know how other single ostomates tell dates or partners about their ostomy, but I like to keep my approach simple. Once I find an appropriate and casual segue into the conversation, I say something like this: “So I got really sick a few years back, have had some surgeries to make me better, and one of them saved my life. The result of that one is that I now have an ostomy. I don’t think it’s a big deal and neither should you, as it really doesn’t affect anything.” Most of the time my date won’t know what an ostomy is, so I tell them very briefly and will sometimes show it to them so that they can see what a small part of me it is. The typical response? “Is that it?” or “That’s all it is?”
I’m not trying to downplay the negative experiences of other ostomates in the dating world as I’ve heard stories of dates reacting poorly, but I do have to wonder how the topic is being talked about or explained and whether the ostomate is coming across as confident or insecure. Perhaps a few readers can chime in and detail their dating adventures instead of just attacking Jackie for not understanding the permanent ostomate’s experience since she has a j pouch? I’d be interested in understanding what other ostomates are going through….
Also…I live in Michigan, where the job market is coming back but still isn’t particularly strong. Before I graduated you could often find me talking to my co-workers at school having mini mental breakdowns about how I’d pay bills and how I’d never find a job. A week before I graduated I was approached by the university about a full time position, and I literally thought that I had been saved by some divine intervention. Rather, I had made a strong impact on my co-workers and had done my job well, so they created a position for me to keep me on board. In addition to that, they also gave me a temporary 3 month contract so I could continue to work while they pushed the lengthy university paperwork through. Right at this same time, I had my practicum site ask me about doing some temporary work for them, because again, I had showed a strong work ethic and a knack for archives. Much to my surprise, I was also approached by another company who had received my resume from a friend. This company had nothing to do directly with Libraries or Archives (what I was getting my masters in), but they were essentially an internet marketing company. I love social media, and I know marketing but on paper, I don’t have a ton going for me. And here is the kicker folks…they wanted me because of my online work with Girls With Guts and this website.
Let me write that again. A potential employer wanted me because of my online work with Girls With Guts and this website.
They didn’t pass me over because I talk like a trucker, or because I have a butt disease and a brain disease and because all I do is share the consistency of my crap. They wanted me because I showed that I know the internet marketing space and how social media can be utilized to make an impact. All I have been doing, is what I love, and what I didn’t realize, and what you should all realize is that people are watching you all the time when you have a presence online. They are watching your triumphs and your faults.
So what did I do? I essentially had 3 job offers on the plate. Read that again. 3 job offers despite my health history (which they all were very aware of, in fact we talked about it during interviews), and despite this very blog. Take a moment and let that sink in.
So what did I do? I took the job at the university because I loved that job and the benefits were amah-zing. But I only worked there a month before I quit.
Wait, what? I had a stellar job, with amazing benefits, and stability and I quit after a month? I sure as hell did. Why? Because I got offered a better job.
A job so good that my boss at the university told me I HAD to take it! And here is where the world comes full circle people. Remember how I said someone is always watching? Last year, I had a concerned father email me about his daughter who was going through the same thing many of us had experienced. After some back and forth, we realized that I had already been in contact with his daughter and we had realized that they lived within miles of my house (small world!) and I met her for coffee. I continued once in a while to converse with her father when he had a question or concern. Through a strange series of events, I ended up at a football tailgate with them and we all had a really great time. A few weeks ago he approached me with a job. Not just a job, but a really good job. I was really happy and comfortable at the university and nervous about switching careers essentially into a field I was unfamiliar with. After many talks, he told me that he had monitored my internet moves, not in a creepy way but how I interact with you all, how I use social media, and how I communicate my message to the world through this blog and Girls With Guts. He really showed me that my hobbies were in fact, marketable skills.
So I took the job and I started last week. And now I work for a giant company, with amazing benefits for anyone but particularly people with chronic illnesses, in a position that will challenge me but also reward me with new skills and relationships, for a boss who knows probably more about me that he would ever want to, but more importantly who understands everything.
So do you see my point? The very condensed version is that this blog got me a career. And to be clear it is a very professional career, at a company I wont mention because while my boss is a-ok with me talking about my butt, I don’t want the company as a whole to come up when people Google my blog/name.
So the long and short of all of this is… be a good person.
Do good work. Don’t be afraid to put yourself out there, and you might just land a dream job because you told your story. In my mission to help others with IBD and MS, I have reached a lot of people. And my point is that you never know who is watching, and the people you want in your life will commend you for sharing your story and being honest.
What I’ve learned through all of this is that I really wouldn’t want to work for someone I had to hide my past from, but I’d rather work for someone who respects me for the journey I’ve traveled. For me that is what being a true activist is all about. I understand those who write anonymous blogs, but at the same time, I think they are doing themselves a disservice and a disservice to their community. As an activist, I do my best to set an example, and I would feel like a fake if I hid who I was and what I am passionate about.
I am not so naïve that I think what happened to me can happen to everyone else. I don’t think there are concerned family members reading blogs just waiting for the chance to pounce and offer up life-changing careers. But even if it doesn’t result in a fantastic career for you, do you see how you always will reach the right person at the right time? I think that is what it all comes down to. Timing. Karma. Fate. Whatever you want to call it. I do think that if you put good in the world, then someday, somehow you will get good back.
So, thank you boss man, for taking a chance on me and helping to prove to a whole community of people that there is life beyond chronic illness.
I wanted to talk to you guys about employment and how to tackle the medical history exposure part of it. I am only going to speak of my experience, as that is what I know best.
More than likely, I’ll be breaking this post into two parts because if I don’t, I know you guys won’t read it all, and this is about to be some inspiring shit ya’ll.
So the first part is how I’m going to tell you that I totally understand employment and financial woes.
Before I was diagnosed with UC, I was working a mediocre job that I liked, but didn’t love. It paid my bills – barely – but I had enough money and freedom at my job to live a comfortable life. Then I started to get sick. And then I got sicker.
My job performance lacked and for a while my employer understood, but as I got sicker and I wasn’t as good of an employee as I previously was, their compassion dwindled. I think they thought whatever was wrong with me would go away, but when I had to leave work to go to the ER unexpectedly, which would turn into a week-long hospital stay… they weren’t so understanding.
Then the complications started. The long and short of it all is that I eventually got fired. Yes, I know that is technically illegal. But I was too poor and way too sick to do anything about it at that time. Besides, it opened up the door to grad school. The most important part of this was that I knew that I’d not be able to get another job at that time of my life. I had at least 2 surgeries approaching, and no one would ever hire me if they knew that.
Not to mention that I had already posted to the world that I had Multiple Sclerosis, and by this time I was already telling the internet about the graphic details of my bowel movements. Sure there have been moments where I thought about going anonymous, or perhaps even stopping blogging, in the fear that I would always be tainted by the healthy history I’ve posted on the internet.
But honestly (and this will sound super cheesy), I felt like it all had a bigger purpose. I knew I was helping people from the emails that I would get, and more importantly I was helping myself. I have posted my biggest ups and the deepest downs on this blog… you guys know it all. And most of the time I feel like its just you and me butt buddies. But I forget the harsh reality that the world is always lurking. And frankly, smart employers are looking for potential employees by Googling them.
There is that old adage that “If they won’t hire you because you’re sick, you don’t want to work for them anyway”. Right. Thats easy to say when you don’t need a job. The reality is that there is stuff on the internet since 2006 about my medical disasters and much more now specifically about my issues with my diseased ass. Oh..and there is that. Have you guys noticed my vocabulary? Its not like I can use this blog as a writing sample, and there is the whole ‘wanting to die’ thing that I so publicly pushed to the world. Sometimes I think I paint myself as a diseased, mental case with a tiny vocabulary.
If I weren’t me, I would have thought that I’d never get a job. At least that’s what I thought until about a year or so ago. I was still in grad school and I had a former teach approach me about a graduate student assistant position through the school. I wasn’t even looking for a job, but it paid my tuition so I said I’d take the interview. Well…I nailed it. I got a job offer that day. You guys, I felt on top of the world. For the first time since I was fired, I was working a REAL job that wasn’t under the table, working on REAL projects and making a REAL “paycheck”. Well…at least this is what I thought. The reality is this is the first time anyone had wanted to give me a job in a long time, and the first time I felt worthy of a job. It did scare me that they’d look me up and see that I was some degenerate swearing butt talker. I had my family telling me I “deserved” the job, but I didn’t feel like that. It was only a part time job and all I could think about was, “Can I even do 20 hours a week?”. But I had this shining moment where I realized that I didn’t get that job because of anything other than they thought I could do it and that I brought something to the table. This GSA position was like a real job, and I wasn’t just a gopher. I did that job well for a year until I graduated and then had planned on trying my damnest to find another job. During that year, I worked hard, played hard and met some fantastic co-workers. No one there knew I was sick, or had been sick.
And when I decided to tell them all, you know what they did? Told me that I was impressive. They didn’t say that my job was on the line or anything negative but that despite my illnesses they respected me that much more. I must have impressed them, because right before graduation, they offered me a full time job at the library. And university jobs are no joke, we’re talking like a real grown up job, with grown up money and benefits and no one gave half a shit about my health history. IN FACT…most of my co-workers donated to Girls With Guts.
I want to also tell you guys that during this time I had many conversations with friends and blog readers about finding employment after you post your crap (literally) to the world. After starting Girls With Guts, it became my goal to work for myself – that way I never had to worry about who my boss was and what would happen if I got sick again. However, working full time for your own non-profit is incredibly difficult. After graduation I had to be realistic in my job prospects…I had to find a job that would pay my bills, and give me some flexibility in my life to be able to run GWG…
As usual, I’m about 3 weeks late to this party. I tend to avoid controversy while its happening, and then right when you think its over and everyone has forgotten…BAM. Here I am all, “I have an opinion and I’m sure its going to piss you off”. You all know what I’m talking about, right? The CCFA ad campaign.
I’m not going to be delicate with this one.
I don’t understand what everyone is all butt hurt about. Period. Its as simple as that. Don’t we have anything better to do than bitch about the first ever IBD awareness campaign? This all goes back to my theory and post about Invisible Awareness week. This is marketing….real marketing. Perhaps its just because I am a marketing professional but I understand this campaign. I’ve seen many people say that this trivializes IBD. People asking “Why aren’t they showing what its REALLY like to have IBD?”
Well…here’s why: Its scary.
If you want any kind of response from the masses you can’t scare them. Think about other large disease awareness campaigns, like Cancer and AIDS. Do they show you people literally dying in hospital beds? No. Why? Because its fucking scary. Commercials for St. Judes, show kids with cancer…in the hospital but happy and smiling. Laughing and hugging cuddly teddy bears. If they showed kids post their chemo treatments, when they are sick and puking their guts out do you think people would be receptive? No.
Do you think the families of those children are upset that the “real” side of cancer isn’t being shown? Hell no. They are happy to get donations to St. Jude to help them care for their children. Lets talk about those commercials that ask you to donate your money to the starving, sick kids in Africa or wherever. They give you a sob story about children that can’t afford food or clothes, and who have no parents or education. They show you sad, adorable children. Do they show you the reality? Children emaciated and literally dying in the streets? Do they show violence over limited food supplies? No. Why? Its scary.
The point of the campaign from the CCFA was to raise awareness. Every ad had the letters “IBD” on it and if nothing else its getting that term to the masses. And quite frankly, everyone pissing and moaning about it, just raised more awareness for IBD because your blog posts, and reposts of those photos just make the terms show up more in Google. Perhaps behind the scenes, they were hoping this campaign would be controversial. Controversy raises conversation, and conversation raises awareness.
Think about this campaign as a first step. It is step one to telling the world about IBD and telling our stories. You can’t scare the world or else they won’t listen, won’t donate, and won’t give a crap. I asked a few people I know who don’t have IBD what they thought about the ads, because everyone keeps saying “People will think that this disease revolves around the bathroom” (News flash: It does). Well the first person I asked, said, and I quote,” I don’t get it, so those people have IBD?”
I think we’re all a little sensitive to the whole “being tied to the toilet” thing, and as a result we think that everyone else must think that IBD is a toilet disease. That’s why I tell my story and why you should too. Talk about it…tell people what its like. Why does it seem like this is one of those “I can make fun of my sister but you can’t” things? In the IBD community we make butt/toilet jokes all the time. We do it because its funny, and because its a coping mechanism. I learned to laugh at this a long time ago…but here’s the thing. The ads don’t make me laugh. They aren’t funny. No one is making fun of us or trivializing anything. Why can we talk about our realities (being stuck in a stall) but no one else can? And if you say because people will just think its the same as IBS then I’ll drop kick you in the face because I have NO Idea how anyone can deduce that from these ads. “IBD” is written all over them, and the info on the bottom gives more info about IBD. I have no clue where the hell IBS comes into this, and I think its just another reason for people to complain about things they can’t control. Was every IBDer consulted on these ads? Nope. Should they have been? Nope. Why? Because you can’t please everyone.
Do you really think that a full account of what IBD is like can be depicted in an 8×10 printed ad? If so, make one. Hell, I’ll fund it and shop it out to ad agencies if you think you can accomplish the following:
A non-threatening or scary account of life with IBD
Information/stats/facts about IBD and what it can really do to your body
Images depicting IBD in a non-offensive manner and in a way that won’t embarass patients or viewers of the ad
Resources for those who have IBD
Individual stories about how it affects people differently
Information about how IBD can affect your mental state in addition to your physical state
A list of all other ways IBD can affect your body
Information about PICC lines, TPN, NG tubes, surgery, ostomies, and JP drains
A list of all the side effects of the medication
Gee that sounds like an awful lot, right? This is a list that I complied from those who are complaining about these ads. I’m telling you right now, its impossible. You cannot fit all of that into a single marketing campaign. Since you can’t, does that mean we shouldn’t market IBD at all?
With all due respect…fuck no. I want people to know about my disease. I want them to know its name. I want them to know that it DOES involve a bathroom so when students in a classroom bolt out the door, their teachers don’t punish them. I want people to know that IBD can alter a life. To me…that is a good starting point and these campaign do exactly that.
The NEXT ad campaign perhaps can give more information. Yes…I said the NEXT one because I’m hoping this is the beginning of many campaigns, campaigns that will make IBD a household name and one that will no longer keep us in hiding. So that we can Escape The Stall…whatever your stall may be.
I think that the CCFA took a risk on this campaign and I think it was worth it, and if you don’t like….fund your own damn campaign or find someone to do it pro-bono. Go find your own celebrity with IBD and have them jump on board to be your spokesperson because that is what awareness takes unfortunately. You have to make your disease sexy. Right now IBD is not a designer disease…but with this campaign it can be. That sounds shitty, right? Well that’s marketing people.
I know many people feel like this campaign depicts our disease in a negative light. Whelp….get over yourself. Period. This campaign is not about you and its not about me. Why? Because it affects us all differently, so one blanket campaign is not going to tell your story or mine. Its a collective voice just telling the world that IBD exists and a lot of different kinds of people live with it.
I’m glad that they took a risk, and put these ads out there. All that I see with these ads is a chance for conversation. A chance to talk about it, share your story, and raise awareness. Whether you like the ads or not, they have done exactly that.
Traveling with a J-Pouch can be nerve-racking and a tad more difficult than it is for healthy-coloned folks, but from my personal experience, J-Pouch travel is infinitely easier and more pleasurable than traveling with active ulcerative colitis. I would compare traveling with UC to getting a colonoscopy with absolutely no pain medication or anesthetics while traveling with a J-Pouch is like getting a routine pouchoscopy.
As a comedian, I spend a great deal of time on the road. My last UC flare began in the spring of 2008 and continued until I underwent my first surgery in December of 2010. Even though I feel incredibly grateful that people pay me to tell jokes, my “business” trips were not that fun during those two and a half years. Often, to get to my gigs, I have to take two flights, then rent a car, and then drive two to four hours to reach my destination. Doing these marathon trips while experiencing intense stomach pain and defecating 30 times per day was pretty brutal. There would be times when, after the plane landed, I had to push old women aside as I made a mad dash to the nearest toilet. There were tons of uncomfortable and worrisome moments, but a few will always stick out in my mind.
I’ll never forget the time I was driving from Albany, NY to Canton, NY, when I was in the middle of nowhere and I knew that I only had minutes (if that) to reach a restroom. I’m sweating, clenching every muscle I could possibly clench, and envisioning the worst-case scenario. Thankfully, I spot a gas station, do that uncomfortable walk/run while attempting to keep my butthole closed and just make it to the facilities, barely avoiding having to get the rental car detailed. I know I’ll never make a more satisfying trip to a gas station bathroom. Then, there was the time when I was driving from Milwaukee, WI to LaCrosse, WI and faced a very similar situation. On this occasion, I found myself running through a fancy hotel, hoping to make it to a toilet before I soiled the marble floors of the hotel lobby. I think many of you know that having UC involves a series of close calls and unfortunate mishaps.
A few months ago, I was asked to go on an overseas tour of the Middle East to entertain the troops during the holidays. I would be going to Lebanon, Jordan, Turkey, and Egypt. I immediately accepted and was excited about the opportunity. Since my J-Pouch surgeries, I have resumed my frequent travel schedule and I haven’t had any real problems while traveling. However, all my trips had been domestic and I was aware that I had to take extra precautions with international travel. I would be going to places where the food and water have wrecked the stomachs of people without my issues, and I would be visiting countries where there probably wouldn’t be a surgeon or doctor around who knew anything about J-Pouches.
I returned from my twelve day trip on Friday, and I’m happy to report that I’m doing just fine. I made sure to pack everything that could help me if any J-Pouch related issues arose. I brought Lomotil, Immodium, Cipro, Protonix, and my butt-burn ointment. Because I performed at the American embassy in Lebanon and on military bases in Jordan, Turkey, and Egypt, I had American medical personnel available if I ran into any issues. Also, the military has evacuation plans in place if you run into a serious medical problem so that they can get you to a hospital that can provide adequate care. I avoided drinking the water and tried to only eat foods that I thought were safe.
My trip wasn’t completely problem-free. I experienced some stomach pain that was alleviated after I popped a Protonix and got some serious butt-burn. However, I was more than willing to experience some butt-burn in exchange for such a remarkable, fun, and fulfilling trip. I was able to snorkel in the Red Sea, visit the place where Jesus was baptized, do some karaoke with Russian tourists in Egypt, and joke around with a two-star general from New Zealand. More importantly, I was able to meet and entertain hundreds of troops who were incredibly appreciative to be able to see some comedy while they were away from their friends and families over the holidays. So, even though I became a little worried when the troops stationed in Sharm Al Sheikh, Egypt told me that the food they ate there had given them what came to be known as the “Sharm Shits”, I was confident that the “UC Shits” were much worse and I’d survive if I was to be afflicted with this unfortunate ailment.
If any of you are contemplating any sort of trip or excursion, but are concerned about traveling with a J-Pouch, I strongly encourage you to go on your adventure. Although I still worked as a touring comedian while I had active UC, ulcerative colitis robbed me of so much and kept me at home and in pain way too often. Now that I have a J-Pouch, I am unwilling to let my health situation deter me from living the life I desire (I try to avoid doing anything too stupid, though). I feel like I’ve been given a new opportunity and another chance to truly live. I want to make sure that I take full advantage.
Today is World Ostomy Day, and it has brought up some interesting emotions and realizations for me. I want to share some things with you. Intimate thoughts, and unflattering pictures.
That picture is me before my first surgery. Very sick. Very overweight from steroids. Very scared. Very VERY horrified I’d have to have an ostomy. VERY embarrassed of myself and my life. Ashamed. I wrote about what I had expected my ostomy to be like here. I wrote that I hoped I’d look back with fond memories, and in fact, I do. Having my ostomy taught me humility, but more importantly it taught me to laugh at things I couldn’t control. I remember trying to maintain a positive outlook and I just kept telling myself, ok its just 9 months. Its JUST 9 months. 9 Months. Thats it, just get through it.
But then things started to change. Slowly, I wrote this entry just 4 days after my first surgery, and even here I was writing about how I didn’t like my ostomy, but I already felt better. I remember it felt so foreign on my body. I didn’t want to touch it or hear it, or see it, and if I heard that plastic crinkle it just reminded me of the bag I was now stuck to.
It seemed like it took forever for Surgery #2 to get here. There was 6 months in between surgeries, and a lot happened in those 6 months. I tried to return to work, but just couldn’t seem to get my head in the game. I lost my job and my pending time off didn’t really help my case either. I didn’t know a soul with IBD and I desperately searched the internet for friendly words and advice and the only place I really found to be helpful was Jpouch.net. You see back then, HONESTLY, there were 2 websites about jpouches on the internet. We’ve come a long way since 2010. I found a friend, Brevin, who told me about Camp Oasis and how he’d just volunteered, and I thought well, that sounds cool, I’ll look into it. I contacted my local CCFA and had an interview to be a camp counselor which literally consisted of my crying in our directors office because, for the first time ever, I was in the presence of someone who understood how lonely it was. She was telling me about camp and how the kids who come there feel lonely and isolated and that camp was a safe place for them. And I just lost it because I was desperately searching for something like that in my life. My first year at camp was interesting. At the time I really didn’t see how magical it was or how it had changed me. I even wrote that it wasn’t as good as I thought it would be. I didn’t leave with new best friends. I didn’t really leave any different than I had arrived…or at least I thought. What I didn’t know, and I didn’t see was that camp had changed me and empowered me in ways I never even realized. And I would really need what I learned there when my second surgery came and went and was unsuccessful. That first year at camp wasn’t about the people that I met, it was about what I learned about myself and that is what I took away.
Surgery #2 was supposed to be my second step and I was supposed to get a loop ileostomy and have my jpouch created and put in place to heal for another 3 months and then I’d be done! That didn’t happen and I was devastated and depressed and yet again alone. At that time, I had you guys. I had this blog and that was really it. I didn’t really connect with my camp friends that first year, and other than my family, I was so devastated. Thats the only word I can think of to describe how defeated I felt. I thought colitis was still winning and I just didn’t know what else I could really do at that time but crawl into a hole and stay there. And I did. For a long time. But I knew that if I wanted a jpouch someday, I’d have to work for it. Literally, I had 6 months and 40 lbs to lose before my surgeon would even try again. So when I could, I got a personal trainer and started working out. I WOULD have a jpouch. I WOULD get through it. And I did. I worked my ass off literally. I worked out like it was my job and I learned how to work out with an ostomy, and I learned how to talk about having an ostomy and about my life more in person. With real people not just to the internet. I explained my life and my ostomy to my trainer at the time and while I could tell he didn’t really get it, he still encouraged me. He wouldn’t let me say “If I lose the weight”, he would say “When you lose the weight”. He honestly taught me an amazing lesson in positivity. He taught me how to picture what I wanted and that the mental game is more than half the battle. It IS the battle. He is still my trainer today, and has turned into a really good friend. A friend that puts me in headlocks on a weekly basis, isn’t afraid to tell me when I look like shit, and make me work really hard. But a friend that taught me how to believe in myself, and that if I pushed, my body could do it. I could do it. Again, I didn’t know I was learning these things at that time, but I was, and these are skills I still have now.
Surgery #3 came around in March 2011. I did it. I lost the weight I needed to lose. I drove my ass back to Cleveland and I walked into Dr. Remzi’s office and I was ready. Let’s do this. I was never more prepared for a surgery in my life. I was mentally strong, and physically stronger than I had been in over 2 years.
The surgery came and went and was flawless. I left Cleveland in a timely fashion and felt like a damned rockstar. Until a day later when my stoma separated. And I have never been more horrified in my life. I had also been fighting that nasty ulcer, and that combined with the separation made me absolutely terrified. Again…I felt defeated. Would ANYTHING work properly? Would I ALWAYS have problems? So back to cleveland I went. Defeated. Frustrated. Angry. Depressed. But this is why I learned that sometimes, you don’t have a choice. You have to keep going, and trying because there is not another option. And as much as it sucks, you pack up everything you JUST unpacked, you call your mom crying, and you ask her to come over help. You learn to ask for help. You let you mom make phone calls for you, and then you have your Dad come pick you both up and drive you 4 hours right back to Cleveland. I think I cried the whole way there because I just couldn’t think of anything else to do. But right there, in that time, I learned how amazing my family was. I mean I knew it before then, but it was moments like this that I knew I’d never be able to do it all without them. I also learned that no matter how old I was, there would still be times that I wanted and needed my parents to come to my rescue and that it was ok to ask for their help and to depend on them because sometimes they wanted to be needed too.
So after that got taken care of, I went home mentally exhausted, but at the same time I knew that if I just made it until June, I’d have my takedown. I just had to make it 3 more months. And then I had an MS attack that took my vision and all of my optimism. I was told I’d have to push back my surgery…again. And this my friends, is when I lost it. Right there, that was my rock bottom. Physically and mentally overloaded and after years of just pushing through, I caved. Everyone has breaking point and that was mine. I retracted into myself, I stopped answering the phone, going places, eating. Everything. I learned why people choose to die over choosing to keep going. I learned that I had that choice too and it took me a while to choose to keep going. I had tons of support from everyone here, but at that time in my life, I had to choose to live on my own.
And I did.
During all of this I also found a new surgeon because I was having problems with my surgical team at Cleveland. And then…it was June. My takedown was scheduled for June 6th and when June 1st hit I had this mini identity crisis. I was so excited to take the next step in my IBD journey and try out my jpouch that I had worked SO hard to get. But at the same time it was like diving head first into the unknown. It was like my first surgery all over again, I was scared, and nervous, and doubtful that it would even work. I took tons of pictures of me with my ostomy because I wanted to remember myself in that place. Happy. Healthy. Confident. Proud. I wanted to remind myself that if I could feel this way with my ostomy, that I could take on the world with my jpouch.
I never posted some of these pictures, because its one thing to be confident, its another to post half naked pictures of yourself on the internet. But you know what internet, I look back at these and I see progress. I see a body that I worked hard to get, even though it wasn’t perfect. I see scars that are healing nicely. I see that I was starting to build myself back up.
Surgery # 4 was different.
I was so prepared for it. I was so ready and I thought it would be easy peasy but it wasn’t. It was a difficult recovery. But when I woke up in my bed the first thing I did was reach down to feel for my bag. And it wasn’t there. I didn’t feel relief. I wasn’t super happy. I actually mourned the loss of my ostomy a little. For the next few weeks I kept reaching down to touch my bag, or adjust the stool. I had created all these habits from having the ostomy, and I never even realized it. It was almost like a nervous tick, I just did things without even thinking about it, and now…I didn’t have to. It was weird. The other day I was actually thinking about how fast we create habits…and then how quickly we forget those habits. I probably stopped checking my “ostomy” just a few weeks after surgery. At the time, I felt like I’d always be checking for it. So quickly we forget.
I don’t want to ever forget. I remember my ostomy like I remember an old friend. I learned a lot from it even though it caused me stress and frustration. I am thankful I had it, because it saved my life. Having my ostomy introduced me to so many new people, and put me in many new situations that I would have never been in. IBD changed me, but I think having an ostomy molded me. It helped turn me into this person who I think is pretty great. Like I said, my ostomy taught me humility, but it also taught me how to be proud of myself and my accomplishments. I learned about my own personal drive in life, and my passions. My ostomy took me to new places, and I’m not just talking about an OR table, or comedic situations that would make that scene from Bridesmaids look like a disney movie. I’m talking about the places I’ve gone, the people I’ve met, and the places that I went in my own evolution.
Today is World Ostomy Day, and on this day every year, I’ll remember how I got to where I am. I actually kind of wish I had an Ask Me About My Ostomy shirt because I am more than happy to tell anyone about my front butt that saved my life.
So now that Invisible Illness week is over I feel like I can sigh a sigh of relief. I have to be honest, I hate Invisible Illness week.
But Jackie, you have multiple invisible illnesses, shouldn’t you be a cheerleader for people like you during this week?
Yes. I should. I am always a cheerleader, but frankly during Invisible Illness Week, the world gets inundated with people who just whine and complain about whats its like to be us. It is blog post after blog post about why people don’t understand and how hard it is to be us.
Almost NO ONE takes this week to talk about invisible illnesses and educating other people. You rarely see the blog post talking about how a life that changed for the better because of their illness. I agree that this week is a good time to explain to the rest of the world what is it like to live with an illness, but part of our job as patients, is to market that information. This week should turn us all into marketing professionals. We should be marketing our disease to people. Marketing is about creating interest and its an opportunity to educate. If you just sit around and whine about how bad your life is, no one wants to buy your product. Instead you have to be honest, open, upfront, but without all the “woe is me” bullshit.
Frankly I don’t think there should be a week about invisible illnesses at all. I think we should all be out there every day advocating for ourselves and our illnesses. Posting a graphic about the week and how hard it is to be you, once a year, doesn’t raise awareness. It makes people hide you in their news feed.
And don’t even get me started on the “spoon theory”. If there was one piece of illness propaganda out there, it’s that. It has been the catalyst for all people with chronic illnesses to complain about their lives. So take your spoons and shove them up your ass. Stop whining.
Everyone is allowed a pity party. I have mine. I’ve had plenty of them right here on this blog. But every post I make is not about how hard is it to be me. It’s not about how people just don’t get me. It’s not me making excuses about how my illnesses hold me back. A pity party is what you get to do after you have a bad day or experience. It is not the state you should be living your life in. You have a chronic illness. Have a good cry. Ok…now move the fuck on and do something about it. Take your meds, see your doctors, advocate the hell out of it, and smile because you’re doing the best you can everyday.
Show people that these diseases cannot and will not break us. Its marketing. Its how you present your product. I would rather be the strong product with loads of facts and information that people pick up because it looks good, and get pulled in by reading the label. Those of you who just bitch about what your life is like can stay on the bottom rack of the dented can section. Let me know how that goes for you.
As a sick person…you seek out a doctor. It’s your hope that your doctor will have the answers and in return for their years of schooling, and your copay, they will tell you what is wrong with you and how to fix it.
Most of us are not doctors. Though at times we often feel like we know much more than they do, but the reality is we are not medically trained.
So…how do you tell a doctor they are wrong?
My adorable niece, D, is two and a half and for the last couple weeks has been exhibiting some strange stomach discomfort and weird poops. Naturally, for my family this throws up red flags all over the place. My sister, her mother, has been picking my brain about what to feed her and the details of her poop, what it looks like the consistency, the color, etc. Strangely enough, I am happy to be the poop expert for my friends and my family. Especially little D.
My sister has taken D to the doctor, and submitted a stool sample but has been told it would be 5-10 days before they had an answer. Poor D has been on the BRAT diet for over a week, and for a kid who lives on milk and yogurt, it hasn’t been easy for her. Judging by her symptoms, I do not think that D has IBD.
When my sister asked the doctor at the family practice (who just so happens to be my lady doctor), about the likelihood of D having some form of IBD, the doctor which we both know and trust replied that she doesn’t have IBD because kids of her age do not present these diseases.
Well…being an informed patient, I just so happen to know that this is wildly wrong. So wrong. So so wrong. Is it less common? Yes. But impossible? Not at all. Tell that to my kids at camp who have had IBD longer than I have by the time they’re in the 4th grade. Tell that to the parents of Elijah…who not only had UC as a small child but had it so severely he’s had a colectomy.
I just so happen to have an appointment with this doctor later today and I feel like its my job as an activist and a patient to correct her. However…I’m not a doctor. Is there a tactful way to tell your educated, trusted doctor they are wrong. So wrong in fact, that they could potentially be doing damage to their patients by neglecting the potential severity of their problems?