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

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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.

8 Ostomy Products I Can’t Live Without

Tucked under the bathroom sink is a Tupperwear bin full of ostomy products that I use weekly. Over the past year and a half I’ve accumulated various brands, accessories, models and products I’ve either bought or have been given.  I finally have sorted through what works best for me, and this particular stoma, and am ready to share my wisdom.

(Keep in mind all of these reviews are based on my own experience, opinion and medical circumstances and I neither advise nor recommend these products without proper medical input.)

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A Hard Pill To Swallow

In an effort to emphasize that we ALL come with a little extra baggage, I’ve encouraged friends and family to open up about their own stories. If I can talk about shitting my pants in a grocery store, I believe others can share what weight they carry and how their baggage impacts their daily lives. I don’t mean for this blog to be a platform for burden or heartache but rather adversity, perseverance and honesty. And in doing so, we may build further, stronger and broader connections with one another through empathy and kindness. Let’s be open to hearing others’ stories and also build each other up with encouragement to share those stories with confidence. Your baggage is what makes you who you are, and by sharing it we can develop a community of understanding and compassion.

So I’d like to introduce Sara: My best friend. My person. I’ve mentioned her several times throughout my own postings considering she’s been there for me throughout my UC journey. But now it’s time to share her story, as she struggles with an incredibly rare and debilitating disease of her own. I’ve witnessed first hand her tribulations and she too offers a story of hardship dealing with chronic illness. I’ve offered my site as an outlet for her to share what her baggage is, in hopes of helping her connect with others who may also face similar challenges, but also to remind my own readers that “baggage” does not always mean an ostomy pouch.


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The Cost of Having an Ostomy

(I wrote this post a few months ago and forgot to share. But here it is anyways): 

What many people don’t realize is that having an ostomy is financially expensive. Since my benefit package was too overwhelming to look at I’ve spent months paying out of pocket only for my Mom to tell me that a portion of my products are covered. But until I submit a claim, I don’t know exactly how much will be taken care of. In the mean time, my bank account dwindles and my decision to have a J-Pouch is reconfirmed with every swipe of the debit card.

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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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