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Posted 2/11/2012 6:17 PM (GMT 0)
Hello to all you wonderful people! I've been lurking here for awhile now but after last night's events, I felt I could really use a helping hand from experienced people and people going through the same ordeal. I'm very young (teenage years) but I don't feel very comfortable giving out my age yet. :P

In March 2011 I was diagnosed with Crohn's after experiencing the symptoms for two years. I had a very severe fistula. Had. I still have that darn fistula. This is why I was given an ostomy. I've had 9 surgeries since my hospitalization in March and in August one went very wrong and I spent a week on the couch crying and not eating food, constantly on painkillers to ease myself to sleep. I weighed about 79 pounds at the time. I was too weak to see my surgeon but luckily in Canada I am blessed with one of the best healthcare systems in the world and he said he'd take me in immediately for emergency surgery.

I was immediately very relieved with my ostomy: the pressure of pooping would often cause my fistula to rip open again and this time I could FEEL it healing. However I was and still am very unprepared. No one gave me any advice on how to deal with this. The first two nights in the hospital the ileostomy would not work properly and my surgeon was very scared and placed me on TPN to keep me alive - I also had an oxygen mask and a constant heart-rate monitor. However after three days I turned the corner and was back on my feet, a miracle of miracles!

Because no one gave me any advice the first night I was home I ate carrots and ended up back in the hospital. I was unaware you can't eat any raw vegetables, particularly with a new ostomy. It was very frustrating for me.

The next two months were filled with on and off blockages that my mother would massage out of my stomach. I could not return to school and I would go to bed crying and wake up in the middle of the night with a blowout. I was not dealing with this well. A huge blockage in October sent me back to the ER and they did a barium swallow.

That was amazing, for some reason! It really opened up my stoma and everything has been working perfectly since. No blockages or anything. I'm very pleased with that and I hope you will all be glad to know that I have since gained over 30 pounds and hope to gain about 20 more. :)

However, the blowouts...

I was good for about three months but lately I've been getting them more and more. The skin around my stoma had healed but now it is raw and irritated. Last night was the last straw. I'm not sure what caused the blowout, but it got EVERYWHERE. All over my shirt, my pants, the bed (thankfully my parents bought a mattress cover), the bathroom carpets, my bedroom carpets, the towels, my feet, just EVERYWHERE. I was sitting there crying when I just got MAD. I was very angry that no one had prepared me for this and that I couldn't turn to anyone for help (I could have woken up my parents but I feel very guilty whenever I do such things so I usually don't). I set out a new comforter, put my dirty clothes in my bathroom sink with some hot water and went to bed.

This morning I've been looking at old threads to figure out some advice but I figure I'd ask for it on my own, too.

How do I deal with blowouts? They only ever, ever happen at night. :( I'm constantly hungry so it is a sincere problem not eating after 6 (after not eating properly for 2 years my body and brain are starved for nutrition. It's so strange that this ostomy has even affected my schoolwork: before I was sick I was a straight A student, then I kept forgetting things, and now I'm back to excellent grades, when they're not affected by doctor's appointments, too).

Any tips for the wafers? Cost is not an issue, both my parents have excellent private insurance that cover ostomy supplies and the Alberta government also covers 75% of your monthly order. I use a cloth flange from Hollister, with an attachable open draining bag, and sometimes Eakin seals (not too often because they are a pain to clean off) and I only wash the skin with Ivory, or sometimes just plain old water.
Posted 2/11/2012 6:33 PM (GMT 0)
Hi Rupindah,
I'm sorry I don't have much information since my daughter is going to be having surgery in the future so I'm just learning as well. However, I'm really surprised you don't have a stoma/WOCN nurse at your hospital. When my daughter was hospitalized last summer (in Toronto) I asked to see a wocn who gave me her card with her direct number on it. She told we could call her directly if we had questions and that if we went through surgery she would have regular follow up in clinic.
I can't believe you were not given diet advice either by a nurse or your surgeon? You need to get in touch with your surgeon or GI and ask for some support ASAP. Also, you can call your local ostomy association and ask for help/support. In Toronto they have a WOCN whose there once a week and she also has information sessions in the community once a week. Do you think you can get help from someone like that?
Anyway, I'm sure others will be here to help you soon.
You have a great attitude for someone so young to have gone through so much. I'm sure you'll be back on your feet soon.
Posted 2/11/2012 6:52 PM (GMT 0)
Thank you so much for responding! I hope that your daughter's surgery goes well and that if she was hospitalized in Sick Kid's, my sister works there. (:

I should clarify that I did, indeed, have an ostomy nurse. However, for my entire city of +1 million people & it's surrounding area, we have a grand total of THREE ostomy nurses. Although mine was very nice and kind, she also had tons to do, and taught me only how to change my bag, nothing else. :(

Yes, no one gave me diet information and I feel that about 6 months later it would be imprudent to go ask for it. I have done a lot of research and have also found an excellent Crohn's/ostomy community on Tumblr (a blog site) which usually I can go to for help. However a lot of the people are young, around my age or within a 5-10 year range, so I just wanted some experienced help. ^_^

I only have 6 months left with my stoma, The Politician (because it's always spewing -- you know! :D) but I just want the 6 months to fly by with ease.

Thank you and I really hope to be back on my feet soon. :)
Posted 2/11/2012 10:08 PM (GMT 0)
Hi and Welcome,

Sorry you were so uninformed. That's terrible.

Few things:

- have you tried using another system other than Hollister? You can call Coloplast and Convatec and get free samples to try their systems.
- do you make sure to wake up in the night to empty? I set my alarm for 3am to empty so that it doesn't overfill
- "Sure Seals" can also help. They add support to keep the bag on, and can help control leaks
- Do you use a skin prep? This can also help the flange to stick better.

I use Hollister as well. When I change, I use an adhesive remover, then 2 coats of the skin prep, the flange and then the bag.

A lot of people like the Coloplast system. I never had any leaks with it, but it irritated my skin.

Good luck - let us know if you have any more questions.
Posted 2/12/2012 1:34 AM (GMT 0)
Welcome, Rupindah. Wow, you've been through a lot. So sorry you have had to go through all of this, and I hope you can get the help you need.

I too was surprised that you didn't have more help from a stoma nurse. You have not had the support that you needed and deserved, that's for sure.

Regarding the blow outs, mom2Panda has some good advice there; I second everything she says.

I'm also wondering if you take anything to slow things down. A lot of folks take immodium so they have less output at night. You might find that eating some thickening foods at night, like marshmallows, bananas, mashed potatoes etc, might help.

You have to be very careful with adhesive remover. If you don't get it all off it will remove the adhesive from your pouch when you put it on. I never use it. If you don't get all the eakin gunk off, it doesn't matter, no harm in leaving some on. I also find that skin prep makes my wafer not stick as well. I use an eakin and that's it, I only use skin prep in small amounts if I have something irritated.

The sure seals are amazing, can't say enough about them (I learned about them here). They are a clear plastic that's like the plastic used to hold an IV down. They keep the wafer waterproof when you shower etc and if you have a leak, they can contain it.

I know that a lot of people here have mentioned having trouble w/Hollister pouches, that they changed them fairly recently. I use coloplast, and they've been great for me. A lot of people swear by convatec. Definitely try some other models, you should be able to get free samples.

Do you have any scar tissue or anything else that's different about some skin under the wafer? That can cause problems. Also, if you have a soft belly (and you don't have to be overweight to have that), it might help to switch to a convex wafer. I started having leaking problems a few months after my surgery, and my nurse fixed them w/a change to the convex (also I hadn't realized that my stoma was oval and I was cutting the wafer wrong).

Is your stoma recessed (short)? A convex wafer can help w/that too. If your stoma isn't sticking out enough then the poop can pancake and cause leaks.

Hope something helps soon. Again, welcome.
Posted 2/12/2012 5:11 AM (GMT 0)
Were you given a book/guide with nutrition/diet info from the hospital to help you with the do's and don'ts. Protein is so important for healing and drinking lots of water to stay hydrated. It is normal to continue using the wafer/pouch that the hospital might have started you on. But it might help to call the big 3 companies to get some different samples to try in case you find something you like better than your current one.

The blow out situation has only happened once and close to one the other day for my husband. Both times we have pinpointed it to an overabundance of foods that thicken output and we are thinking it is getting somewhat backed up and can't discharge properly if that makes sense. So I wonder if your food intake definitely needs some changing around and plenty of water or fruit juice to thin things out a bit??? Of course you need to chew, chew, chew and eat slowly.

When you go to bed can you put a plastic bag or produce bag tucked in and around your pouch so if it starts leaking it won't go over the bed linens?

Definitely set the alarm as suggested to get up and empty the bag to keep ahead of it. Not easy to have broken sleep I know but this would be better than having a clean up to do.

Fortunately you have only 6 more months but you certainly want to be able to manage it and not have to worry so much with the uncertainty you have been dealing with.

Have a pen and paper handy and read the different threads and you will find a hint here and there. Jot them down as you won't remember them all. Some advice were paragraphs here and there that I would copy and paste and put in a word document for reference. Especially in the beginning when I was overwhelmed with advice and hints to share with my husband in the early days after his surgery. You will be surprised at the info that is spread throughout this forum in various threads that will be of help for you. Good luck.
Posted 2/12/2012 4:49 PM (GMT 0)
I believe you said that you were using Ivory soap.  Try Dial.
Posted 2/12/2012 5:20 PM (GMT 0)

One thing I found to be very important in getting my appliances to stick well has been the use of heat and pressure.   I use my hairdryer on low to make sure my skin is dry, first.  Then, I use it to dry the skin prep, heat the eakin, heat the wafer and then hold it down for with my hands for a minute or so.  I then apply heat all around the wafer once my wafer has been applied. I keep alternating the hairdryer and pressure for 3-5 minutes, or so.   Just being very careful not to apply direct heat to my stoma at all times, shielding it with my free hand.

I have read other posts about putting the Eakin and wafer in ones bra to heat them prior to a change.  And, I also read that one gal said she uses a heating pad over the whole area for 5-10 mins once she changes appliances.

In the beginning at night, I would use the belt and place 2 full sized super women's Stay-Free pads on both sides of my stoma in the event of leaks.  The belt held them down and then my underwear held them, too. It only helps contain the mess, not stopping the leak.  Sure Seals are wonderful for containing leaks, as well.

Another UC Wife did exactly what I did.  I kept a document titled "Bag Tips" on my desktop and kept cutting-and-pasting and adding every little tidbit of information I could find from "Soup to Tic Tacs".

With the help of all the super people here, you will get through the next few months in your journey :-)

Posted 2/12/2012 6:42 PM (GMT 0)
ps -- LOVE your stoma name! Forgot to mention that....
Posted 2/13/2012 8:07 AM (GMT 0)
rupindah:

Sorry to hear about your trials.....

First, how can you get in contact with a good WOCN (ostomy/wound nurse)? YOu need to find one just as soon as you can...this forum helped me a lot..but, when I finally got to a REAL WOCN (a few weeks after ostomy surgery), laying back on the table and having her remove my wafter and look at my skin/stoma, made me feel so much better!

Second, as far as what you can do, what type of system do you use ? one/two piece? what type of wafer? Does your stoma stick out, or is it like an "inny?"

Do you wash around stoma skin w/soap and rinse with water and dry before putting on new wafter? do you use skin prep? do you use an eakin seal? does your pouch have gas filters or no filters at all? Puches w/no filter scare me..as regardless of manufacturer, a bag full of "air" is much easier to pop than a bag that is just full of "poo" (or, as I call it..intestinal sludge..lol).

I know lots of questions, but after awhile this will become second hand to ya! All of us illeosomates have a special challenge of keeping skin taken care of..unlike colostomates or uostomates...us with illeo's need to stay on top of the skin...if that is okay, everything is okay.

Sorry..just re-read your post....you said you use Ivory soap??? That has moisturizers..not good! you need to find soap (or liquid soap) that has no moisturizers..w/moisturizers things don't stick as well..will slide right off..lol

Please keep us posted...
your on-line friends...
jimmy

Post Edited (ENIGMAWRAP) : 2/13/2012 1:10:24 AM (GMT-7)

Posted 2/13/2012 11:33 PM (GMT 0)
Thank you guys so much! It means a lot that you all took your time to respond. I'm going to bold each of your usernames in this reply because I have a feeling it will be a long one.

mom2panda

- I have tried other systems but I dislike the plastic of the Coloplast wafers. I'm very active and social and because I'm eating so much my stomach is constantly changing shape (bloating, then going flat again, then bloating again). The cloth flanges seem to work best to contain that.

- I do wake up at night to empty but I figured that I may have been becoming desensitized to my alarm system so I changed the ringtone and differed the time by about ten minutes so that I would wake up again. I hadn't been waking up the past few nights which may have been part of the problem.

- I'm definitely going to try Sure Seal! :)

- I didn't use any skin prep because I was unsure of what products to use. If you all have any recommendations I'd be so glad to have them. :)

blueglass

I'm going to try the Immodium, but do the marshmallows block things? Or do they just slow things down? As for bananas, I have Oral Allergy Syndrome, so bananas are a no-go. :(

I have no scar tissue, and like I had said, my skin was perfectly healed until the wafer began to leak again and now it's irritated once more. I hope that'll go away soon.

Once again, I demonstrate my lack of knowledge with these things. What is the difference between convex and concave wafers? I don't know which one I use. But my stoma is short and by reading through this forum I found out sleeping on your bag is a bad idea with a short wafer as they tend to go down and leak things out under the flange. Already learning tips! I thought sleeping on your bag was the best idea but now I sleep on my sides. :)

Also, thanks! I love my stoma name too :P

Another UC wife

No, I wasn't given anything like that. I was told to drink a lot of water by my nurse but that doesn't seem to be doing good because then I get a ton of gas, so I'm cutting down on that. The hospital started me on Coloplast but those were not working so I called them and they authorized me for Hollister pouches, which I chose after calling the companies and trying theirs. The best one, actually, was the Flex system by Coloplast but my local surgical supply store doesn't carry those.

I guess I need to chew a bit slower, because eating fast is just a habit that I can't seem to break! Will definitely work on that.

This forum is already proving to be a godsend. Once again, thank you all so so much. My gratitude is infinite.

Tom1

I will, thank you!

ChronieCJ

So the heat doesn't dry out the sticky bit of the wafer? I'm going to try that next time and see if there's a difference. I used a timer yesterday and spend a minute on each section pushing it down so hopefully it will stay.

I have a loop ileostomy so it's too high up for my underwear to reach, which is also a problem with clothing, but I've been working around that.

I may get a heating pad, that sounds like a great idea! Especially because it's so cold here right now, brrr. :)

ENIGMAWRAP

I'm not sure. My older sister is a nurse but she's not much help and she lives too far away. I have a Homecare specialist who checks on me once a week at my house to look at my abscess, I might check to see if they have a special Ostomate one, or at least a private ostomy nurse because I can't be the only one having troubles in this city!

I use a two piece Hollister system but that's as far as my knowledge goes. And my stoma sticks out. It moves sometimes. Which is funny to me. :P

I sort of take a bit of the soap from the bar on my fingers and gently rub around the stoma area to clean it off. I don't use a skin prep, and I do use Eakin seals. But my pouch does not have a gas filter. I used the pouches with gas filters and they began to leak and such, so I switched. :(

Oooh. The lady from Hollister who I phoned about free samples told me Ivory soap was the best to use but I will definitely try Dial.

Once again, thank you all for your help and I will definitely take your advice and tell you how things go!
Posted 2/14/2012 12:11 AM (GMT 0)
Rupindah, So glad you're getting help here.

A few follow ups:

There is no "concave" wafer that I've heard of -- it's flat or convex (if you look at the other side of a convex, I guess that would be concave). The convex is kind of bowl-shaped and it pushes your stoma out some. It's also often firmer than the flat wafers (at least w/the coloplast, which I use) and that part works better for some people. If your stomach is moving around a lot, a convex might help.

There are also some convex things that people put under the wafers. I am not that familiar w/them, but others here have used them.

The marshmallows might not be a good idea if you're having trouble w/output being too thick. They don't block things, just slow them down, but that also tends to thicken output (the gelatin, probably). They're great for when you change your pouch, can help prevent "surprises."

Definitely ask for a stoma nurse. They know so much more than the regular visiting nurses. Can your parents help advocate for you w/the agency? You are not getting proper follow-up care if you're not getting a WOCN. They might have more success if you don't.

If you have trouble w/immodium, be sure to start another thread about it here or search for the old ones. The people who use it most successfully have a regular schedule. I think it's a half hour before eating and right before bed, but I'm not sure, you should check. Timing matters w/it.

Also, I don't use soap specifically around the stoma. I take a shower w/the bag off when I'm changing, and some suds fall down on it, but mostly I just rinse with water. I doubt that dial vs ivory would make a huge difference, but you could try -- they're both mild.

Keep us posted.
Posted 2/14/2012 12:40 AM (GMT 0)
I'm so sorry about your ordeal. You sound so brave, I do wish you nothing but the best! But you have to overcome this and we're here to help. I too had so, soooo little help from the WOCN from the hospital and from the home health agency. I didn't know about raw veggies, obstructions, different appliances, convexity, absolutely nothing. What I came home with from the hospital was a convex wafer for urstomies....because that is all the hospital had and the home health WOCN didn't see me for 6 days. The home health nurse only took care and advised me on my abdominal open wound. I woke up with an ileostomy, so I had no clue. Everything I did was wrong.

Everything I learned, I learned on here. When the WOCN did see me, she ordered a moldable, convex wafer from Convetec. It did the trick. But 4 months later, I too gained my weight back and leaks started and the wear time went drastically downhill. I switched from the stomapaste to the Eakins, along with using an ostomy belt. I don't even know I'm wearing it. I learned all my tips from ChronieCJ (I wrote everything in a journal) and the heat did the trick. I get between 7-11 days. I sometimes use the sure seals, were great when catching a leak and for swimming.

No, the heat doesn't dry out the sticky part of the wafer. I make sure I remove all of the Eakin, I'm really gentle, I do use the adhesive remover and I wash and wash endlessly with dial. I use 2 coats of the prep, stomapaste to fill in either side of my stoma as I have dips from weight gain and the abdominal incision scar, heat the eakin, put in on, use the paper it came with to push and form around my stoma, heat the wafer and put in on. I place fingers around the moldable part for 1-2 minutes pressing and I'm still under the dryer. Then I snap on my bag and hand press 10-15 minutes.

Hope it goes well, journal everything, and it's unfortunately all trial and error, but we are here to help!!! Ask for samples, hints from the WOCN's that the manufactures have.
Posted 2/15/2012 7:21 AM (GMT 0)
hey i just turned 18 and i have been on this website since october and i tell EVERYTHIG thats on my mind good or bad we are all accepting! if you go to my home page or whatever you ca look at my threads and i have a website called. www.myostomyconfidence.com .... also its all normal i started having panic attacks and i thought they were never reall but they are. journaling like other people say is great i have a journal from the night before surgery october 10 till now and i write on here a lot! maybe support groups are available there non where i live!!! supplies for your stoma for me hollister worked but i hated it now that its been removed i think i just hated havig the bag !!!! write here anytime/ all the time :) AND WELCOME
Posted 2/15/2012 4:26 PM (GMT 0)
I don't have any additional advice to add (what others have posted above is really good!) but I wanted to say for a such a young person you are very articulate. :-). I hope you get all of these issues resolved so that you can get back to living your life ASAP.
Posted 2/15/2012 10:07 PM (GMT 0)
Thank you windy city, Jackie_0mg, and run4pancakes. I really appreciate everything. run4pancakes: I very much love to write so that compliment means quite a lot. :)

I took everyone's advice and tried out the heat thing last night. I thought it worked fine but today at school I had a blowout. Luckily I have a very trusted friend who helped me with everything and I was wearing a wrap that contained the leak, and my mother was working from home so I was able to get home fast. But it was mortifying and very upsetting.

I hope you don't mind if I vent a little:

I'm just very tired of dealing with these things, because for three years I dealt with constant fatigue and the inability to enjoy myself and now that I have so much more energy I can't harness it and enjoy myself. I know that I should be grateful that it will be reversed in July but I am so truly scared that my energy will also be reversed and I will go back to being my drowsy, lazy, depressed self that I had been before this ostomy surgery. I hate how this bag is making me feel: I used to be quite the self-confident girl, who really loved who she was, and although I still love who I am I hate how I look with this bag and how it makes me feel. I'm not used to having to dress carefully to cover the bag and I'm not used to this anxiety. I don't want this anymore, but I guess I have to stick it out.

But I am very angry that my hospital did not prepare me for this. I'm going to call my surgical supply store and order Sure Seals, and if they don't have them, then I'll go through a private store to get them if I have to. This is not what I wanted from my life and I'm a very social, active person with many friends who now has to sit at home or contain her emotions because laughing too hard rips the bag.

It's all very petty, I know, but it's the most frustrating thing in the world and I have no one to talk to about it, except for on here. Thank you all for reading/listening.
Posted 2/15/2012 10:31 PM (GMT 0)
It's fine to vent, we all need to do it. And no need to call your feelings petty or say you should be grateful. I'm sure you are grateful, but that doesn't mean you have to be happy every minute. It's a very big deal, especially for someone your age, to have to go through all of this.

And an accident at school is awful -- I bet if you polled some of the healthy kids they'd think it was one of the worst things in the world. It isn't, but it's not something that leaves any of us just feeling happy and grateful afterward.

It's also very normal to be nervous about the next surgery, especially if you're going into it feeling healthy and energetic. You will feel worse right after surgery, that's just a fact, and that's hard to do voluntarily when you've been sick so much.

As for self-confidence, it's not necessarily something steady that you have or you don't. I bet when things settle down you'll be even more confident because you'll look back and see what you were able to get through.

Maybe you could channel some of your anger and energy into trying to help make the hospital better for people who come after you.... just a thought. I was very angry about something that happened to me and shouldn't have, and I called the patient advocacy dept, and I ended up feeling quite good about doing that.

And you really need a nurse to help you w/your problem. We can offer suggestions, but a good stoma nurse will be able to look at you in person and see the big picture of what might be going wrong. Any progress on that front.

Awesome that you had a friend help you out. That is wonderful.

Hang in. Vent more if you want to.
Posted 2/15/2012 10:40 PM (GMT 0)
You've had to endure things that you should never have to at your age. Is it OK if I give you a cyber ((((HUG))))))))......there-do you feel better? I hope so. :-)

I said the same thing to myself when I read your original post...wow what an extremely articulate young lady! Your words speak volumes at to your tenacity, disposition and your strength. Lean on your friends for support, and please laugh when able!

We've all with our ostomy's, had such horrific blow out's. They are hard to conceptualize. They also make me frustrated. But you have to try to push through. Don't let this define you.....you stated you still love who you are, don't lose that! You have a whole wonderful life ahead of you. You will get through this. Don't worry and be scared about the reversal, you will have a life so full of happiness and it will be at your feet!!!!!

Convex wafers saved me, also moldable, so I wouldn't make the error of cutting too big or small. I use dial to clean everything off. I'm very patient and gentle. I even massage my skin and sing so I don't lose my mind, as I hate looking at my stoma. It takes forever but I want to make sure it's super clean, all adhesive remover is off and it's dry. I use Eakin even though their messy, again I clean well. When I gained the weight back and having leaks after 4 days (I was getting a week prior and didn't want less, even though I shouldn't complain about 4), I used an ostomy belt from convatec. It's thin and soft, can wear jeans whether skinny or boot cut, leggings, dress even if very form fitting. Over the summer I was in a beach volleyball team in a 2 piece bathing suit, couldn't see my appliance, nor the belt. It keeps the appliance pushing closely to the abdomen. Immediately got 11 days, summer because of exercise and heat, I get 7. Worth a try if you haven't already.

Vent whenever your want!!! Hope it made you feel better, that's what we're here for!
Posted 2/16/2012 1:34 AM (GMT 0)
You've got to figure out how to get a consultation with an ostomy nurse. Ask your parents to help you. You shouldn't be having that many pouch failures in such a short time. Laughing shouldn't be a reason to lose your seal. Heck, I ran hundreds of miles in the heat of summer with mine and never had an issue while working out. It sounds to me like you are in the wrong appliance and a change is needed. That is something that is going to be difficult for us to troubleshoot for you here online. If you absolutely can't get to a stoma nurse, then please look up and call several of the manufacturers and ask about samples. Many of them have ostomy nurses on staff that can try to troubleshoot things over the phone and they will send you things to try. I don't know what you are using now, but you can check out Hollister, Convatech, Coloplast, and Marlen. Those are the ones I am familiar with.

Don't think you have to accept this for the next six months! It's not the way it's supposed to work and you have to keep trying until you figure out what combination of products is right for you, your stoma, and your body. Don't let this take over your life. You fight back! No matter how bad you feel right now, you are the same confident, strong, smart, resilient person inside. You can do this.
Posted 2/16/2012 2:10 AM (GMT 0)
i have to hand it to the females on here with consideration to clothing.........i have image issues with worrying about it being inadvertently exposed, or having a loud gas noise, or the bag puffing up and being noticeable....and because of it, i weary hoodys every day (luckily i have quite a few).....and as a male, i can "get away" with wearing baggier clothing...........ive never had a blowout and absolutely DREAD it, if it were to happen, so i applaud you. youve got to be able to get a wocn that can figure it out for you....it simply shouldnt happen that often if you ask me.......especially since these supplies are so expensive!!! i mean at full price without insurance i beleive it averages to like 10 dollars per stupid plastic bag with sticky crap on it!! i could be off on the price, but you get my point.
Posted 2/16/2012 5:55 PM (GMT 0)

Roni-Ro said...
i have to hand it to the females on here with consideration to clothing.........i have image issues with worrying about it being inadvertently exposed, or having a loud gas noise, or the bag puffing up and being noticeable....and because of it, i weary hoodys every day (luckily i have quite a few).....and as a male, i can "get away" with wearing baggier clothing...........ive never had a blowout and absolutely DREAD it, if it were to happen, so i applaud you. youve got to be able to get a wocn that can figure it out for you....it simply shouldnt happen that often if you ask me.......especially since these supplies are so expensive!!! i mean at full price without insurance i beleive it averages to like 10 dollars per stupid plastic bag with sticky crap on it!! i could be off on the price, but you get my point.

 

wow you didn't last long with UC, dec 2010 and removal of colon sept 2011....

Posted 2/19/2012 4:27 AM (GMT 0)
Hello, everyone! An update!

I leaked again which was dumb. But this time it really pushed me to change things, and your advice did too. I know I shouldn't resign myself to living like this and therefore I went into action.

I called ConvaTec and they're sending me convex wafer samples. The man on the phone gave me the number for the company who made Sure Seals, but the number redirected me to their website. I admit I got confused because I thought it was altglobal instead of alpglobal and I got some funny construction website! :P

But I requested a sample.

Yesterday I found a tiny hairdryer in the house, propped my wafer and Eakin seal against my headboard and let the dryer run on them while I went to go take a shower. I shower incredibly fast but it did help quite a bit! I felt them stick immediately and the Eakin seal was so much more moldable.

I'm just wondering if my skin is getting used to the Hollister wafer and therefore is able to throw it off now, so I may switch them up with ConvaTec ones, and of course, Sure Seals. :)

I want to thank you all again so much for your help!

I talked to my mother about the WOCN nurse situation, though, and I don't know if we can get anyone. I'll definitely have to ask around. The nurses at my hospital are very familiar with my surgeon (who, I can't help bragging, apparently makes the best ostomies in all of western Canada) and that's why we stick with them, but there has to be someone else out there.

Once again, thank you so much!

I wish you all the best of luck and of course, excellent health.
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