IBD Accessibility

I waited to write this post because I was hoping something better would come from it. But it turns out MLSE is going to use this as a “coaching opportunity” so I’m going to use this as a “awareness opportunity.”

I purchased Eric Church tickets months ago, before my third and final surgery had been scheduled. Realizing that it was only weeks after I figured I should probably sell them. The event was at the ACC and I wasn’t sure I’d be able to stomach a night downtown. But I REALLY wanted to go. And my recovery had been going so well, I figured I’d call MLSE and see what kind of accommodations they could give me.

They had an option on their website for “accessible seating,” so I filled out a request form, asking if I could trade 2 of the 4 tickets I purchased for an accessible area. I realize that my need for “accessibility” was likely not a common request so I also phoned someone to clarify. I spoke to someone in Fan Services, who was fantastic. I explained to her that although I my needs were not related to mobility, I was hoping I could exchange my tickets for seats somewhere with close, immediate access to a washroom. I didn’t want to have to walk far to a female washroom, and I definitely didn’t want to have to wait in a long line. She suggested a section that was close to a female washroom AND a family/accessible washroom in case the first had a long line. Great. She took down my information so on the night of the event they knew I’d be coming, and it could be an easy switch. She was awesome and made me feel so much better about going.

Once I got there, it was a different story. I was told that although they were expecting me, the section the first girl had told me to request was sold out, and I was probably better to just sit in my purchased seats, unless I wanted seats “rear view” to the stage, or in the 600s. I explained to them that had I known this particular section was sold out, I wouldn’t have come to the event. I began to panic and left to go to my regular seats. But confused and upset I thought, “No, I’m not accepting this answer,” so I went back to Fan Services.

I spoke to a manager there and asked her to clarify what happened between the conversation I had on the phone 4 days ago, and now. Basically (as I learned later the next day when I phoned to speak to someone else) there is a disconnect between Fan Services at the ACC and Ticketmaster. The accessible seating is available for purchase for anyone needing it (typically those in a wheelchair or who are unable to walk up stairs). If those seats are not sold the day before the event, Ticketmaster sells them to the general public. Even though I had called and requested to exchange my seats 4 days in advance, Fan Services cannot guarantee they will not be sold, and does not reserve them. Also, this conversation was the exact opposite of my phone conversation. They made me feel stupid, belittled me and often referred to me as “able bodied.” They referenced people in wheel chairs and it was clear that mobility accessibility was a priority, and not my unconventional needs. The service was unfriendly, unaccommodating and overall upsetting. If only they new how “ABLE” my body was….

Noticing my frustration, they had someone do a run around to find another solution. I ended up being placed in a different accessible seating area close to both a female washroom and a family washroom. They alluded to what a “favour” they were doing for me because this section was sold out but I’m luckily being squeezed in. Let me tell you what this “sold out” section looked like….

There was one guy with a cane, who indeed needed the accessible area. But then 4 (FOUR!) of his buddies. They purchased their tickets last minute, when they were being offered to the general public. As the night went on they became drunker and drunker, and invited friends who were also at the event into our section, people from the rows and seats around us, and before I knew it the accessible area had turned into a frat party. They were slipping in spilled beer, shirts were being taken off, numerous girls coming to party and I actually felt like I was intruding to their private box, which they constantly referred to this area as. The usher was either not there at the entrance or not checking tickets and whoever wanted to join us could……But thank you Fan Services for doing me this favour. As someone recovering from surgery I really wanted to be at a frat party.

That’s beside the point though. Obviously several times I needed to use the washroom throughout the night. Every time I went, the line up to the women’s washroom was out the door, and stretched down the hall way. I also made a point to go during a song, and not at busy times like before, or during intermission. In a panic I went to the close family washroom. Obviously since the female washroom’s line was so long, women had just started lining up there. Either way I had to wait and was sent into a bit of a panic. Luckily I was okay. Since my surgery I’ve gained better control over my urgency, but had this been during a flare up when I was sick…we’d be leaving after an accident. The whole thing ended up being pointless.

If you know me, I don’t let things like this slide though. I looked at MLSE website to view their policies and noted that under their Accessibility section it read:

“In accordance with the Accessibility for Ontarians with Disabilities Act (AODA), Air Canada Centre is committed to working to improve access and opportunities for people with disabilities by identifying, removing and preventing barriers that might interfere with their ability to make full use of our facility.”

Unfortunately for me, the ACC failed that night. Although I identified my barriers FOR them, the effort to remove or prevent these barriers (close proximity and a large line up) was minimal, and ineffective.

I phoned Fan Services the next day to offer my feedback and provide some insight. The woman I spoke to was lovely and she listened with intent and an open-mind. She was receptive and apologetic and I really am appreciative to her.

My main issue, aside from the attitude and poor customer service, including the lack of security at the frat house, was the integrity of the word “accessible.” For me, although perhaps unconventional, it does not refer to mobility at all. I need ACCESS (immediate, or at least quick) to a washroom. I explained to her that I although I was fortunate in not having an accident, that might not always be the case. 2 years ago, I would have shit myself. Legit. I also explained that I am aware they might not receive these kinds of requests often, but I cannot possibly be the only one who would benefit from some sort of accessible washroom, without a line. I cannot possibly be the only one at the event with Crohn’s, colitis or continence issues. I very well may consider not attending events if I am not well and cannot get to a washroom quickly, which is sad. I shouldn’t have to miss out on life because drunk cowgirls need to pee.

So here was my suggestion to them: Perhaps offer a washroom that only specific people have ACCESS to. Perhaps a security guard to unlock, a pass card, or a separate back way admission. Somewhere we can go, without having to wait 10-15 minutes for a stall. Although the ACC said those family washroom are “accessible,” they only meant in terms or wheel chair or walker access, and again, were not considering the idea that my disability was not physically visible. Open your minds.

She took my feedback and discussed with her team. She loved the suggestions for how to improve their accessibility and addressed this as perhaps a future possibility. When she followed up with me, I’ll admit I thought she may offer some sort of compensation, or in the very least a refund for my tickets to a concert that I didn’t particularly enjoy because I was rattled. But no. They are going to use this as a “coaching opportunity,” and that was that.

So here is my plea. Don’t stand by organizations that are behind the times. It is 2017 and MLSE should recognize the diversity in accessible needs. But people need to speak up, and advocate. They only time we’re going to see change is when we point out the necessity for it. I’m only one person but if more and more people start asking for unconventional requests, we may actually see progress. Don’t be afraid or intimidated to at least ask and then provide that feedback. I may be on the mend but I know so many people may benefit from an accessible washroom so let’s start asking for it. Until then…..wear a diaper I guess.

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J-Pouch Recovery

Who would of thought that at 27 years old I would be potty training again? It’s been almost 3 weeks since my surgery and although I would say it’s going probably better than I expected, potty training is hard. Kudos to my toddlers cause you guys are all-stars.

The first thing I needed to tackle was my sleep. Reminded of how sleeping was when I was sick, I was getting up between 8-10 times a night. One night between 12:00 and 7:00am (because your number can reset at midnight), I was up 9 times. And like I’ve mentioned before, how can you possibly prepare yourself to have a good, positive day, waking up with a number like 9? This immediately set the tone for the day. I was exhausted, my ass was burning, my incision was aching and I felt like I was spending my days, recovering from my nights.

Luckily I’ve had quite a few visitors who’ve brought me food, kept me company and encouraged me to leave the little bubble that is my house, and see the world. My days go by quickly when there are visitors and they’ve done an excellent job keeping me occupied. I haven’t quite gone stir crazy yet.

Eventually I started taking Imodium right before bed, to which I ended up only having to get up between 2-3 times. By morning I felt refreshed, and rested. For the first time I felt like my body had a break, and I was on a mend.

Careful not to become dependent on Imodium, I ensure that I don’t take it during the day. During the day is when I continue my “training.” I work on holding it and building up my tolerance to the urgency. And very gradually, I have noticed my frequency come down.

Only within the last few days have I noticed that my abdominal muscles don’t seem to hurt so much. Right under my incision is where my stomach would ache, especially during every bowel movement and when it felt like I was straining. But now I feel them healing and becoming stronger. There was one particular incident with a friend and my sister where we were laughing and laughing that I could feel the pain aching, but couldn’t stop myself. And the next time I went to the bathroom it somehow didn’t hurt so much. It must be true that laughter is the best medicine.

I get a lot of questions about my diet and the truth is that I haven’t quite mastered it yet. I was told to stick to low fiber foods for now, and if I have a lot of diarrhea eat those starchy foods like rice and potatoes (or marshmallows). I take a liquid vitamin in order to ensure I’m still getting those nutrients, and again only within the last few days have started to eat raw fruits and vegetables again. Given my known sensitivity to wheat, dairy and eggs I find I’m in a constant battle trying to balance what I can eat and what is really upsetting, with also what’s good for recovery, what’s good for a J-Pouch and what’s good for a normal healthy diet. It’s all still very confusing and I’m still working on it, so don’t look to me for expertise quite yet.

In the mean time I went back to the gym for the first time today. I started my HR course again last week. I’m drinking an excessive amount of water. I managed to go downtown twice over the past weekend (which is a story in itself in terms of accessibility, stay tuned) and even had a sleepover. I plan on continuing to rest, write, work and most importantly laugh

Closure

Here’s what I’ve been waiting for. The day has finally come. On February 14th, Processed with VSCO with a5 presetValentine’s Day. I kissed my ostomy GOODBYE. It’s been a lovely year and a half and I have learned A LOT but it is time. My closure.

Given my small tiny, uncooperative veins it was taking the team too many attempts to get a line in so they gave me some sort of gas to just kind of knock me out in order to allow them to poke me as many times as needed. I think it took 4 or 5.

Usually I wake up from surgery high AF thinking, “This is so fun!” and the only pain I feel is a slight burn from my incision. This was NOT the case this time though. When I had my pre-op appointment, as well as my meetings with the nurses we discussed my nausea and vomiting the previous two surgeries. They mentioned that it could be a sensitivity or a mild reaction from the pain meds and decided to put an arm band on me indicating an allergy to Dilaudid and Morphine. But the anesthesiologist mentioned that it’s just a normal side effect. I guess someone, somewhere along the way decided it would be a good idea not to use either……Until I woke up in absolute agony.

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I have never in my life felt a pain like this. I can now accurately describe what it feels like to be stabbed in the gut. Once they realized my pain was a 10 they spent the next 2 hours pumping Dilaudid into me to get it down to a tolerable 4. Then my mom was able to come in and I was finally able to leave recovery and go up to my (private!) room.

My nurse that evening did a fantastic job managing my pain and encouraged me to get up and walk myself to the washroom, which I’ve never been able to do the day of surgery so that was really positive for myself. I had a great sleep and was ready to continue walking the next day.

Despite my best efforts to walk as much as possible and chew my Hubba Bubba, my bowels did not seem to wake up. By day 3 I was very uncomfortable with a distended abdomen and a lot of bloating. This happened last time as well and the only thing I could do was keep walking and chewing. They considered putting in an NG tube to relieve some of the gas but I wanted to avoid that so I just did my best to keep moving. They also decided to stop my Dilaudid because sometimes that can slow down the process as well. So there went my pain medication.

Luckily by late in the afternoon of day 3 things started to move and I was given some relief. Since I hadn’t eaten in 4 days I was only passing bile. But then I was given some Cheerios for dinner and able to slowly introduce foods by the next day.

I was discharged on Friday morning and home for the weekend where I’ve spent it napping and resting on the couch. Luckily I’ve had amazing family who cater to me as well as visitors who bring nothing but treats and well wishes.

Things are moving again, which is weird but not as satisfying as you would think. I find myself straining when I go to the bathroom and it becomes quite painful. My bum is sore and I’ve needed diaper cream throughout the day which helps a little bit, as well as a warm bath with Epsom salts.

I was told to prepare myself to feel like I have really bad colitis again. But that really hasn’t been the case. I haven’t had any accidents, I can stay awake for the whole day, I can make it through a meal and the consistency is not nearly as liquid. When I had colitis it would have been unlikely I could have managed the car ride home from Mount Sinai to Newmarket. But I did. Mind you, it’s only been a week so let’s all just knock on wood.

What I do find familiar is nighttime though. I’m reminded of being woken up almost every hour and running to the washroom, sitting there half asleep. I’m reminded of when I would have to lie very still otherwise a slight movement would result in immediate urgency. I’m reminded of being in such a light sleep that I dream all night all sorts of scenarios, because my body isn’t able to rest long enough to achieve that deep sleep. I’m reminded of counting how many times I go during a day, and waiting for the clock to turn to midnight so my number could reset. And I’m reminded of waking up exhausted.

Luckily this was all expected and I have the next 3 months to adjust and recover. Without my pain meds I still am moving very slowly and my stomaProcessed with VSCO with a5 presetch is tender. My scar is healing nicely and it actually looks pretty bad ass if I do say so myself.

 

Maybe this isn’t closure. Maybe this is another door opening. I don’t know if I’ve fully comprehended that it’s over: That I don’t have an ostomy or that I don’t have any more upcoming surgeries. II may actually be “healthy” and not ridden with medical expenses and prescriptions and time off work. I haven’t let it sink in that my fresh start is just beginning and I have so many opportunities ahead. It’s so exciting yet overwhelming that I haven’t even processed it all yet. One step at a time I guess. And then it’s my time to shine.

Thanksgiving

Canadian Thanksgiving just passed and I didn’t post anything on any of my social media platforms, (which seems to be the norm for expressing your thanks.) The truth is after arriving home Friday night, I was in a really low spot. I should have been thrilled to be let out just in time for the holiday. But in reality I was feeling overwhelmed and defeated after what felt like an eternity spent at Mount Sinai. I spent the weekend relaxing with family and (thankfully) eating small portions of turkey and potatoes. But I wasn’t in a good spot. Thanksgiving normally is my all time favourite holiday. Better than Christmas. But this year I was so consumed by emotions that I didn’t even know where to begin expressing what I was thankful for.
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Birthday Bust

One day out of the hospital may have not been the best idea. I spent my birthday curled up on the couch in agony, waiting for the painkillers to kick in. I doubled my dose by the afternoon hoping I would just fall asleep, relieving me of the misery that my stomach was giving me. After eating my special birthday breakfast made by Bella, it seems like the pain and cramping just continued to get worse throughout the day and I was not doing so hot.

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