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More Adventures in Dating – Guest Post

The Love Birds
The Love Birds

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.

A letter written to her partners ostomy
A letter written to her partners ostomy, click to see larger

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).

More Adventures in Dating – Guest Post

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.


holding_handsA 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.


A lame update post

Hey guys. What’s up? Not much here.

That’s a lie.

I am one busy mofo. Hopefully you can tell that by the fact that I have not updated in over a month. …….bad blogger.

So heres the updates!

I am working hard at my new job, which I love. I feel fortunate to have it everyday and even more fortunate that my whole medical history is not an issue.

I am working my ass of for Girls With Guts right now. We are in full steam for planning our 2013 Fall Retreat. Holy crap you guys, I am so nervous but at the same time SO SO SO excited. If you’re a lady with IBD/ostomy/jpouch, I really urge you to check it out. I think we have an amazing weekend planned and frankly, it would mean a whole hell of a lot to me if some of you came. So many of you have been so important in my IBD path, and it would be nice to be able to thank you in person. If you are having a problem affording it, we’ve got scholarships! Deadline is the end of July so act fast! Also I swear that wasn’t a commercial, but its just a HUGE part of my life and I really want people to come because I think it would be really helpful and be a great resource.

I am speaking at conferences! I’ve been invited to speak at two conferences this year (I’ve declined one) but I was also asked to come speak and mentor at the Michigan Girls Scouts of America leadership camp. In the giddy 12 year old me, I am really really excited about this. I was a Girl Scout as a kid, and I remember having mostly fond memories (until I got kicked out, but that’s another story), and I remember it being a really positive part of my life. There is something inherently exciting about speaking to a group of young girls who are motivated and excited.

I DONT WANNNNNA. WHHHHAAAAA
I DONT WANNNNNA. WHHHHAAAAA

I’m back to my neurologist to start a new drug for my Multiple Sclerosis. This is sort of a touchy subject for me because I feel happy and healthy and I don’t want to be on any medication. None. I take NOTHING now and its so fantastic. But by not taking anything for MS, it’s not necessarily helping me, more or less just letting me throw my oblivious ignorant fit about being med free. So now I’m stuck between this adult rock and hard place where I want to just enjoy being healthy for the first time and a long time, and throwing a tantrum about taking meds because I DONT WANNNNNNAAAA. Getting back into medical mode is a little difficult. Doing testing again is obnoxious. But alas I am an adult and not an unruly 4 yr old. My new med won’t be a flavorful Flintstone vitamin but hell, there are medical breakthroughs everyday. You never know. Remicade could become a maple syrup you slap on pancakes once a month. Humira could just be the active ingredient in a new energy shot. A girl can dream.

Here I am looking particularly miserable as I get electrocuted.
Here I am looking particularly miserable as I get electrocuted.

I ran the Tough Mudder. It was 12 miles and 20-some military obstacles. While I’d like to be all, “CRUSHED IT”, the reality is that I did it, I finished, but I’m sure it was not pretty. It was 12 long miles of mud, mud, electrocution, mud, walls, the coldest water I’ve ever been in, mud, mud, and the norovirus. Apparently in the Michigan course we also had the added benefit of a gastrointestinal bug. Lucky day! But get this. I think I’ve put enough Good Gut Karma into the world that I didn’t get it. Dude, I know. Days after the race normal, healthy, coloned people were dropping line flies due to IBD like symptoms. I, however was not fazed. I wonder if I gave all of Tough Mudder IBD. Suckaz. The summary is that I didn’t train enough (per usual) and it was hard but not impossible. Honestly, my body and its abilities keeps amazing me. It may not be the hottest bod, or the strongest, but its been through a lot and now I have a fancy orange Tough Mudder head band.

But that’s pretty much it. I hope guys are well. I have some more stuff in the cue for postings soon so check back and I swear to not disappear again.

 

 

My adventures in dating

So I’m dating. Well, I started dating. Let me rewind.

Dating is a HUGE topic in our community because there is a lot of fear around disclosure and acceptance. In the past I’ve written about dating and my opinions, but I have never actually dated since I was diagnosed with IBD. So all of my theories and advice were pure speculation, even though I still consider it solid advice.

So now I have legit experience in the dating-sphere, and I’d like to share it with you guys. I approached dating cautiously, after all the world is full of crazies. I haven’t actually dated…ever. I was in two very serious relationships for the last 13 years so not only is dating with IBD/jpouch scary, dating in general scared the literal shit out of me. I realize that I tend to talk about my butt to anyone and everyone who will listen, but I also realize that is not great first date conversation. Or at least that’s what I’ve read in forums and other blogs. Hell, I think that’s the advice that I gave in the past.

Here is what I realized…I can’t not talk about my butt. First dates, and even the predating period, it took me a matter of days, if not hours to spill the details on my defunct digestive system. I literally can not stop talking about my butt, and my blog and Girls With Guts. If this was the test, I failed with flying colors. Even if I wanted to hide my history,  if just for a few dates, I can’t. My name and face is plastered all of the internet with “butt disease” slapped right next to it. I have positioned myself in a place where my future beau can read details about how I poop, see my fat face pictures, and view graphic photos of my body when it was at its worst. This is my life, there is no hiding it, there is no going back. I get that is scary for potential suitors, but whelp, this is me.

But you know what…not one of the guys I was talking with cared. In fact, many of them talked with me about their own health ailments and it made me realize a few things about the world. First, that many of us are all giant health disasters, and also that people like and fall in love with the person, not their medical records. I’m sure there are people out there who might run screaming from me on a first date, but frankly, I never found that guy. Not once.

In fact, I found the opposite. I have found someone who cares about me because of what I’ve done with the hand I was dealt. Someone who understands and can relate. Someone who I think is really great, and who thinks that the sun shines out of my ass. Actually, I’m going to ask him to guest post so he can tell you himself what he thought when he met me, learned about my butt disease, and MS and why he didn’t run screaming.

So don’t let IBD scare you away from dating. There a million reasons why someone can like you, or not like you, and frankly IBD is probably not one of them.

My Disappearing Act

As you may (or may not) have noticed, I have been a little…absent shall we say from most things internety. Aside from some mildly ambiguous tweets, I have sorta fallen off the grid…for a whole week. Which in blogger time, is like a fucking eternity. The super good news is that my ass is still functioning all fine. So is my heart, and eye balls, and well everything on my bod is still in good working order. But I guess I did sorta just lie, my heart is hurting. Not my real heart that pumps blood all over and is squishy and red and important to keep me alive, but rather my figurative heart that is directly connected to my vagina because I’m a women. Speaking of which, why are lady hearts so obnoxious? The figurative ones I mean, not the real ones. The real ones are good and useful. Can you tell I’m trying not to piss of my real heart?

Anyway, Internet. Last week I broke up my boyfriend. I know for most of you this is anticlimactic, but for me its a big deal and my lady heart/vagina is really sad about it. Also, if you’re a member of said boyfriend’s family, I’m sorry you have to read about this on my blog along with the rest of the internet. At least its not Christmas and you’re trying to figure out why I blew off your family party (which we both know I wouldn’t do)…because I’m sure he’s not going to go out of his way to tell you.

So I’ve been trying to navigate these post break up waters, because I have no fucking idea what I’m doing. I have literally been in one relationship or another since I was about 14 (and by one or another I literally mean two). The last breakup I had was so dramatic that it could have beat out Mad Men for drama of the year and it was awful and painful and I was like 22 so I’m sure I cried an extra 25 tears for every second we were together because thats what young people do. Also, about a minute later I was dating my current (and now ex) boyfriend. I didn’t really do this on purpose, but it happened and it was a really pleasant thing at the time. Fast forward now, 4 and a half years later and our relationship was anything but pleasant and a break up has been long overdue, just ask me. Don’t ask him, he doesn’t agree.

Since this blog isn’t titled “Blood, Poop, Tears and Jackie’s Love Life”, I don’t spend a lot of time on here talking about said love life. I also got to the point where even I didn’t want to hear about the mind fuck that was my relationship, so I stopped talking about it to anyone and everyone. Don’t take it personal internet. It has also taken me a a long time to realize how vital a relationship with someone you love can be during your sickness. I SHOULD have been writing about him. I SHOULD have been able to talk about how supportive and helpful he was. But I couldn’t, because he wasn’t, so I didn’t.

Call me weak, call me stupid, call me whatever you want, but this is what I’m trying to figure out with my brand spankin’ new therapist. Because when anything gets hard in my life I go running to therapy, and don’t you judge me because the world would be a much better fucking place if we all sat around and talked about our feelings with strangers. I mean….yea I guess that I do that on this blog, its different because when I explain ridiculous things that happened in my relationship I can actually SEE my therapist roll his eyes.

So I may or may not be talking about this more, I can’t decide. I don’t want this blog to become a “Dear Diary” for my broken heart. Mostly because thats not the point, and also those kind of diaries are really only useful when they belong to your sister and she hides them under her pillow and it has one of those shitty “locks” on it. I say “locks” because I’m pretty sure you could just breathe on it and it opened. Maybe it was a magic lock, that didn’t take a key, but just some air. Thats some Harry Potter shit right there. Also, I’m sorry sister of mine, but I read the shit out of your diary when I was little. I’m sure this is no real surprise to you.

Well friends that about it. I’m really sad but I know this was what is best for me. And that is really shitty. So feel free to send me chocolates, or french fries. This is definitely a “get fat” breakup and not a “get skinny” one. Which is a serious deterrent to my ability to find a new mate. I have also been living on grilled cheese for about 3 days. I ran out of bread AND cheese yesterday and I almost had a melt down. Or not a melt down, I mean, I didn’t have any cheese to melt. My pant size is growing, and my blankets might be covered in snot, but I think my writing is better. So we all win. Mostly. Not really.

The Uncaring Partner

I am in a fabulous mood right now, so I figured because I am happy and peppy now would be a good time to write about what its like to go through UC and surgery with an “uncaring partner”. This topic is generally pretty depressing for me, so this is why I’ve chosen now to discuss it.

I tend to share everything with you Internet, and I do mean everything. The one thing that I don’t really talk about is that I am dating a robot. Think less C-3PO (he has a personality and talks) and more R2D2. He functions as a human but is missing human characteristics like emotions, sympathy, regret…etc. The robot’s number one mission is to keep itself running.

Boyfriend and I have been together 4 and a half years and 3 of those years I was sick. When I tell most people that, I get a lot of “oh he must really love you”, or essentially telling me how amazing he is for not leaving me during that time. I will say that from the outside, it may seem as though that is the case, however, that isn’t really what happened. To put it all really bluntly Boyfriend didn’t care when I was sick, having surgeries, dying from the inside out, or when I was suicidal. And not in the its-so-sweet-it-doesn’t-bother-him not care kind of way, but more in the “I literally just don’t give a fuck” kind of way.

In the beginning when IBD was new and we still didn’t know what was really wrong, he cared more. I remember him sleeping on the floor of my tiny ICU room in a hospital that was almost 2 hours away from his job. I remember not thinking anything of it, because I thought “this is how it’s supposed to be”. Once my condition was more clear, and later as it got worse Boyfriend also began to care less. Some people said, “He just doesn’t know how to handle you being sick.” If you knew Boyfriend, I think you’d know that wasn’t the case.

Boyfriend isn’t what you’d call supportive. In fact, he had no interest in my doctor’s appointments, my surgeries, my setbacks or my progress. Boyfriend doesn’t care about this blog and has never read it. Boyfriend doesn’t understand why I volunteer a week of my life for Camp Oasis. More than likely he can’t tell you that what I had is called Ulcerative Colitis, and that I have Multiple Sclerosis. These are just not things that matter in Boyfriend’s life.

Now that you’ve gotten a glimpse into my very private relationship, you may understand slightly what its been like dating Boyfriend, the robot, while I was very sick. I looked to my family, who in turn were amazing and gave more support than I probably deserved. I learned not to expect support from Boyfriend and just go to the places where I KNEW I could get it…..family, other friends, and you guys here at my blog.

Since I’m laying this all out here, I know that you’re all going to judge me. I know some of you may be thinking “you deserve better”, “he’s an asshole”, or my favorite “you are a dumbass”. Chances are if you were me, I would be thinking the same thing about you too. I am, in fact, not dumb. I know how it looks, I know how it feels, and I’m not blissfully ignoring how things are/were and pretending like it’s all ok.

There may be some of you out there who have people in your life who are like this. Maybe its your spouse or parents. But here is where I tell you how to deal with it.

You make a choice. You choose to deal with it, or you don’t. Easier said than done…trust me…I know.

But if you choose to deal with it you’ll need to develop a source of support somewhere else. Hopefully you have other family members who will stand by you, or friends who care deeply for you. You find other people who understand, like on blog or facebook sites. Most importantly you learn to be self-sufficient. If you don’t need that person, then it won’t hurt as much when they choose not to help you. Is this a depressing way to look at it? Sure. Is it wrong? No. No one can tell you what your relationship is supposed to be like, or look like, or act like. You know the reasons why you stay (and if you don’t, you better figure them out). I will say that I would have liked for Boyfriend to have been more caring and supportive through all of this but because he wasn’t I learned to be much more self-sufficient. I am baffled when I read that other people have their spouses change their ostomy appliances or give them their shots. ARE YOU KIDDING ME? I depend on no one. I think that there are a lot of people out there who could learn a little independence.

Am I jaded by Boyfriend and our relationship? Yes. Aren’t we all jaded by someone at one point or another? At the end of the day here is what you need to know about Boyfriend and myself. He has irrefutably let me down in the hardest time of my life. Due to that I have learned to depend on myself almost to a fault. I also don’t know if I can ever “forgive” for that, but frankly he’s never shown any interest in my forgiveness. Boyfriend still makes me laugh, and I still have a good time when I am with him. We have shockingly similar interests aside from health issues. If anything he has been a constant in my life during the ups and downs. You guys know how I feel about marriage and babies and Boyfriend feels the same way. So for right now…Boyfriend works. He provides me with what I need from him right now. What may be hard to understand for many is that what I need from Boyfriend is not what most people need from their significant other. I do not depend on him for my emotional or physical health and well-being. I don’t depend on him financially. I don’t depend on him. Period.

Current Music: The Postal Service…all of it. On repeat.
(I’ve decided to list my music when I post because I just want to. And I do what I want.)

 

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