Supporting the Colitis, Crohn's, ostomy and J-Pouch community one butt joke at a time


Post Surgery #2

Lucky Lass

Today is the day before my surgery. I’ve already had my last meal, all of my appointments and yadda yadda. Since I’ll be in surgery for St. Patrick’s Day, I wore my “Lucky Lass” shirt today for all of my appointments. I would say it wasn’t very lucky because for the first time ever the PICC team had a hard time placing the PICC not in my neck….(the picc line runs from your arm up and around and is supposed to go down, mine kept going up into my throat). So we got that fixed, but it seems to be bleeding more than normal. The PICC team peaces out at 7pm…its 8pm so I’ll just tough it out until tomorrow.
Good news is I have to be at the surgery center at 5:30am…which is good cause I’m the first surgery of the day. For my last surgery, I was the last for the day at 4pm and I didn’t get to eat the whole day so I was super pissed.

I had two of my UC BFFs meet me at the clinic today. All of us have, have had, and will have Dr. Remzi as our surgeon. Colin is done, Kevin hasn’t started. I talk to these two guys pretty frequently online but it was really nice to meet them in person. And it was really cool that they made the drive into CC to see me.

I bet you don't have a stamp like this...

When I went to see Dr. Remzi, Dr. Ong came into see me first. I didn’t remember his name, but immediatly remembered his face. He’s the doctor that told me the last surgery didn’t work, coldy and abruptly after my last surgery. Total Ahole. I could tell he remembered me, which makes me wonder if I lost it on him when I was drugged up last time. Oh well, he seemed nice enough this time…Dr. Remzi came in, and said that he was very confident that we’d be able to do this surgery tomorrow, but there is always “the god factor”. He didn’t say if we’d have to switch the stoma site, or if we could complete this surgery in one step. Its all still a mystery.

There is still a lot of questions. A lot of anxiety. But…we’ll all know very early tomorrow morning what the outcome will be. I’ll update as soon as I can type coherently. Thanks to all for the the well wishes…and hell, I’ll even take your prayers at this point.

Dad to the Rescue

It's a sweet dress, I know.

In August of 1992 I was 8 and a half years old. Hurricane Andrew had just hit Florida and the rest of the nation watched in shock. My father owned a new business here in Michigan, where he ran Bobcat machines, and could do disaster removal. His small company was hired to help with the aftermath of Andrew. Given the prospect of good pay and a guaranteed workload, he loaded up the trucks and machines and went to Florida for a few months. I remember this time vaguely but I remember missing my dad. I remember it being really hard on my sister and especially on my Mom while he was gone. It was hard then to understand the sacrifice he was making to help make our lives better at that time. At 8, I didn’t understand the sacrifices both of my parents would make for me throughout my life.

My Flood

Today I am 26. Today in my first home that I own by myself, the first basement I’ve ever had flooded. The first phone call I made was to my parents. Because I had no freaking idea what to do. Mind you I called them at 7:30am…waking them both up, but what did my dad do? Got up, jumped in the shower, headed to Home Depot and then made the 40 minute drive to my house to help. Today maybe all he did was sacrifice some sleep and some of his time (and money) but he still did it without hesitation.

Father's Day 2010

We were talking today about my cousin who has a very sick baby. I said that I understand having a grown child who is sick has been tough, but I can’t imagine having a sick infant. My dad said that it doesn’t change. I’ll always be his baby and its never gets easier watching me go through tough things.

My parents have sacrificed so much, just so I can be sick in the easiest way possible. So much of their time, money, favors, and even their own health. I don’t think there are even words that come close to the gratitude I feel for them. Being sick has definitely brought my family closer in a way I’m not sure would have ever happened before. I know that I can never give them their time back, and regretfully probably never their money. I hate feeling like they are missing out on retirement, and travel, and the fun parts of having grown kids. I just hope that I can get healthy soon, and spend the rest of my life showing them how grateful I am for them and their help.

Sometimes my dad tells me that I am his hero….I have learned from the best.

Guilty McGuilterson

As a “sick” person, I have had to rely on friends and family A LOT. Way more than my comfort zone allows, and my pride permits. But regardless I’ve had to learn to suck it up. While ALL of the help and support is is amazing, I get left with this sense of guilt. Guilt perks its little head up in small places, like my surgery being scheduled on my parents anniversary, or my sister having to find a late night babysitter for her daughter to take me to the ER. I know that these people do these things because they want to, even need to, but there is still the overwhelming amount of guilt that comes along with being sick and having a chronic illness. Its feeling like you can never repay those people for their help. Its feeling like you never want to ask for help for anything extra because they have already done so much for you.

Guilt is being 26 years old and still needing your parents to help you with your bills, because your illness got you fired from your job.
Guilt is your 83 yr old grandfather shoveling 10 inches of snow in your front yard.
Guilt is borrowing time, or money or help, full on knowing you’ll never be able to repay that.

Its something you try not to let get your down, but its always there. I try to “give back” by volunteering and helping out with my abundance of time. But I know that doesn’t directly benefit those who have generously helped me. After all, thank you cards only go so far.

Other than showing gratitude, I feel like there isn’t anything you can do. I know some people..( ahem, my mother) just like to be able to help. She likes when shes needed and when she can help. But I just wish I could write you all a giant check, or send you all on cruises (except my dad cause hes terrified that people don’t come back from cruises) or do something to make your lives easier in the way that you’ve all made mine.

This is horrible writing because its flip flopping between being directed to certain people and to the internet. But I guess what I’m trying to say is that we all have guilt about being sick. Whether its money, or time, or help cleaning our houses, whatever, its makes us feel guilty. There is a certain level of accepting that, but I think if you just always remember what other people have done for you, and show them you’re thankful, that can be enough. At least I hope it is. Land

After a really long time of being an ostomate, I stumbled upon I was like “oh hey, I could meet some others, who know maybe even help some people down in the dumps”. Yea…not so much.

The first thing I noticed about this website was the structure and function of it, is HORRIBLE. I mean impossible to find anything. I did a few searches and didn’t really find anyone in my area, but that was no biggie. So I just left it alone for a while…well…they email you about every five seconds. I was getting boat loads of emails and other things, so in my little brain I was thinking “oh great, people I get to help”. When in reality it was more like “oh great, another creepy old man”. My experience with was like a scene out of a lifetime movie. It was boatloads of creepy old men sending me weird emails.

They have this little ticker on the left hand side where it shows you who is online and their age and sex. I kid you not, I never saw anyone who was under 40 and maybe one girl every few days.

So I let it go. I was like, “you know maybe there are a few diamonds in the rough”. Wrong. Creepers all the time. I finally cancelled my profile. All of the people who contacted me said they too had ostomies, but I’m skeptical. People are weird.



Fatty on the Inside

Pardon my myspace-esque picture. At least I didn’t take it in a mirror. Also there are no duck lips or peace signs, so cut me a break.

This weight loss thing. Ugh I’m sure you’re all tired of hearing me talk about it, but its an obsession at this point really.

I made a chart of my weight for as far back as I could calcultate. I called doctors and asked them what their records were and all that jazz. I was kinda surprised at what I found. I didn’t get the stats as far back as high school or anything but I got back to 2005.

In my brain I was far thinner than the numbers say. In my brain I was far happier than what I feel about my weight now. The reality is I am 4lbs shy of my lowest recorded weight from Nov of 2007. My weight right now is 157.8. Do I have a distorted memory of what it was like back then…I mean..I wore bikinis back then…and didn’t look fat.

Am I just more motivated now? Do I care more now? Am I working for this infinite number that will never give me happiness?

I am not that girl that cries and complains about her weight and asks for empty compliments. As of today I have officially lost 40lbs exactly from when I was at my highest recorded weight.

Why does this literally mean nothing to me? I just keep looking at it like, not a big deal, not an accomplishment, not enough. I know that because I had to lose all this weight for surgery its become an obsession, and to be honest i’m thankful. I think I was borderline to giving up and ballooning. When I was 197lbs I was so depressed in life, not just weight. But here I am 40lbs smaller and it just feels like meh, aint no thang.

These last 10lbs or so that I’m trying for are really hard. Honestly I’m working my ass off for them. I work out 5 times a week min. 3 of those times are with a trainer. Yes I eat right. Yes I drink enough. But man. Its really really hard.

But here is what I’ve learned. I may not be losing the pounds I want to, but I’m losing inches, and I’m getting stronger. I’m seeing a change in what I can do, how hard I can work. I’m getting really good at pushing myself. I’m excited to keep working with my trainer right now (just worried I can’t afford it after surgery). I am worried that surgery will set me back again. Ugh. Its all a little overwhelming.

The good news is..I weigh less than I did in 2005…but not 2007…but I think I’ll get there. Its only 4lbs. I think that is my new goal. If I can get those 4 lbs, that officially means I will be where I was before I was sick. Before UC was even a thought in my mind.

The Big News

I’m gonna tell you all the potentially awesome news…just don’t tell my dad. I’m serious Internet, if I find out one of you turds told him I’m gonna hunt you down and stick stuff in your stoma.

Anyhew. I ended up telling my mom about this news, and her and my dad were the two I was worried about. I just didn’t want to get anyone’s hopes up. We’ve all had so much disappointment through this process, I felt like I could protect them from this one if it doesn’t work out. But at my last appointment with Remzi, he said that since the bowel wall is playing peak-a-boo, he might just finish the whole shabang up in this next surgery. I KNOW.

I googled "nervous" I got this. The article it came from said "His penis makes me nervous"

So lets talk about how this surgery is like the biggest day of my life:

  • I’m working my ass off to lose this weight. If I dont get the lbs down enough, I don’t get the surgery,
  • There is still a chance this surgery won’t work and I’ll go perm ileo.
  • He could move my stoma site and keep it there until the next surgery
  • OR he could choose to create the jpouch and hook it up all in one swoop.

Basically Dr. Remzi is my god right now and hes choosing how my life will work from here on out. And hes making that choice while im passed out, and sliced open on a table. You wanna be me, dont you?!

There is a lot riding on this surgery. Like a lot. Each one of those scenarios has a seriously different outcome. So here I am, back in limbo land. So pray to your God or bow down to your Satan. Do whatever you gotta do to get me a new butt.





Monday I went to CC for another steroid injection and also an ileoscopy, and to chit chat with Dr. Remzi and Dr Achkar who is basically the Pyoderma Prophet.

Lets start at the beginning:

I did the ileoscopy, I got sedated. I have vowed to never do any type of scope EVER without sedation ever again. Eff that S. So that was easy, painless, totally fine. Also no signs of crohns anywhere, so that is good news. Its sorta relief.


Then I met with Dr Remzi. He had all kinds of news, good, bad, ugly, weird. So he looks at my Pyoderma with Dr. Achkar and they kinda banter back and forth that it is now, not a pyoderma. (great after I just bought a $100 cream for it). They decided it was not acting pyoderma-y and that they dont know what it is, but their best guess is an abcess. An abcess in real people language is an injection under the skin. So its actually better that it has popped out. Because I’m not showing signs of an infection that means its doing ok but not healing. We stopped the pyoderma treatments and he decided not to inject it with steroids because…..

Dr Remzi thinks that the side of the wound is a tiny bit away from the wall of my small intestine. How did he deduce this you may ask? HE STUCK HIS FINGER IN MY STOMA. If I coulda, I woulda crapped my pants. It was like, lets stick stuff in Jackie’s Stoma Day. It did NOT hurt, I felt pressure but it was just all kinds of weird. So anyway.. if he injects it wrong or it erods away anymore it could open the bowel wall…which is bad, and I’d be pooping right into the wound. All kinds of bad. So since I have only 28days (YES!) until surgery he said we’re just going to leave it alone.

BUT…here is the bad news. There is a chance, that because of this wound and its proximity to the stoma, that he might have to move the stoma to the other side…FUCK. This would suck. But honestly…seriously…what is one more giant scar. Its not the end of the world at this point. This body will never see the sunlight again in a bikini.

But we did talk about bringing in a plastic surgeon again to do the close up scar this time, so it looks less butch.

Also..there is other potentially really good/amazing news, that I can’t write here. This is such a lame ass blogger move, and normally I wouldn’t do this (and I might change my mind) BUT there are certain people who read this that I can’t really…eh whatever I’m not telling you right now. BUT just know it could be really good.

Then I met with Dr. Ashkar (a.k.a. Pyoderma Prophet) and discussed this pyoderma/abcess and how we all hope it goes away and I live happily ever after.


So that was Monday. I feel good, I feel confident, but the new stoma site doesnt thrill me. We shall see. Also as an update as of today I am 159.6. Thats 2lbs from 30lbs lost since August. I’ve got 28 days to get the 12 total pounds I want!


Ostomy Belt Review

Now that I have been working out, I have found that keeping the bad where its supposed to be and keeping it secure is a bit of an issue. There are a boat load of belts and other systems to keep your bag in place and I have used a few of them but I also know of a few others. Note: This is not about the Hollister/Coloplast/Whoever belts that hook to your wafer. Heres the run down on ostomy belts:

Stealth Belt –

This is one of the first belts I found when I first had surgery and I was on the hunt to cover this stupid thing up. I have read a few reviews of the stealth belt and there are many people who say its a total bad ass. From their website I’m pretty sure that you can customize the size/pattern and they are waterproof for swimming. But I have never actually tried a stealth belt because they are expensive as all get out. Starting at around $80, I have found MANY other options that I think are just as good. Now if you’ve got a permanent ileo, maybe this is a good option because you WILL get your use out of it. For me, and the other temporary people. Meh, I’ve had better.

Phoenix Ostomy Belt –

I heard SO many people talking about this belt when I first got my ostomy and started looking for ostomy belts. It seemed to be the perfect one for me, because I wear my ostomy bag sideways. I found a REALLY amazing guy online who had two that he offered to send me for FREE. Starting at $50,  a free belt was the perfect price. So I got them shortly after my first surgery and much to my chagrin, they were to small because I was too fat. Boo. So…I found out, through they sell these and I got to bill it to my insurance company. BONUS. So months later I got my belt. Now call me a dummy, but I found this thing seriously complicated to put in. I found it bulky after it was on, and more than complicated to get it set and in order. Again, for $50 its a good idea, but I have and can find BETTER systems for much cheaper. Not to mention if you buy this one or the stealth belt, you’re going to have one, MAYBE two? We all know that you can and will get poop on them, so having multiples is a definite perk. When things are $50 and up, getting more than 2 gets really complicated. In fact, I think I’ve got a large and possibly a medium I’d be willing to send to someone else because it sucks so bad. Maybe you will like this belt.

There are a lot of other “knock off” Phoenix belts, they all basically do the same thing. They all look complicated and they are all expensive.

Protective Ostomy Belt –

I also have not worn this belt. Heres why. I wear my belt sideways (which I TOTALLY recommend) This belt is really long. I wanted something much smaller. I also feel like when you’re wearing pants with belts similar to this one, they are just going to get bunched up and move and will defeat the purpose. If you’ve tried one like this, or the ones over at Ostomy Secrets let me know if they work for you.

Belts That Actually Work

Here is what I have learned. Most clothes, underwear, pouch covers, belts and bands made FOR people with ostomies are totally impractical. Granted most of them are actually made by people with ostomies but often times I think there is a disconnect. They are also very short runs of almost all of the garments so they are really, really pricey. So this is what I do because I’m broke and I also think that these solutions are not as simple/practical as I’d like.

Two Words: Tube Tops or Belly Bands

Now for all you dudes outs there, I get that the idea of wearing a tube top is weird but whatevs, you wear your poop around in a bag, get over it. The tube tops that work the best are often times the cheapest ones. The ones that are specifically the bandeau are the right size to cover my bag sideways, and they also come off and go on really easily. They come in about a billion different colors, and most often are one size fits all, which is actually pretty great. Even if they are sized I’d say go small, because they stretch out and the whole point of it is to keep the bag close to your body. Tighter the better. These actually lay flat to your body, keep the bag flat, and have no stupid buttons, snaps, velcro, or do-dads. The one in the picture, I just ordered from Amazon for $5.50. I haven’t tested it yet but you can always get cheapo clearance bandeau tube tops. That seller on Amazon, has about 1000 colors and combines shipping prices.

The other thing I have used are pregnancy belly bands. I have a few that have lace along the bottom so they can stick out of the bottom of my shirts and look like just a layering shirt. Its actually kinda cute. The other thing I like about these is that if i fold them in half I get double the support when I’m running or something else in the gym. I have bought a few of these in the past (the cute ones) for like $12/ea. Again buy smaller, they stretch out and mine are a bit bigger than I’d prefer.

I’ve also talked about how maternity jeans got me through my fat days and post surgery days. I still stand by that. But obviously those wont provide support in times where you’re working out or doing heavier activity.

What I like about these bands/tube tops is that when you want them there, they willbe and when you have to empty your bag or move them its simple, you just lift them up. The other belts are all complicated. You can also have 10 of these if you want for the price of just one of those other belts. I personally think these are much better choices.

What do you use, if anything? Any great workout secrets for keeping the bag in place?



UPDATE 1.15.11 –  I got my tube tops from amazon the other day. I ordered black and tan and they are AWESOME. They are tighter than I had expected but thats good it keeps everything in place. I’m gonna go work out in one right now!! I’ve also found that having a tube top on it, helps with leaks too. It doesn’t totally protect you but it gives you at least one last line of defense from getting all over your clothes.

The Ass App

I’m a huge fan of any technology that is useful and not a waste of space on my droid. I have had a lot of apps that promise to be helpful but low and behold most suck.

I recently found this one, the one that SHOULD have been called the “Ass App”. Its not, but it would make it much cooler.

Its a free app thats good for Android or iPhone. Its actually called the GI Monitor. Basically it helps you track all your poop and how you feel. Back in the ‘ol colon days this woulda been helpful for when my doctors asked me those exact questions. I never wanted to have a written journal monitoring my ass and what did or didn’t come out of it. This would have been far superior. So maybe I’ll snag this sucker when I enter into the Jpouch part of my life. Who knows.

Here is some more info

Apparently they also have a Colonoscopy Prep app. I’m no so sure what good that will do …unless it just reminds you to keep pooping for a few hours. I’m pretty sure the prep for that is pretty self explanatory.

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