So as an IBDer we deal with a lot of shit, literally. But there is no feeling worse than dealing with shit that comes from somewhere it’s NOT SUPPOSED TO, which is what a fistula is. A fistula is an abnormal opening that connects two organs, causing drainage and air and pus and god knows what else to come through whenever it wants. I have a recto-vaginal fistula. So you can only imagine how THAT feels. Having a fistula is not only gross when it’s at it’s worse, but can also be painful, depressing confidence crushing. I know that for myself, personally, it leaves me feeling almost less-than-human. I’ve had 3 fistulas since my diagnosis of ulcerative colitis (which is now Crohn’s) in 2004 and I’ve tried every procedure and medicine out there for the damn things. I’ve had seton drains, vaginal mesh, Graciloplasty surgery, fistula plugs, the advancement flap repair, have been on Imuran, Remicade and am now on Humira to try and keep these damn things at bay.
Granted, since I started Humira my fistula has remained calm and even closed a majority of the way. But, after having a plug surgery last week to get the thing to ‘fully’ close I am having more drainage than I had BEFORE the surgery and am back to feeling pretty low. With this disease we go through highs and lows, what ifs and ‘should we?’ and constantly question our next move. I have a hard time planning ahead because I don’t know if I’ll still be able to do said activity once the day actually comes, and with a constant draining fistula, it makes these decisions even harder. The fistula affects any regular activity: standing, walking, sitting…etc. If I do any of these things too long I can expect to suffer the draining, burning consequences. Not to mention sex. Sex is a whole other subject. I’ve kept my fistula issues a secret throughout most of my relationships but as I’ve gotten older I’ve juggled with how to let my significant other know what is going on, with as little detail as possible. Regardless of my constant struggle with fistulas I have managed to: graduate from college, hold a full time and extremely demanding job at an ad agency, run in a 5k, travel to various cities and states, and workout. Basically what I’m saying is there are times when dealing with fistulas is rough, sad, frustrating, gross and painful. But I’ve realized that life continues to go on and it’s all about learning how to deal with it one day at a time. Ok, brb, got some shit to tend to.
I met my boyfriend shortly before his first surgery. His illness was pretty epic. He had been sick for maybe ten years with UC when we met. He moved to the UK to change careers and started training as a teacher at the school where I worked. It was not an easy school to work at, even for someone experienced. I’d hate to think how hard it must’ve been on immunosuppressants and steroids and in constant pain. But he managed to do it all and still remain cheerful. The staff and the students all loved him. No one knew how sick he was. Not even his best friend I think. I suppose he had learned to keep it from a lot of people by then, but he was really unwell.
A few months later he was hospitalized with shingles, as the drugs had weakened his immune system. We were friends by then and he tells me now that he’d already fallen for me, but decided he was in no state to contemplate women or relationships due to his health. I knew he had colitis, but I knew bugger all about the disease apart from that it affected the bowel. A few months later he had his bowel removed as a matter of urgency and had complications from his surgery. We kept in touch through our mutual friends and he returned to work after the summer.
We became great friends when he returned to work. Weirdly, his illness was partially responsible for us getting together. UC had nearly killed him, but it made him so grateful and positive about being alive after his first operation, he was so awesome to be around. His love of life was contagious and I loved hanging out with him. I’d never known someone with such a unique perspective. He used to tell me how great it felt to feel the wind and rain on his face after months stuck in hospital. Anyone who could be positive about the English weather had to be something special.
I knew he had an ostomy, but it didn’t bother me. He was so much healthier because of it and I was just so grateful he was around, bag or no. I let him tell me about his illness and surgeries when he was ready. We took a while to get together. The only reason I hesitated was because we had become so close as friends and we had a close knit group of common friends, that we both sensed it had to be all or nothing if we got together.
Since then we’ve not let it hold us back: I nicknamed his ostomy Oswald and we saw the funny side when he made noises, we saw the bright side to Oswald when we went to psy trance festivals in the middle of nowhere and managed to convince the medical team to let us use the medical tent loos (even though we spoke zero Hungarian), we realised his limitations when moved in together a matter of weeks after his second operation (and subsequent infections). Tip: Do not allow your significant other to try to move house post op, coming off tramadol and morphine.
The most difficult part of being with him was seeing him get down about having Oswald. I was so into this guy, I couldn’t have cared less if he had an ostomy or not. It didn’t scare me off but it really upset me that it made him uncomfortable, self-conscious or less confident at times. He avoided being completely naked around me at first which I understood, but his bag never put me off. It had saved his life. I fucking loved that thing.
There was one time, not long after we got together, when we were staying at our mates’ house. We’d had a lazy morning and were in the early stages of our relationship where you shag each other’s brains out. Then… the worst thing that could’ve happened happened. A leak. A significant leak. In bed. Pretty much right after a really lovely moment. Looking back now, we both think it’s pretty fucking funny. Not only did it occur at THE MOST (well, almost the most) inopportune time, but also: we weren’t at home and our best mates knew what had just gone on. But, despite it being embarrassing at the time, it wasn’t as bad as it could’ve been. It kind of got the worst out of the way pretty swiftly and we were able to get on with our lives. So what if it happened again? I don’t think it did happen again after that actually, but it took the fear out of that situation.
Two and a half years on, Oswald is gone and my boyfriend has a fully functioning j pouch. I have always said to him that if something goes wrong down the line, I’d welcome Oswald back with open arms. That bag made our relationship rock solid from the start. We had to be open and honest with each other from the get go. I became my boyfriend’s emergency contact/next of kin for his surgeries fairly early in our relationship. It brought us together in lots of ways.
We will get married in a week’s time.
And here’s a note from her boyfriend:
This is a letter my girlfriend (now fiance) wrote to my ostomy (and associates) after I had a serious shit party in my car, (leak, I think it was in the car on my way to work) and was just a bit pissed off.
We named my ostomy ‘Oswald’ and in truth we thought of ‘him’ as a third person (I’m sure you would get that).
Our relationship with Oswald was a love/hate kind of thing. We loved him for helping me be alive (just a small thing really!) but we hated him for being an arsehole. To be honest, we loved him more than we hated him.
We got together after I had my ostomy. We had been good friends before, we got together. I was all sorts of nervous but we worked out. I know Patches has written you an email describing how it all went so I won’t double up here. I just want to say that I really think it’s definitely possible to to start a relationship, even with an ostomy (shock horror!). All you need is someone who understands and is loving. Bec has been the most amazing person. I will be forever indebted to her for the way she looked after me and treated me (even when I did shit the bed). Her sense of humour was infectious and only served to made me laugh. Constantly!
Yep there will be arseholes. There will always be arseholes out there, with or without an ostomy. I read somewhere before that an ostomy is like an arsehole filter. Keeps them arseholes away. So, I figure, if somebody is all weird and shit then they are just not for you (sometimes, they mightn’t be arseholes, just not educated or open minded enough).
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….
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.
I would like to say hello to the loyal readers of Jackie’s blog. Jackie asked me to do a little guest blogging in order to relate to her male readers because, as she puts it, she “doesn’t have a wang”. She was looking for a little insight from me about male J-Pouch issues. As a proud J-Poucher for over a year, and a proud male for much longer than that, I think I’m up to the task.
My struggles have probably been similar to those of the female J-Pouchers, but I believe that many male J-pouchers (myself included) have a more difficult time dealing with the emotional pain that results from years of going through IBD, surgeries, and adjusting to life with a J-Pouch, in a healthy way. Not only do we try to suppress our feelings, but our male friends often do not provide the best emotional support.
Dudes in general do not seem to be as good as women at being compassionate. Shortly after I got out of the hospital after my first surgery, a few guys who knew the details of my procedure started referring to me as “shit bag”. When I was rather sick with colitis, every time I would run to the toilet, my roommate would yell, “Shit! Shit! Shit!”. This chant got a little old considering I was running to the bathroom every 10 minutes and was in intense pain. I’m not overly sensitive, and as a professional comedian I can take teasing almost as well as I can dish it, but I probably could have used a little more empathy from these guys. Thankfully, I have some good friends who have been extremely supportive and understanding throughout all my health battles.
Even though society has taken steps to combat gender stereotypes, men still tend to be conditioned to believe that any display of vulnerability, anxiety, or sadness signifies that they are less manly. Guys go to great lengths to avoid being called a “pussy”. Because of this, I think many male J-Pouchers/IBD sufferers do not seek the emotional support they need due to a fear of showing emotional weakness.
To the men, fellas, my bros, don’t disregard the emotional impact all this health stuff can have on you. As I have recovered physically, I’ve been trying to focus solely on advancing my career, especially because my health issues have had such a negative impact on my professional life. However, I have learned that if I do not take the time to vent my frustrations with my recovery or to acknowledge the emotional pain that years of suffering caused, then I will end up being as unhealthy emotionally as I used to be physically. So, I make sure to take care of myself emotionally because I’ve been through too much to neglect any aspect of my health.
Good luck to all of the dude J-Pouchers out there as you progress in your recoveries. I’d like to extend a virtual bro-hug to all of you.
Justin Berkman is a professional comedian living in Los Angeles. Luckily for him, he got an ass disease, and an endless slew of jokes! http://www.justinberkman.com/
You can see Justin talkin’ about colitis and ostomies in this video!
So my mother is a rockstar tax lady. I can successfully say that I know NOTHING about taxes because I just hand her a shoebox of receipts and magically a huge check appears in my bank account. This year I asked her more about writing off your medical expenses for your taxes. I’ve seen others chatting about it, so I wanted to pass along some info from my mother to you.