Post Surgery Check-in

Hello! I really wish I had blogged my experience throughout my recovery after surgery, but all I can do now is try and remember and relay it now!

A month ago I reluctantly walked into the hospital at 6:30 am. First attempt at an IV was unsuccessful, certainly not to my surprise. I got to be wrapped up in cozy warm blankets while I was waiting to walk into the operating room. Once I was finally called in (totally sucks sitting and waiting for something you know will be awful) I walked through the winding halls into the brightly lit OR and hopped up on the table and had the "seat belt" strapped over my legs to make sure I didn't fall. The anesthesiologist came in, seemed like a nice guy, and put my IV in on the side of my hand. Not the nicest place for it, but atleast it was in. My GI popped in for a moment to say hi before I was knocked out. Before the surgery, I agreed to have an epidural. They put me to sleep before this happened but I did hear talk of bringing in the "spinal". Lovely. My surgeon came in, and this was about the time I fell asleep. 

When I woke up, it had been about 3.5 hours. I was super groggy of course, kept mumbling to the nurse that I liked her sparkly lanyard that held her ID badge. They took out the catheter, which didn't hurt at all. Just a little pressure. I think after an hour in recovery and sort of awake, I was brought to my hospital room where my mom and grandma (nanny) was waiting for me. The pain, from what I remember, was never really awful. I guess this is a combination of the epidural from the first day and pain lessening once the epidural was done. 

The first day I just laid in bed, talked with my mom and Nanny, called some friends. At the time my mind felt pretty clear, and I was very lucid talking with people, but I realize now that I was a bit foggy. I wasn't allowed to drink water, but I did suck on some ice chips which ended up making me nauseous so that was taken away. One of the worst parts of the first day was that the epidural had taken away my ability to release my bladder muscles, so I needed an "in and out" catheter twice before I was actually able to go on my own. And this is worsened by the fact that the IV is pumping so much liquids in you, you have to pee a lot! About 12 hours after my surgery I was able to pee on my own. 

The second day I was forced to take a walk, which at the time really sucked, but as I learned walking is probably the most important part of your recovery. I also got to see my incisions for the first time, and I assure you it wasn't pretty. Although it was laparoscopic, I have a 2 inch vertical incision through my belly button, a 3/4 inch horizontal incision on my lower left side, a small cut above the large one that looks more like a scratch, and another small one down low in the pubic region. There was steri strips covering them all but I could see part of the large incision and it was poofy, purple, and massively bruised. My whole stomache was very bloated too. But it was normal, I was told, and now everything looks great. I can't remember if it was the first or second day, but my right shoulder started to hurt really bad. I think I felt it more than the surgery pain. (Which by the way, was a constant dull, maybe medium type pain that I never felt go away no matter how many times I hit the morphine button) I was told the shoulder pain was from the gas they put in your abdominal cavity to be able to see everything. Eventually this went away but it was quite bad while it was there.

The next days went a little like this: wake up to morning bloodwork around 6/7 am. Day nurse comes for rounds to ask how your feeling, look at tummy, check blood pressure, oxygen levels and take temp. Brings by meds. Breakfast at 8 am. Shower. Visitors allowed at 11. Lunch at 12. Hang out with visitors or my amazing mom who was there pretty much every available visiting hour (I love you). Take walks as much as possible around the floor. Hope and pray that I pass gas!!(haha this becomes something you really want to happen, they won't let you go home until you do!) Dinner at 5. Day nurse comes to stick the awful blood thinning needle in my belly (it was horrible and stung like crazy). Night nurse comes at 7 pm and repeats what morning nurse had done at the start of her shift. Visiting hours done at 9, watch a movie until bed. Try to sleep.

Sleeping was not my forte during my 6 FREAKING DAYS I spent in the hospital. Its a bit of a touchy subject for me. I wasn't expecting to be there for so long, 3 or 4 days tops was what I was thinking. I eventually learned to ask for a sleeping pill which was amazing and helped me sleep through the night.

Food was interesting. My second day I was allowed clear fluids which was quite unappetizing but I did my best. Then full fluids was introduced which was slightly better because it included dairy. Then they tried soft solids but that didn't work. That led me to have the worst night ever which included me standing at the nurses station bawling my eyes out from the gas pains in the middle of the night. Basically what happens is when they do the resection, your intestines swell up at the site. This makes it hard for your body to digest food properly, since the swelling creates a block. So liquids were ok they got through, but eating solids just ended in me having the worst pains. There's nothing that can be done to ease this pain, and to top it off, pain meds slow down your bowels so its counterproductive. That night I stopped taking oxycodone so my bowels had the best shot at digesting. 

The nurses had taken out my IV early that day, as I had passed some gas and it looked like I would be going home the next day. That would have been 4 nights in the hospital. The day after the awful night I was really dizzy, started dry heaving after sipping water, and I was definitely not going home. I was really upset that day. I had a pretty positive attitude throughout the whole ordeal up until that point. I just really really wanted to go home and recover in my own bed. The day before I was walking almost normally, smiling, laughing, full of energy. The day after I was bed ridden, could hardly walk and was just miserable.

Day 6 was better, I ate some salmon for dinner, and then the day after that I finally went home!!!!! (the day before my birthday!) 

Once I was home, my recovery was a lot faster. Everyday I felt much better than the day before. I went for walks down the street twice a day and I noticed my pace was getting faster. First the old people were passing me. Then one day I realized I was walking like I did before surgery! That was pretty awesome! It was about a week and a half after my surgery. 

I was put on prednisone to help speed up recovery, which lasted for about a month with a quick taper. It's done now, and the only side effect i noticed was that i had trouble sleeping for about a week.no major side effects were noticed.

I had felt in the days coming up to the surgery how silly it seemed that I would be voluntarily walking into a hospital to get cut open. I had felt really good leading up to it and was questioning if I should do it or not. My doc explained why it was necessary, which helped, but I still felt weird about it. After my surgery I was told that my small intestines had grown fistulas to my large intestine, and quite quickly. A month before a CT scan showed none of them, just the phlegmon which was the reason for my surgery. They had to take out 10cm of an otherwise perfectly healthy large colon because of the fistulas. Just goes to show how crazy your body is- I had no symptoms that something else was going on. 

I had no idea what I was getting myself into with this surgery.. But know I know and my advice to myself in the future and to everyone else (hopefully this advice is not needed) WALK WALK WALK!!! It sucks and hurts and you are as slow as a turtle, but it is super necessary. It gets your bowesl moving. If they don't move your stay in the hospital and stuck with a lot of pain of food getting blocked. 

I would like to take a moment to thank my wonderful mother, my dad, nanny, aunt and uncle and cousins, boyfriend, and my numerous awesome friends who came (some more than once) to visit with me in the hospital and afterwards at home. I love you all and I probably wouldn't have been back to my normal self as quickly if it had not been for all of your support. 

Please leave a comment if you have any questions! I am more than willing to help anyone with their concerns if you are facing surgery. 

Talk to you all later! 

It's been a while!

It’s been a while, which doesn’t surprise me. I’ve never been good at keeping up with these kinds of things. The bigger reason why I’ve not been writing is that I have been feeling much, much better. I’ve been on Imuran since April and all was going well.

Then a string of events started in June and my bloodwork was a bit off, I felt sick for a couple days, but then I was ok for a couple weeks.

Enter July, and random days of awful stabbing pains. I realized that was a problem but held off calling my doc because work was crazy and it wasn't a constant pain. I had an MRI previously booked that was coming up, so I figured that if there was something wrong, my doc would see it and call me in.

Guess what? Doc called.

It appears I have something called a phlegmon. From what I understand, it’s inbetween being normal and having and abscess. My doc tells me that had I not been on imuran, it would probably have become an abscess and an immediate problem. It is still a problem nonetheless. Basically, my bowel has a perforation and there's been stuff seeping out into a little baggie type thing. Lovely, yes?

So, I am having a bowel resection by the end of summer. YAYYYYYYYYYYYYYYYY

I have a tentative date for the end of August, but once I meet with the surgeon next week he may move it up. Or perhaps say no surgery?!?! Hahaha

My boss is away this week, so I will drop this bomb on him when he gets back. I’m sure he will be overjoyed that I will have to be off for who knows how long.

Once I know more I will update.

Hope everyone is having a great summer!

Lazy Sunday

Hello there, it's been a while. My colonoscopy went well, there was inflammation as expected, but my blood work from the day after showed no active inflammation. So I guess the inflammation  my doctor saw was residual and it's trying to heal. The no inflammation may be because I had been on Cipro and Flagyl for a week before, but let's just cross our fingers and hope my body is deciding to behave itself! :)

I'll get bloodwork done again next week and see him the week after, and if my inflammation is still down we will leave it at that and monitor it every month or so. If it's back, then we are probably going to start me on Imuran. I've been feeling pretty good lately tho, so I'm having positive thoughts about all this!

I'm going to bake chocolate chip banana bread today. I've been slacking on the cooking/baking but I think it's time to get back into it. Baking & laundry, a nice lazy sunday.

Hope you had a great weekend!

Prep time

As I'm writing this I'm in the middle of my colonoscopy prep. I don't remember it being this awful last time! First of all the prep is nastyyyyy and second I can't get off the toilet enough to finish the damn stuff! Ugh :( today I got really dizzy and weak at work probably from no food. I jut want this all to end. And I'm pretty sure I can't feel my butt at the moment.

I have a wonderful announcement!

I am having another colonoscopy next week! Yay! Partytime!

..............................................no.

So, with no time to think or fret I have been booked for a scope in a week's time. A week!! grrrrrr. I am back on the lovely antibiotics Cipro & Flagyl for a week. Last time I took those they caused awful nausea that make me want to be sick all over my pillows while I tried to sleep. Even more yay! But seriously, atleast it's better than prednisone. I also got some pills to help with the cramping.

Inflammation is just hanging out, not increasing or decreasing. I think it's purpose in life is to confuse me, my family, and my doctor. Thank you inflammation for making all our lives more interesting.

I'm actually quite tired despite this post sounding like I've had 5 cups of coffee.

This blog has had 400 viewers..pretty cool. Who are you?? Leave me a comment :)

Night!

My new BFF, abdominal cramps

If there's one thing I can count on lately, it's getting nightly cramps and/or nausea. It's getting annoying. Last night I was out for dinner with my parents, and after I had got about half way though my meal my abdomen exploded with cramps so bad that I had to undo my jeans button and lean back in my chair. It didn't get better, and when we left I walked to the car hunched over. This has been happening almost every night for the past week, including tonight while I am typing this. Usually it's not so sudden as last night, but it's there. It started as nightly nausea but now it seems that cramps have come along for the ride too. I'll mention it to my doctor when I see him Tuesday. I haven't heard back about my MRI appointment yet, so I don't know if he will prescribe me anything. If I was taking Pentasa like he told me to, could all this be avoided? I'm leaning towards no. I feel sort of like a bad student who isn't doing her homework. I'm almost a bit embarrassed to tell him on Tuesday that I haven't taken it like he told me to. Oh well. I haven't been taking Tylenol for the pain but really, that doesn't do much either. My life these days is full of useless drugs. Guess it's that or the evil monster drug.

My yoga classes are going mostly well. Last Wednesday I felt really sick during my class tho. I think it was partly due to the fact that I was super tired (I didn't have my daily coffee), and partly from these night pains. I was struggling to finish the class, feeling very nauseous. It may also have been because I had gone to class 2 days in a row (Sun & Mon) so maybe it was too soon to be back in practice. Maybe my body needed more time to break from me pushing it too much.

Heading to bed now. Goodnight!

1 year ago

So about 1 year ago I was at the hospital with cramps that led to the discovery of my crohns. Even tho it's been less than a year since diagnosis, the impact it's had on my life makes me feel like I've had it much much longer. It's hard to remember living my life without it on my mind.

For the time being, I'm just taking pentasa (but to be honest I haven't taken it for 2 days..I find it so difficult to remember). I feel nauseous pretty much every night now. I get some cramps on my left side, which is weird, but I will make sure to tell my doc about that. On Wednesday I'm getting bloodwork (this will be my 3rd time in 2 weeks) and an ultrasound. No word yet on when my MRI will be.

I went to yoga today. I feel like I'm starting to get into it more, feeling better with the stretches and letting my mind go. I found it much easier to do those things when I went when I was younger, but since I started back this time my mind has been cluttered and found it difficult to get through class. I was doing some research on yoga and crohn's and came across as article about a woman who suffered from severe crohn's all her life and thought she was at the point where she would die. Then she started to do yoga and it helped her like no drug could. Interesting article. You can read it here.

I have been watching New Girl the past 4/5 days catching up on the whole series. Honestly, it is one of the funniest shows I have ever seen. Every episode kills me. I am going to go finish watching it now :)

Good night!

Another reason to hate Prednisone

I have come to the conclusion that prednisone really is the best/worst drug ever in the history of drugs.

Best- because it makes you better right away (in my case anyway)
Worst - hahahahahah. Well if you've been reading my blog you know about all the wonderful side effects, so no need to repeat them here. While all have gone away by now except for the weight gain, I have realized I am most likely experiencing another right now: post-prednisone depression

I've googled it and apparently it's a thing. While I was on the drugs I had up and down emotions. Often I felt really down, but I thought that it would go away. I know it's been quite bad for a month or two now, I would guess around the time when my rage and hunger decreased. I would get really sad and think about everything in my life that sucked. It's been happening more and more lately. Weekends are usually the worst, I think because I don't have work to distract me for half the day. To my family reading this- I'm sure this is just a side effect, and that I am actually fine. I am going to discuss this with my doctor when I see him in 2 weeks. See, right now I'm ok. Last night, different story. Sobbed my eyes out. Truly tho, I feel like I am a generally miserable person these days. I don't feel like going out. I feel like I am forcing myself to act ok and smile at work when really I just want to come home to bed. I guess I'm still able have fun when I do go do things, but it's hard to remember those times now when I am so used to feeling sad and crappy. I hardly do the things I used to do to make myself happy (cooking, baking, nail polish). Even yoga seems like a chore now. Today I was going to go, then 30 mins before I decided to not go. Granted I felt grumbly but I'm sure I would have been fine. Hopefully this goes away soon or my doctor can give me some insight or suggestions. Again, family, I don't mean to worry you about this. This isn't me, it's probably the drug monster holding on for dear life.

Today me and my parents went bowling. It was fun, especially since we really never ever hang out together. I'm sure that's mostly my fault, since as a teenager I wouldn't be caught dead hanging with them, and then it has been a habit ever since then. But now at 25 it is fun! It was my dad's first time 10 pin bowling, and he sucked the first couple turns and then he ended up winning both games :|

I'm getting sleepy now, probably will sleep soon.
Night!

My fate will have to wait

So my visit to my doctor today was a little anti-climatic compared to the dramatic beginning of the last post. Blood work came back same as last time. I'm booked for an ultrasound next week and he's putting in a request for an MRI at the hospital. We're doing these instead of CT scans (I've had 2 already this past year) and colonoscopies (I don't need to explain why this is a relief). He explained that once he has the results of these he may put me on Imuran with Budesonide, which is a milder steroid. I was taking that steroid October to beginning of December with decent results the first month but crap results the next month. Perhaps it will be more effective with the Imuran. In the meantime, I'm to go back on Pentasa, which in my opinion, is useless.I forget to take them most of the time, and gag when I do remember. But, I will take them for now.

This morning I had another cramp attack on my way into work. What is it with the ride in? Why does my body feel the need to make me want to throw up on everyone and try not to cry on the subway? I already dislike the overall experience of public transportation. Generally I find the whole situation dirty and smelly. Honestly, one train I take is actually smelly! I'm not even being snobby. So anyway, thank you crohns for making my already lovely commute that much better by subjecting me to cramp attacks. Perhaps you want to distract me from my smelly weird co-commuters? Maybe you don't want me to take a nap? I don't know what your deal is but I would really appreciate it if you would stop. Thanks :)

I was going to try to get to an earlier yoga class but my doc appointment ran late. That's the problem with end of the day appointments, you get the brunt of the late start to appointments from the whole day. I will go to yoga in a couple hours. I will I will I will!! ...I hope. I'm kind of tired but I need to get off my butt and work off this weight.

My fate is soon to be revealed...

About me going back on medication, haha.
I joke but this is no laughing matter. I don't want you back prednisone! We are never ever ever getting back together! Ok I am still joking..but seriously. I don't want it. But, we will see.

I've been grumpy and down lately. I thought my bad moods were from the prednisone before, but I've been off it for 2 weeks now and my grump level is beyond any bad moods I would have had before the medication. Winter blues? Feeling sorry for myself? Frustrated with my life? All of the above?

Yesterday my dad said "there's no use crying over spilled milk". Ironically, I did actually spill milk. As a matter of fact I spilled an entire bag of milk all over the fridge and floor yesterday approximately half a second before I was leaving for work. My cat came by and graciously helped me clean it up by licking it off the floor. So you can guess what a lovely day I had after a start like that. Today was better tho.

I'll update tomorrow after my doc appointment.

Bye!

I Heart Soup

Yes, it's true. I LOVE SOUP! Its a somewhat recent development. Since I was diagnosed and became scared to eat most things, I started making soup a lot. My favourite is cream of asparagus. As a matter of fact, I have a steaming delicious bowl of it in front of me right now ;) yum yum yum! I've made asparagus soup probably over 10 times this past year, and tonight's is the best. They're always super yummy but tonight's is better. Maybe its the 3 leeks I added...shhh don't tell my dad (haha he reads this). Well dad, if you already had some and liked it, maybe you will stop being a baby about leeks now!

Today I went to the mall with my mom to get what I dub "fat pants". As I no longer fit into most of my work pants (except for one gloriously stretchy comfortable pair), I needed to get some new ones. My go-to store didn't have the size I needed...but of course they had my old size. Moving on...we went to another store and found lots of pants in the size I needed. I went into the change room and had the discovery that they have elastic waistbands...SCORE! They are super comfy, stretchy, and the waistband will allow me to grow if my new stint on prednisone decides to blow me up like a balloon even more!

I went to yoga today. I'm doing my best to go 3 times a week. Hopefully it will help me lose the weight I gained the past 4 months and help prevent me from gaining more if I start pred again.

My mom doesn't want me to go on it and is encouraging me to ask my doctor for alternative routes to bring down the inflammation this time. I agree, but if it's that or the big stuff perhaps I can give prednisone one more shot at working. Also, my decision will be based on how long he thinks I will be on it again. I do not want to be on it for longer than I did last time, 10 weeks felt like a lifetime. My friend is coming with me this time, she's pretty good about making sure I ask all my questions.

It's Saturday night and we're deciding what to do. Last night we had a fun filled night of quadratic function homework haha. It's crazy how much I remember once I look through the material a bit. Too bad most other things in my life are forgotten too easily. Is losing my mind part of crohns? haha

Going to catch up on Pretty Little Liars now. Have a good weekend :)

Tired of today, and of Crohns

It’s been a long long day. I’m at work, it’s almost the end of day for most of us here but I am staying late tonight an extra hour to do our finishing tasks I feel like a zombie.

Yesterday I had my doctor’s appointment and unfortunately my inflammation has already gone up to 20, and that was blood work taken 1 day after stopping prednisone. I took more blood after my appointment and I’m seeing him again next week.

We sort of discussed what will happen if it shows that it’s still inflamed. Most likely I will be back on prednisone (super sad face) with imuran. I really, really don’t want to go back on prednisone. Monster me does not want to come back again. Plus there is side effects associated with long term use of prednisone (osteoporosis, diabetes, plus more), as well as imuran having its own lovely and sometimes lethal side effects of its own. One of its side effects, although rare, is cancer. Also, I can look forward to my hair most likely falling out.

Now, I almost want to say let my insides swell up with inflammation. Go right ahead!

If this course of action doesn’t work I know my doctor is thinking about Remicade, which is an infusion. From what I understand, it’s kind of the last resort, big heavy strong meds. If this is where I’m heading anyway, should I be put through another course of prednisone just to grow completely too big for my clothes, turn into a crabby angry girl again, eating everything in sight, and possibly adding on the more detrimental side effects as well?

Decisions, decisions. To be honest, I will most likely go with what my doc says. Anyone who wants to put in their two cents about this is more than welcome though, I need some perspective.

Time to get back to work, byebye!

Crampy morning :(

Wow, what a morning L

Last night I started feeling nauseous while at my friends house. It lasted the last couple hours I was awake. When I woke up this morning I felt better while getting ready for work. Once I in my car on the way  to the subway I started feeling really, really bad again. The nausea was back along with intense cramping. I kept feeling like I was going to be sick on the subway. I was alternative between covering my mouth with my hands and doing a half curl on my seat resting my head on my hands from the cramps.

These cramps are AWFUL!!! In November, before the prednisone, I had constant dull pain. This, from what I read, is the same thing but feels much worse. They are waves of intense cramps that last for about a minute and then subside completely anywhere between 2-7ish minutes before they come back again. I felt like I was having contractions! Ok I don’t really know what contractions feel like, I’m sure they’re more painful, but the situation was similar. During the cramps I couldn’t breathe, tears were squeezing out my eyes and it was all I could do to not cry out. These waves lasted for over 2 hours. I was debating whether to go back home before even getting to work or seeing how it went. I came, and for the first hour I tried to squeeze in work between the pain. It’s 11 now and for the past 45 minutes I’ve only had 3 or 4 less intense cramps, thank god! The nausea is also pretty much gone.

This was horrible. I tried calling my doc but he’s in surgery Fridays and his receptionist wasn’t in. I have an appointment next Tuesday, hopefully they stay away!!!

First day drug free :)

That's right, today is my first day not on any medication! The first day since August! This might change next week when I see my doc, but for now I will just be happy my 10 weeks on prednisone is over. 

I'm waking up at the crack of dawn tomorrow to get my bloodwork done at 7am before work. It will be interesting trying to get out of bed early enough for that :(

Lately I've been getting more cramps. Today just before getting on the subway I got pretty intense stabbing pains around where my inflammation was. And last night my cat laid across my lower stomache and I felt cramps and pain. I didn't move him and eventually it either went away or I got used to it. My doc says I tough things out too much so it could be either one really.

We got a new furnace at my house today. I'm sitting in bed with 2 sweaters, a scarf and slippers to keep myself warm. Our old was was turned off at 10am today and it was FREEZING today! brrrrrrrr. The new one is doing its best to warm us back up, but it's not quick enough!!

I'm off to my second yoga class soon. This time I will sweat and get a good workout. I gotta start working on the 20lbs I gained these past couple months :( My big clothes don't fit anymore! I'm hoping that it will go down naturally from being off prednisone, but I won't take that chance. Yoga it is! 

Oh, and here's a picture showing some of the crazy amount of cupcakes I baked on the weekend. We raised over $300! They had excellent reviews :)

 

Have a great night!

Yoga!

I finally got around to signing up for yoga :) I went tonight to a "release and restore" class which was very relaxing and surprisingly snuggly (we had blankets!) It wasn't a workout it was a couple relaxed poses held for a long time and meant to clear your mind. It was different and interesting.

Today has been quite a day. I managed to get signed up to bake 200 cupcakes to sell for fundraising at work on tuesday. So I got a head start today, and thank god I did! I made about 65 today and that took hours. So I highly doubt I could have done it all tomorrow. I'm doing salted caramel and red velvet. I got a cheap little starter piping kit from walmart, so the icing looks really nice :) 

I've been feeling mostly ok, just some random cramps here and there as usual. I have to get my bloodwork done next week, and I have a doctor's appointment the week after.

Drumroll please!......2 more days left of Prednisone!!!!!!!!

In the middle of the prednisone I felt like I had been on it forever and that it would never end. I can't believe it's almost over! :) As much as it was a miracle in destroying my inflammation practically instantaneously, I really reaaaaalllyyyy hope I don't need to go on it again. I am so glad to be back to being me and not a crazy monster. 

I'm going to try to squeeze in a yoga session tomorrow before the cupcakes. Or maybe that's not a great idea, it might kill me and then I'll have no energy to be a professional baker for a day.

That's all for now, byebye :)

2 more weeks...and then?

It’s been a while since I last wrote. Not much has changed, still feeling mostly good. I get some random cramps in my right side, and I battled a monsterous headache last Friday and Saturday. I basically slept on and off Saturday in my room with the curtains closed. Very exciting weekend!

I’m at work right now. There’s supposed to be a snowstorm tonight and tomorrow, boo! I don’t even care about the snow, I just don’t want to battle traffic to get to work.

Yesterday I went down to 10mg of Prednisone, which means only 2 weeks left! I have mixed feelings about this, about how my body will deal with being on its own again. Will it flare up immediately? Later? Never…? ;) I like the last one! But we all know this is a chronic disease and that is highly unlikely. But please, Crohns, stay away for a while. I am enjoying feeling good and eating proper food.

My moonface is starting to go away, but it’s not 100% gone yet. Hopefully it doesn’t take too long. Belly is still there and the hump. These are only physical side effects left tho, at least I’m not trapped in a crazed mind haha.

I’ve been taking it easy, relaxing after work and catching up on shows. Last night I mixed it up a bit, watched How I Met Your Mother, Raising Hope, and the Lying Game. Once I get home from work I don’t really get up until it’s time for bed. As much as its lovely and comfortable to do that, I don’t think its helping with my weight and belly situation. I really need to get going on the exercising. I haven’t been back to the gym in over 2 weeks, oops? This weekend I will sign up for yoga. I will!!!...maybe.

I was just reminded of this mind numbing ridiculous thing we have to prepare for the auditors here at work. They ask us for the same things over and over and come up with the craziest requests. Lucky for them my emotions and anger are in check these days or I might say something!

A nice weekend

I've had a nice weekend. Today was a bit exhausting, but it was good overall.

Yesterday I was kind of lazy during the day. Stayed in my pj's until 4pm..made some applesauce with my mom. I went out for coffee with my friend to our favourite coffee place after dinner. We had Nescafe and Frappe (greek coffee of course!) but decaf since it was getting later at night. Hopefully in a few months we will be drinking greek coffee in Greece ;)

Today my mom and I went out to get some stuff and then my little neighbour/sister I never had came over to do some baking with me and she also brought her homework with her. We made mac and cheese with ham and red velvet cupcakes. Our first attempt at icing was a flop (thanks Betty Crocker??) but our second attempt, cream cheese icing, recipe given by my friend turned out fantastic and delicious. I got a lot of icing sugar on me at first tho haha. 

After my neighbour left I managed to make some dinner. At that point I was dead tired but my mom was busy doing tax things so I got up off my bum to do it. I tried a potato and spinach casserole I found online, and some chicken breasts. This recipe is a bit of a test to see how I deal with spinach, as it seems that when ever I've had blood in the past couple months, I've also had spinach in the day or so beforehand. Doc says it's probably not that, but I might as well test it. If a bleed then I know, and if I don't, I got a tasty meal out of it.

Tomorrow night I'm going out for dinner with some of my college friends and some friends we met in Cancun a couple years back. We're going to a restaurant where you eat in the dark. I've been a couple times before and really enjoy the experience.

I've been feeling good this weekend, except for feeling bloated last night started around 8pm. It went away but a small tummy ache came back around 10. Not too bad, I say. 

3.5 more weeks of prednisone! Yay!

Warm cuddles

Tonight I am cuddling with my trusty heating pad, catching up on shows. On my way home I felt like I needed to pee, which turned into a pain/cramp because I needed to go so bad, and when I finally got home from work it seems that it was more than that. It's a real mood killer to be feeling great for so long and then seeing blood. Not a lot..but it's not normal, and it tells me that not everything is perfect inside. 

Last time I went to the doctors I had blood just before I saw him and he didn't seem concerned since my inflammation mark was basically non-existent. He told me if it keeps up to let him know. I'll see how the next couple days go before I give him a call. I've been reading a book called Foul Bowel by John Bradley, which is a great book by the way, and it seemed that he was good on higher doses of prednisone, but symptoms came back when he tapered to lower levels. Maybe that's the case for me too. But who knows. (On a side note, this book has me laughing hard quite often, mostly on the subway in public. But I don't care)

Miserable nights like this at least are getting me to relax and stop being on the go so much. I know I've been going to bed too late all week, perhaps this could just be my body telling me to slow down and take better care.

Hopefully tomorrow will be a better day!

Still feeling good :)

Good Morning!

It’s been almost a week since the amazing doctors appointment. I’ve continued to feel well, plus the mental boost of just knowing I’m good on the inside definitely helps. My doctor told me to eat fruits and veggies, so this past Sunday I ate a salad. It was fabulous! I was worried after how I would feel, though. No pains, but it was a little more difficult in the bathroom then normal. I had a small salad with lunch again yesterday, and today I brought cucumbers and carrots. I’m still a bit iffy about skins on apples, potatoes, etc, and oranages, so I’ll stay away from that for now.

I’ve noticed that the side effects from the prednisone is starting to tone down, thank god! I haven’t had crazy anger for a couple weeks, my emotions aren't out of whack, and my insatiable hunger has disappeared. I am happy to say I can go a day without snacking! Just eating my normal meals is good enough for me now. It’s nice to not have food on my mind 24/7. Now to work off my belly…haha.

Tomorrow is 4 weeks left on the wonderful/evil pills! I’m excited and scared to find out how my body will react on its own. Will it flare up again? Will it be ok for a while?

I’ve been having some pains on my left side, randomly over than past day and a half. Not sure what it is. It’s not intense, its just there a bit. If it keeps up or gets worse I’ll go to my family doctor.

It’s a quiet day at work. It’s sooo cold outside and tomorrow will be worse, so not looking forward to that.

Bye for now!

Best GI visit ever!

Today I took the day off work and had a visit with my GI. After 9 months of battling with inflammation...4 weeks of prednisone has killed it! My level is at 2, where a 7 or 8 is normal. I've been up and down anywhere between 15-51 these past 9 months. THANK YOU PREDNISONE!!! Although I generally hate you and your side effects, you get the job done!

This was my first visit with my doctor alone, but I didn't have my mom or friend available to me at the time. I was a bit nervous but I came prepared with a list of things I wanted to discuss, and it turned out to be a very good visit. I guess good news helps everyone relax. We had a good conversation about what we will be doing going forward after I'm done with the prednisone (5 weeks!) and talked a lot about foods. As I mentioned before, food is very very confusing to us with IBD. I asked him his opinion on food causing flares (no), do symptoms mean I am damaging my body or is it just pain (no damage). 

I made him tell me a solid do not eat list: seeds, popcorn, no steak, no raw meat (I told him I tried raw salmon and he asked me to please not eat that, incase I get an infection), avoid high fatty foods, and high carbs. 

Yes to fish, chicken, veggies (he said to eat salad..so I will try. This will take some time), take omega 3 and probiotics. He also gave me a 2 week supply of my probiotics Align, which is awesome because it costs about $40 every 4 weeks. 

Overall, a good visit! Now to see how my intestines do when they're off the meds. I'm a little worried that this is just a temporary fix, but I'll cross that bridge when I get to it.

On my way back home from the doctors I popped into my old jobs to say hi to my old coworkers I haven't seen in a while. Everyone said I've gained weight and my cheeks are chubby. I took it well, it's true anyway. But I was also told that I look a lot better, which is great because usually they tell me I look tired and stressed. 

I'm off to check on my pumpkin muffins that are in the oven (thanks Nanny for the silicone baking cups, using them now!) Bye for now!

:)

Cooking for Crohn's

It is seriously insane how my mood goes up and down. Today's been great! Busy but smooth day at work (which means it went by pretty quick!), then I went to the gym for the cardio dance class which I love, and made some yummy gnocchi with spinach and pesto for lunch tomorrow. I ate a bit...you know, to make sure it was good enough to take for lunch...haha

I've been making a lot of homemade food recently. Actually, up until this summer I barely cooked. And by barely I mean I didn't know how, except for a few basics. My mom isn't really into cooking, so I was never taught. Since I was diagnosed 8 months ago, I have become much more aware of what foods I'm putting in my body. I neverrrr eat fast food anymore. I go to restaurants very rarely. And I cook pretty much all my foods fresh. 

My diet had to change when I was diagnosed. Gone were the days of snacking on fresh fruits and veggies, salads, nuts, popcorn, etc. I like finding recipes online that allow me to have yummy meals that won't cause me problems. (There's the tricky part- does food cause symptoms and flares?! Again...confusing! I'll always be confused!)

I'll admit I've gone a little overboard. My friend thinks I've gone nuts, and I'll give her that. I've even made my own yogurt and bread, which is a little over the top but pretty decent skill to have if you ask me! The yogurt doesn't turn out as smooth as store bought (which I only eat plain these days, checking the label to make sure there hardly any ingredients), but the bread turned our really well! Even my dad said it was better than the store loaves. Lately I've been making a lot of mac & cheese, experimenting with add-ins. So far I've tried kielbasa, ham, and cauliflower. I enjoyed the last 2 the most. My mom's side of the family is half polish, and I've gone there 3 times. I've made pierogies, pork, chicken, potato and cheese...honestly, store bought pierogies are an abomination. Look up a recipe and make some fresh, or find a Polish store and get some there. You can thank me later.

I've made applesauce the past 2 weekends. Since the apples are cooked, it has been ok for me to eat. It's been nice, my mom and I sit down at the table and peel apples for a while and talk. And then the house smells delicious while the cinnamon covered apples cook for an hour. This past weekend I added some maple syrup in...yum! I've made apple butter in the past (just let the applesauce cook longer until the water absorbs) and pumpkin butter as well.

Soups are my favourite thing to make because they're really tasty and so easy on the tummy, which is important for those days when your not feeling great.They're all pureed, but mostly have a thicker consistency so you feel pretty full when your done eating. Some that I've tried are:

• Cream of asparagus
• Asparagus and leek
• Potato and leek
• Potato and onion
• Butternut squash
• Sweet potato

I wasn't a huge fan of the sweet potato, but it was pretty thick and I might have used too much potato or not enough liquid. 

One yummy easy dinner I made a couple months ago was baked eggs. I saw a picture in instagram and winged it. I took a muffin pan, put whatever sandwich meat I had in the fridge (it was ham) into the cups, layered a few pieces of spinach down, then carefully cracked an egg into each cup. I sprinkled a little salt and pepper, and topped it with some cheese. Popped that in the oven for about 18 minutes...at 350? not 100% on the temperature. As long as the egg is cooked, it's done. Really tasty!

As I find new ideas, I'll write it in my posts.

Time for bed!
 

Feeling down

The last couple days I've been feeling kind of down. Today's no exception, the only difference being I'm at home with my thoughts instead of at work keeping busy. I feel like I'm in a rut and don't know what's happening with my life, what direction I'm heading, what things will be like a year from now. 

My best friend is home right now which is massively helpful, but she is leaving in a month or so for a while. I'll see her at some point because I will take a trip, but I don't get out of my house much otherwise. And when she leaves I won't have the option of going over to her place. I don't like to spend my money too often because I have an addiction to leaving the country for preferably a month a year for Europe, and I need to save for that. My dream is to move to Europe; I've wanted this for years. Money gets in the way, resident visas, and now my health. It's a very frustrating situation for me.

I blame the prednisone right now for my feelings. I admit I have these thoughts without being on the meds but I can generally deal with them better. I used to speak with my friends over in Greece quite often but they don't come online much anymore, and when they do it seems like we've grown apart. Talking with them used to help me feel connected to the life I wanted. So no talking with them...best friend leaving....my body is turning into this thing I don't recognize...other things I can't even put into words...it just sucks.

I went to the gym today and felt pretty dumb. I guess that's the idea they're going for to sucker you into getting a personal trainer to help you learn how to use everything. I got a 2 month pass for $24 and the guy tried to offer me a something like an 11 month membership with personal training for $190 bimonthly. Riiiiight. But he put me in a mood feeling like I don't know how to take care of my body and get it to where I want. I know prednisone messes with body fat but I know I needed to work out before I started it. While yes, my pregnant looking belly should go away once the meds stop, I'm still won't look how I want.

These gym thing stresses me out. It's too macho body builder in there. I'm uncomfortable and told him so. Which sparks even more suggestions that if I have a trainer, it will be better.

I also tried to explain to him that I know I eat too much and need to stop my snacking. He said that I should find healthy snacks. I said I can't eat fruits and veggies, and he just didn't get it. He thought I didn't like them and I said no I have trouble digesting them and it can make me sick. Cue the "uhhhh...so maybe I should set you up with a nutritionist.." Thanks buddy, I have one. It's not helping.

In clothes I usually don't feel too bad (not at the moment of course, but in general). The problems arise if I need to be in a bathing suit and I feel really lumpy. Once I'm in Greece and I have the mental high of being in my perfect place, I usually don't care too too much, but I don't like pictures if I'm not feeling confident.

What I think I want is to get a membership with hot yoga. That is where I feel comfortable and happy and it relaxes me. Relaxing is important for us with IBD..if your in a stressful situation it can cause a flare. Yoga is just great all around, and makes me feel good about my body after I go a couple times. Problem is that it is soooo expensive and my work benefit would only cover 4 months. But I'm going to consider it, since going to the gym doesn't seem like my cup of tea.

This post was a downer, I know. It helps to have a rant though, I feel slightly better. It's a beautiful day today (somehow 12 in January??! Usually about -10 now) so maybe I will head outside for some fresh air. 

Bye for now

Purple Curtains

Just an update on my thrilling story of the evasive purple curtains:

I randomly decided to check a store again, but a different location, with my friend. Just to see if maybe they got new curtains in a week. 

I show my friend "look there's no purple curtains! Only dark! See..brown, black, grey...............purple?!?" 

She thought I was crazy. 

Then we go to the linen aisle, to get purple pillowcases to match. Theres a wall of brown and blue sheets. Miss Lucky walks up and reaches her hand under some packages of sheets and retrieves purple pillowcases. Unbelievable!

So now I have my purple blackout curtains and purple pillowcases and I'm never going shopping without her again, as it is clearly a waste of my time.

The End. 

PS- That is my cat Simba :)

Starting at the gym

My work gives us something called a benefit credit which we can use towards health or wellness. We have to decide which one. This was tricky for me, because if I calculated correctly, it works out to about $400 a year. Now, being as I have Crohn's and barring some miracle, I will require prescriptions. My coverage is 80%. So I could use that benefit to refund me for my portion of prescription costs, or I can use it towards wellness costs. For wellness, my work will pay gym memberships, athletic clothing, stuff like that.

I've decided to use it for a gym membership. It was difficult to decide, but I figure that:
a) My doctor has taken me off Pentasa ($40 every 6 weeks)
b) I'm also not going back on Entocort ($120 for 3 months)
c) Prednisone only cost me $55 total for the whole 10 week prescription, as I didn't have insurance at the time.

Being that the expensive pills are not going to be prescribed to me, and prednisone is dirt cheap in my eyes (compared to the others), I think it will be more beneficial and useful to get the gym membership.

Plus, I'm ballooning up and it's not cool. I saw a girl last night I haven't seen in months and she squeezed my chubby cheeks saying "they're soooooo cute!" Thanks! Moonface is totally super cute! Not.

I've gone to yoga and cardio dance class so far. My body feels broken but I feel great that I'm moving and working towards getting my normal body back. I know once I'm off prednisone (6 weeks!) I will get back to normal naturally, but even before the meds I wanted to get back into shape. I love the feeling you have after a good work out. Since there's not a lot of exciting things happening in my life these days, I gotta grab some extra boosts of happiness where I can find them. 

Tonight on my way home the subway had issues. Trains were turning back before my stop, and it was madness. I kept my irritation in check until I saw sneaky people going up the empty platform on the other side and sliding into the train before any of the other 500 people on the right side of the platform got a chance. We all had been waiting atleast 20 mins and 3 trains left full we couldn't get on. You can't even blame me for being mad, I'm sure everyone else waiting with me thought it was rude. Anyway, despite me wanted to offer them a few choice words, I kept cool. I was proud of myself! 

One last thing...I ate half a bag of Smartfood Popcorn the other day. Didn't die, didn't feel pain, nothing. What is going on?!?!?!

Today is a better day

Yesterday after my massive irritation on my way into work, I became quite calm. By lunchtime I was feeling great! These up and down emotions from prednisone are nuts. 

Today I've felt good too. Still blah about my weight, but I'm not wanting to fight people. Oh, and I do have this stupid buffalo hump. I was at my friend's house last night and she gasped sooo loud when I showed her going "oh no! oh no!" so I guess I'm wearing scarves for the next couple months!!!

I made myself a list of things I wanted to get accomplished this weekend. I woke up at 9:30 and got at them right away, and I did quite a bit. Laundry, made homemade pierogies, homemade applesauce, picked up my probotics and a new pair of running shoes. I found a deal for a gym in town for 2 months for $24..this is perfect because I'm getting a membership through work but that won't happen until March. So I'll go tomorrow with my new running shoes :) (they're pretty..black and pink!)

My friend gave me a new name: ADD energizer bunny. Prednisone makes me go go go all day long. She even noticed I text her more haha. I like being more productive though, so I hope I get into the habit of it enough for the rest of my time on prednisone (45 days/6.5 weeks..but who's counting?)

I am on a mad search for purple blackout curtains (so I can sleep during the day if I'm up all night). I know I  am being stubborn about the purple part but I've never had curtains before and I really want it to add some colour to my room! Too much to ask for? I've been to atleast 5 different stores with no luck. All I can find is black, brown, and grey. My room is already brown and tan colour, I don't want to add more of it. I'll probably have to order some online.

Going to go watch Raising Hope now...hilarious show! Goodnight!

Watch out...

Today I feel like a monster. My temper is very short these days to begin with, but today seems worse. I was on my way to work and people were just making me crazy! I almost screamed at an old lady for stepping back slightly when the train was approaching the station and she pushed into me a bit. This is not me! I had to try so hard to keep my mouth shut, what I wanted to say to her was really mean and unfair. In my defense, my stomache was really hurting me and all I could think of was reaching the bathroom a couple stations away, and there was a train delay at the time. But still…I should not be wanting to tell off innocent bystanders.

Also, I stepped on the scale this morning and wasn’t happy with what I saw. I need to stop my constant snacking! But I feel like my crankiness will get even worse if you add hunger to the mix. I worry for society. But I can’t keep gaining weight or my already getting too small clothes won’t fit me at all. So add stress over my weight to what I’m going through too. And my chubby face. And I think I’m getting this “buffalo hump”. Ugh. Feeling crappy body and mind wise today. I wore nice clothes to perk me up, it helps slightly. I strategically picked out my clothes to hide my bulging tummy. The first outfit I picked today made me look like a whale.

I hope today goes by quick and I can go home. I miss my sweats.

Catching up with friends

Last night I went out with my college friends to catch up. We went to all you can eat sushi. I was a bit nervous but also kept in mind I survived the tomato...so I ate whatever I felt like! Ok, I'll admit I didn't go crazy...but I hadn't tried seaweed since diagnosis, so that was a risk, and there were cucumbers in some of it. So that's about the extent of my rebelling with sushi as far as I could tell.

We were at this place for 2.5 hours...man they are slow bringing it all out! But it wasn't bad for us, we barely ever see each other. Some were seeing me for the first time since crohns, and all of them were seeing me on prednisone for the first time (except one friend who works with me). At one point I got laughing so hard that my chest and shoulders hurt..bad case of the giggles. Crazy emotion time! They asked questions about the meds, what foods I eat, and all that. They were all interested and understanding. Lately I've been blurting out things without thinking, which I did, and they laughed at me..what are friends for right? I didn't randomly cry, so I say it went well!

I came home and flopped on my bed in a food coma, passed out and had THE BEST SLEEP EVER!!!! I haven't woken up feeling so refreshed since I started prednisone 3 weeks ago (which feels like forever). Today at work I felt ok..until I needed to use the washroom. Then I felt nauseous. Not sure if it was just me feeling crappy in general or if it was the sushi wreaking havoc on my tummy. Either way, it passed and I felt ok the rest of the day.

I tried my best to not snack all day long (failed). But I did get a 2 month membership to a gym for cheap...so I'll put my prednisone energy to good use. 

Tonight I made some yummy pureed potato and leek soup. Its nice on my tummy :)

Time for bed! I'm wide awake tho..not looking promising. 

One of those nights :(

It's 2:45am on Saturday night and I'm awake. This might sound normal but it's not when you went to bed at 11:45pm. I've been awake since 2 and have a feeling I won't be sleeping again tonight. Prednisone.......you suck.

On the bright side, tomorrow is Sunday so I can catch up on my sleep at some point, unlike when this exact situation happened last week on Xmas eve and I had to work for 10 hours afterwards.

Have sweet dreams for me!! 

I have no idea why it changed but I wrote this on Dec 30, 2012

A bit of frustration...and I ate a tomato!

Today I decided to have a toasted tomato sandwich for breakfast, and I didn't feel like dying! I've been so careful about what I eat the past 8 months and I feel sick anyway. My doctor doesn't believe that food causes symptoms and always tells me to eat whatever I want. So today I decided to test the theory. 

Crohn's is a very tricky disease. I'm scared of eating a lot of different foods for fear it will make me sick. But does food actually cause problems? Stress? Lifestyle? Is it completely random? There is so little know about Crohn's and it drives me CRAZYYYY sometimes. To me, it is normal to want to fix your problems. You have the flu? You rest. You don't go for a jog, run a marathon, whatever. You rest and drink gingerale and take an advil and ride it out. With Crohn's you don't know what you can do. Sure take meds, see if they work, but in the grand scheme of the disease, we have no clue. We don't know how to fix ourselves. I thought not eating fruits, veggies, seeds, nuts, popcorn would help. But then why do I feel like crap for weeks on end when I'm eating very basic easy to digest foods? 

Anyway..there's my rant for the day. Going to bed soon. (By the way, I've never in my life been so excited to wake up to my alarm at 6:30am as I have been the past couple weeks, just knowing that I made it through the whole night sleeping, haha)

Bye for now!