I’ve talked in the past about how I used to wear my ostomy, and how I haven’t found anyone else who did it like I did. I really liked the way my ostomy worked for me, so heres a video where I show you show I did it. I also put a bag on, which is weird considering I dont have a stoma.
I’ve had the talk with a few other sickies about whether or not we need medical ID bracelets. I didn’t think so for a long time but then I kept having this flash into my mind:
A car accident. I’m still alive, but some how I have ass trauma. Ass trauma that requires them to shove something up my ass. Whatever they are shoving up my ass, hits my jpouch, rips it out of place, and then even my small intestine is so damaged and I can’t even have an ileostomy. Instead I have to like…poop right out of my throat or something. All of which coulda been solved by a simple medical ID bracelet.
So after a few horrifying moments of that scenario, I started my hunt to find a bracelet. A cool one. Not one that says “I’ve fallen and can’t get up” all over it. Not one that has stupid beads all over it. Not one that screams to the world how sick me and my ass are. When I was visiting Lizz she wore one that she found on etsy. I did a few google searches and sure enough, found all the ugly ones…and even some that were beyond worse. I’d rather shit out of my throat than wear those.
I finally found one on Etsy I liked. Not even liked…kinda loved. Loved so much that I’d like to buy more and put other cool crap on them. I bought this one. The person who runs Risky Beads, (where I bought this on Etsy) has SO many choices for icons, and whether you want the font blacked out like I have, or not. The bracelet was like $16.95 or something. TOTALLY REASONABLE. I’d rather buy 5 of these, than one of those dangly stupid beaded life line help ones. Over all good purchase. I really like how it looks on, and that it doesn’t scream to the world I’m A DISASTROUS ASS MESS. You can put whatever you want on it. I chose to just put jpouch in hopes that in my disastrous car accident/ass trauma someone will know what they means. I didn’t really want to put anything with the word “anal” on my bracelet because I’d like to have a job again some day.
Disclaimer: I cannot believe I am making this post. I am no model. I am no super model. I am damn sure not Jessica from Uncover Ostomy. And I’d be lying if I said I didn’t retouch these photos a smidge…but its also hard to stare at yourself…so I didn’t make them perfect. Deal with it.
For those of you who get to enjoy summer all year long..I hate you. Here in Michigan, we’re experiencing our last few weeks of late summer, in conjunction with fall and it is awesome. For a SUPER long time I have been on the hunt for a retro style high-waisted bathing suit, to cover my disaster stomach, and also for those of you ladies still rockin’ the stoma. Well…it took me a LONG time, because I didn’t want to pay $100 +. After much hunting, I found a very nice woman named Priscilla on Esty. Her Etsy shop is called BeBops, and she makes custom bathing suits. I was a little hesitant about buying a home made suit because those things are hard to make, but I contacted her and asked her a few questions about her suits. The great thing about her suits, is that she offers a lot of mix and match for bottoms and tops. She also has suits for less than $100. So I decided to wing it, given that my criteria was that it had to be cute, high -waisted, and less than $100. After contacting Priscilla, she asked for my measurements, and my color choices as well as style and she went to work. I think I got my suit in like 2 weeks or so. Not bad.
When I got my suit I was so impressed. She had wrapped it all cute and had a thank you card in it. Presentation is everything to me! Anyway. The suit is awesome. It is just as good as a store bought suit, if not better quality. I mean honestly I wish I could put a sample of the stitching on the internet so you could feel it. The suit I got was blue with red/white trim and is super cute. The bottoms are able to be worn totally high, or can be folded down a little. I prefer it folded down a little because when it is all the way up I think it looks funny. This is just because I have a super short torso, but I bet on taller woman it would be absolutely fine.
Against my better judgement, I have decided to post pictures. Oh god oh god oh god. The pictures aren’t perfect, I’m not a model, quit judging…but at least you can see how high they go. My thoughts from the beginning is that this suit and others that she offers would be PERFECT for ladies with ostomies, that don’t want to wear one pieces. Granted these suits are not made specifically for woman with ostomies, but they are also not as expensive as those suits are. If I hadn’t been so fat when I had my ostomy, I would have been wearing this suit all the time. So check out Priscilla’s shop, tell her I sent you!
This bring me to my next topic, which is how to prepare your appliance for swimming. Dennis at the UCVlog.com, did a swimming with an ostomy video. Its got a lot of good info in there, so instead of just repeating him, you can watch his video.
And for the ladies (and men) out there who are proud of their ostomies, and their bodies, I bring you to my next video. I stumbled across this video a few months ago and I absolutely LOVED IT. I don’t know who this girl is, but her idea is fantastic. I wish she could sell it. I think this is a great option for men who don’t want to cover their bags with a t-shirt, or just don’t want their bag hanging out. Basically her idea revolved around stoma caps…and creative duct tape. Its genius!
And my last suggestion is to use Hy-Tape to tape around your appliance. I think Dennis mentions it in his video. Its a pink tape, but its waterproof and sticks pretty well. Your supplier or their website can give you a free sample.
Long story short…there is no perfect way to swim with an ostomy. But having an ostomy…is no reason not to swim.
You guys remember that awful ulcer I had, if you don’t, don’t worry because I’m going to post a picture of it below. Well initially the dr.s thought it was pyoderma. They were treating it with steroid injections, then they decided after months that it was not a pyoderma. I tried different dressings, coverings, creams and all sorts of other things for about 4 months. It caused leaks and pain and other misery. I finally got in contact with a WOC nurse here in
Michigan and she gave me another product to try. It was Algisite*M by Smith and Nephew. Its like a fiber kind of, because you rip off parts of it. I would put it in the wound bed so that it laid flush and then cover it with a very thin flexible dressing. Then put my bag over that.
Well, I didn’t have another leak, not to mention that it healed in just a few weeks time. It was AMAZING.
This is what it looked like after just a few weeks of treating it with the Aligsite. I know there are a million ways to heal ulcers, but this one is the only one that worked for me. If you’ve got one that won’t heal, and your WOC nurses are stumped, don’t be afraid to check with other ones. Its a pain in the butt, but they can be trained differently and have different resources. It might be worth it!
After surgery in March, I recovered SHOCKINGLY fast. Within 2 weeks I was off all pain meds and having a grant old time. Not being able to workout has been a bit of a torture, but I’m dealing with it. You guys saw my post about the stoma separation, and since that time my stoma has retracted into my stomach almost all the way. Its super tiny. So pouching with the stupid stoma plus the ulcer has been less than a party. Since surgery I have been living with constant leaks, max 2 days until it leaks sometimes less. One time it leaked 2 times in the same day. Its been miserable. I feel like I’m living with UC again, I am afraid to leave the house and do anything.
There have been events I’ve skipped and most recently something I had to leave early because of a leak. Its humiliating all over again. Its because of this and the separation and all the other stoma weird things that I’ve been mega depressed lately. I feel like I’ve stumped the stoma nurses because they are all trying many different things, and right when we all think we’ve got it….it leaks again. Needless to say June 7th can’t come any faster. Oh yea…June 7th is my next surgery, pending an x-ray on my post op appointment goes well.
So I’ve been trying EVERYTHING. I’ve sacrificed my pouching system, which I love. I’ve used barriers, convexity, foams, blah blah blah. I’ve even succumbed to the dreaded ostomy belt. Here is why I hate these stupid things. To begin, they are seriously ugly. Second as a girl with a waist and hips, they never stay in place instead ride up my waist thus making them useless. Next, in order to get the damn pouch to work on me right now I have to make it SUPER tight. Like…girdle style. Except because they are so thin, they cut you right in half, make an awesome shelf of fat on the top. Its hot, seriously.
Here is why I hate them the most. Lets say you’re laying down with the love of your life and you’re face to face, and you’re all “I love you”, “No, I love you more”, “No, I love you most”…and you’re hugging and touching and its a magical moment. Then your love goes to rub your back and their hand gets caught on your damn ostomy belt. Yea. Hot. Like I can hide my bag away when we’re close, and make it so that isn’t something I have to worry about but this stupid belt is ALWAYS THERE. Granted…I think it potentially works. But can’t it be an invisible force field that doesn’t ruin a moment?
Lets just say that things have been difficult. I had to take 3 weeks off in the middle of a semester of grad school, I have these pouching issues, and I’ve been WAY more dehydrated than usual. Yes, I know ileostomies and lack of colons make you dehydrated but I’m talking so dizzy you fall, can’t talk outta breath dehydrated. Its just been one thing after another, but honestly, what do I expect. This is me…nothing is every easy or pleasant.
All of my complications have really started to make me nervous for this jpouch. I feel like its doomed to fail because everything else does. I know I’m in my post surgery depression phase, but still…it all scares me a little. Er…a lot.
After a really long time of being an ostomate, I stumbled upon MeetAnOstomate.com. 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 MeetAnOstomate.com 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.
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 – http://stealthbelt.com/
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 – http://www.ostomysupportsystem.com/product.html
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 edgepark.com 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 – http://www.ostomycares.com/index_en.php?ostomy=2010023
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.
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.
I went to Cleveland last week so I could get le wound checked out. Why did I go to Cleveland you may be asking? Oh because well NO ONE in Michigan would touch it because they were not my surgeon. Regardless of the fact that I had a wound that was potentially treatable they all basically just gave me a big fat eff you and turned their backs on the hippocratic oath. Whatev.
So on Wednesday I made the damn trek down there because when I sent that gawd awful picture to Vicki, her and Fez said I should come down because there was a chance I had a Pyoderma. Here’s a link describing how Pyoderma is linked to IBD. Yet another awesome thing about Colitis…I dont even have a colon and colitis is still being an asshole. PS…don’t google image search Pyoderma unless you’re brave.
So I get there and I meet a very nice and polite asian nurse whose name I wont try to spell it was basically Cheese-u. She just told me to call her Cheese. She looked at it and said “That’s not a Pyoderma, I was expected much worse” in an adorable little accent. So I wait there for Dr. Ogilve to come and check it out, he walked in an was basically like “Oh a Pyoderma”. Fuck.
Fuck because a Pyoderma means getting steroids injected INTO THE FREAKING WOUND. Not around it, under it, over it, through it…nope directly in it. And not just one shot, nope they like to get it around and shoot you about 50 times. So I let them shoot me, and then they put some stuff that looked like spinach and artichoke dip in there and then filled it with stoma powder, then put a silvery thing on it, then a hollihesive, then paste, then a ring, then a wafer. HOLY HELL.
So I changed it again yesterday and it didn’t look any bigger/worse, but not any better. they did say I could be looking at a month + for healing time. Awesome. Super mega awesome. Good news is it doesn’t hurt unless people are poking it…
When I change it, here is what I do and here is a picture of all the crap I have to use.
2. I cover a spot on the surrounding skin that looks a little like it might do the same thing with liquid band-aid just for fun and mostly cause its makes me feel like I have a chance that this wont happen again.
3. Very gently make sure there is no other crap in the crater hole.
4. Fill it to the brim with stoma powder
5. Cut a piece that fits the size of the hole of the Aquacel which is the silver crap. Literally it has silver in there and its supposed to heal some stuff..I dunno.
6. Cut a piece of the Hollihesive big enough to cover the crater. Hollihesive is a doublesided sticky piece of stuff, that is harder than like a paste, so it just sorta protects the wound.
7. Then I put paste where the Hollihesive meets the stoma for extra leak protection.
8. Then I only use half a barrier ring, reshape it into a circle around the wafer.
9. Stick the wafer on, and eat a sandwich because its a lot of freaking work and it takes forever.
Also a tip from me to you USE MEFIX TAPE. That stuff is the best I have found thus far. Honestly its totes rad. If your insurance doesn’t cover it…so what..pay the $7 or whatever it is.
Lets hope this heals it…because more steroid injections and also a gaping wound on my stomach just really isn’t sounding like a blasty blast.