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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.


More Adventures in Dating – Guest Post

RedGlassHeartIMI’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….

The CCFA Ad Campaign: Ain't No Party Like A Butt Hurt Party

Adco-popupAs 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.

My Ostomy Journey

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.

Pre-op surgery # 1. March 2010

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.

My belly post-op. I was embarrassed to really show my ostomy, so I hid it and didn’t really take pictures.
The one and only photo of my first stoma.

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.

I wore my “Lucky Lass” shirt to my pre op appointments. I knew I needed some extra luck.

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.

My third stoma. My prednisone scarred stomach. Horrible JP drain.

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.

My last picture with my ostomy.
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.

Former ostomy site.
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.

Correcting your doctor

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.

However.

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.

Wait.

What?

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?

Suggestions?

 

 

 

Insert innuendo about being dirty here

This past weekend, Charis came to visit so we could work on some Girls With Guts stuff, and more importantly so we could have a little bit of fun. It seemed like we’ve been working our asses off lately, so it was nice to just hang out and have a few laughs. We did more planning for upcoming big changes, but we also met with our location for our event next year! More info to come! I really think everyone is totally going to love it!

What I really want to write about is the mud run we did. It was the Down and Dirty Mud Run and the breakdown is a 5K with obstacles along the way. This is the race that I started running for. Initially I thought that I would just run this race over the summer and train for months to get ready for it….the reality is that I did a “test” run in June as my first official 5K….and the rest as you all know is history. I started running, learned to love it, and the mud run just ended up being an added bonus!

The race started with a huge hill a few hundred yards in front of us, and if you’re a runner like me, seeing a hill like that is annoying and frustrating. I equate a hill like that to pure dread that does nothing but make me huff and puff. So we get up the first hill and I’m all “YAY the hill was conquered!”. Haha, joke was on me. The whole first mile or so of this race was mountains. I have lived in Michigan my whole life, and my geography teachers should be shot in the face because they never taught us about the mountains that are hidden within our Metro Parks. Those shit heads. The good news is that it wasn’t just me, Charis had a hard time with the hills too, and so did everyone other freakin person in the race. I’ve never seen so much walking at a race. I am an expert at this point…as this was my 4th race, so clearly I know everything at this point.

Anyway…the obstacles were pretty awesome. There was a lot of climbing, and crawling and such. There was a big walk through the lake and of course the mud. Mud is an interesting substance. It has the ability to seep through skin tight clothes and clump under the material. When I eventually changed my clothes…I was astounded as just how much mud had made it into…other parts of my body. Like my ears. Just my ears people.

I was surprised at how easy I found the obstacles, considering they were where most of my fear was directed. I was afraid I’d be too tired to complete them well…or even at all. But I gotta tell you Internet, I felt like a damn rockstar. It was like the obstacles weren’t even there. Up and over cargo nets, climbing walls, slippery walls, whatever. I did it, and I did it well.

Also, shockingly, I didn’t sound like a cow in heat while doing it either. Due to the nature of the race, I could bring along my precious headphones. I was horrified at the prospect of listening to myself gasp for breath for 3 miles. But yet again, I surprised myself. Once I got my breathing steady, not only did I not really pay attention to it, but I didn’t have to think to keep it steady. This shit is starting to come naturally, ya’ll.

I do want to clarify one thing about all of my recent posting about running. I remember very clearly a time in my life when all of this was not possible. Not even fathomable. I hope you all don’t feel like I’m posting these stories and photos because I’m bragging or flaunting how great I feel. My intention is to tell you all if you’re in the hospital or feeling awful…I’ve been there too. Remember me? 6 surgeries, 3 ostomies, complications, the Multiple Sclerosis patient? Its not like I’m the epitome of health over here. But I really WANTED to be able to do this…so I trained. When I feel good…I train. When I feel like shit..I don’t. Simple as that. I want you all to know that you CAN do this. Its not a matter of your IBD being better/worse than mine. Its not a factor of how out of shape you are or how weak you feel. What it all comes down to is the effort you put into it.

Right now, I’m still pretty amazed at how far my body has come. I’m even more shocked at how important I find “fitness” to be now. I have always been told how much exercise helps patients with MS and the key to maintaining my mobility in the future is moving. That was never enough motivation for me. Doing it…and the feeling I get after doing it is enough for me now. Working out and training to run is hard. Its not always fun, but after doing a race, or accomplishing something in the gym, I feel pretty awesome. Just remember if you’re in a bad place with your health right now, it doesn’t mean you’ll always be there. Set goals and do what you can to achieve them. I’m telling you, it works.

Ostomies and Bikinis

I got this email the other day from Julia.

“I have UC for 4 years. I have tried all the medications you can think of. I had the surgery for an ileostomy feb. 2010. I had the 3 step surgery and got reconnected in nov 2010. Jan 2011 I started to get fistulas on my butt. The surgeons tried C-tons and countless other procedures. I got reverted to have the ileostomy again in march 2011. The doctors thought the fistulas would clear but they didn’t. Going in and out of he hospital i had enough. So just 2 weeks ago i got my pouch removed and now have a permanent ostomy. All this and I just turned 16 in Jan. I thought Id tell my story because this is really the only blog i could find about UC. I do have a question. I really want to wear a bikini in the summer. Any ways to hide the bag and still do that?”

Before I answered her, I made sure to write her and tell her how awesome I think she is for being a wee babe of only 16, choosing to have a permanent ostomy and being ready to rock it out in a bikini.

So there are a few suggestions that I have. I did this post a few months back about a woman that I found on Etsy who did custom bathing suits that were high waisted and kinda of a retro styling. I LOVED this bathing suit, and her site enabled you to mix and match tops and fabrics and its all custom to fit you. Her prices were TOTALLY reasonable too. If you want to wear a bikini, a high waist is a really solid option, and luckily these retro styled suits are pretty “in” right now. High waist bathing suits are no longer reserved for moms.

There is also the tankini option, but thats not the same if you’re looking for a bikini.

The other option I like requires more confidence…but its still a great option. Maggie from Let’s Talk IBD, did a video about how she wears stoma caps, covers them in fun duct tape and just rocks it out. If I still had a stoma this would be the way I would choose. Yes, people can see that there is something in your stomach, but it doesn’t look like an ostomy bag, and its kind of fun. This method does require a 2 piece appliance. I have linked to this video by Maggie in the above post, and there is also a video from Dennis at the UCVlog.com about what he did for swimming. I also put in this post some of my other tips about swimming with an ostomy in there too.

You can find swim wear specifically for ostomies at Vanilla Blush a company from the UK. I have not used their stuff because I was NOT in bikini shape when I had my ostomy.

One other option is this swim wrap from Ostomy Secrets. You could use this with any suit you already have.

I hope that people with ostomies aren’t afraid of swimming. I really hope that you all see that not only can you still swim, but its not that big of a deal. I hope you ladies wear your bikinis with your bag out. I hope you guys are proud of your ostomies, and don’t let it hold you back from something as basic as swimming. Its your life. Live it!

 

 

 

 

WEGO Prompt: You think you know, but you have no idea.

This goes out to all of you lurking on this site and others like it, who have not had surgery yet. Those who swear they will NEVER have surgery. Those who would rather live in agony than live with a bag for a few months or forever.

So you think you know what it’s like to live with an ostomy as I’m sure you’ve seen it on Grey’s Anatomy once or something and you think that there is no greater death sentence in life than living with a shit bag attached to your side. No way. Gross. You’d rather die. Your IBD isn’t bad enough for an ostomy anyway.

Sound about right?

Listen to me when I say you really truly have no idea. I’m not going to tell you how it will change your life for the better, and you’ll be happier and healthier…because you won’t believe me. For whatever reason, non-ostomates think that those with ostomies are running this huge conspiracy to sucker everyone else into having surgery. Then when you get the ostomy, the ostomates will say “HAHA SUCKA. Now you’re one of us and you get to hate every day of your long long life”. You’ll spend the rest of your lives trying to convince people to get ostomies so they can be as miserable as you are. It’s a vicious cycle.

Sounds ridiculous, doesn’t it? Think for just a hot second that perhaps all of those people with ostomies out there who tell you they are thankful for it, might actually be telling the truth. When they say they got their freedom back and the ability to live their lives again….that it isn’t some ludicrous story they tell everyone.

I swear to you that no one who has an ostomy really wanted it. No one slammed through the door of colorectal surgeons office, demanded to see the surgeon, and then said with tears in their eyes, “There is nothing that I want more in life than an ostomy. Please make my life’s dream come true and cut out my organs and reroute my intestines to my stomach. This is my hearts desire. Grant me this one wish and I will forever live in a state of pure happiness”.

What I’m trying to say is that no one wanted the damn thing, but yet here they all are telling you it will be the best decision you ever made. These people have been to hell and back, they wouldn’t lie to you. I wouldn’t lie to you.

Think of an ostomy like a puppy. (Here she goes with analogies again). You love your puppy and a lot of the time it brings some joy to your life, and you’re happy to have the little guy. But what you didn’t realize when you got it, is how much it shits. It shits all over your house, and frankly you’re tired of cleaning up its shit. You get super frustrated with your puppy because it doesn’t know any better, but its not doing what you want it to do. Sometimes you just have to laugh at how ridiculous the whole situation it. You laugh at yourself and your puppy because even though you love it it can drive you nuts, but at the end of the day you’re happy you have your puppy and that it helps to make you happy.

Current music: Holding out for a hero – Bonnie Tyler (80’s are awesome playlist)

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