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Jer's Girl

Jer's Girl

Joined
Oct 11, 2009
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I have noticed that several people on this site have been getting and dealing with ostomy surgery lately. I would like this thread to be a place where those of us with ostomys can share our stories, our tips and our questions with each other. I’ll go first!

I have told my surgery story. Now I wanted to write about how I feel about having an ostomy. Growing up with Crohn’s, my biggest fear was always that I would someday end up with a bag. Now, having gone through it, I consider it to be one of the best decisions I have ever made (second only to my choosing my fiancé). I hope that others who have had ostomys performed can relate to what I have gone through, and am still going through. I also hope that those of you who are looking at possible ostomy surgery in the future can get some comfort from my words. There were several people who helped me by sharing their stories before I got my surgery and I can’t tell you how much it helped me. Thank you all for your support and your help in making this life changing decision.

To any stranger on the street, I look like any other 27 year old woman. I am thin, average height, dress stylishly (if I do say so myself), and although I won’t claim to be a great beauty, I’m generally pretty happy with the way that I look. No one would ever suspect that under my clothes I have a bag attached to my stomach that collects my waste. No one would ever know that I have had an Iliostomy unless I told them.

Yes, I have to go to the bathroom and change it several times a day which can be time consuming, but before my ostomy I went to the bathroom that often on a good day, and on a bad one I was in the bathroom even more, sometimes for 20 minutes or longer. Sometimes I couldn’t even leave the house. I was also in crippling pain then.

With my ostomy, I can now eat just about anything without pain. For someone who knows what it is like to have pain from drinking broth, this is simply amazing. Food has become fun again.

During the night before my surgery, I would wake up several times to use the bathroom, or simply from pain. Now I only have to wake up once, if at all, to change my bag. It annoys me to have to do it, but that just show how spoiled I have gotten.

The thing I was most worried about before my surgery was how it was going to affect my relationship with my fiancé. It hasn’t affected how he sees me at all, and if anything he is happier because I am feeling so much better. I know it sounds crazy, but our sex life has only improved! It feels wonderful to not have the horrible feeling that you might have to go to the bathroom during, or to simply be too sick or too tired to even want to think about being intimate.

I can also wear completely normal clothes, including skinny jeans. I don’t wear tight t-shirts or tank tops too often anymore because a little bit of the bags outline can be seen in them, but I am getting braver all of the time, and honestly, even in a tight top, it is hardly noticeable. Right after surgery however, the only thing I could wear was sweats because my tummy was swollen and I was just getting used to the bag. If this happens to you, don’t worry. You will be back in normal clothes again soon.

I still have trouble from time to time. There are still things that I am getting used to. If I could have a normal life without the stoma, believe me I would, and I am not suggesting that ostomy surgery is right for everyone. All I can tell you is that for me, it has been a wonderful decision that I do not regret for one moment. It has allowed me to work, eat, have fun and simply live again nearly pain free. The point is that with this bag, I can appear to be a normal girl because I am aloud to have a more normal life. My day to day life has improved immeasurably.

*I have focused a lot on looks in this post because body image is the one area that could have been most negatively affected by this life change. When I first woke up from surgery, it was very hard for me to see the bag hanging there, and it is still a little hard for me to look at the naked stoma, although the size and shape of it have improved a great deal in the last few months. Other things that I worry about are damaging the bag by going swimming or getting too hot working out. These are challenges, but if I am honest with myself, I remember that before my ostomy, activities like this were next to impossible because my disease was so rampant. I do have down days, and I do have hard times, but I am always so glad that I made this decision because it truly has given me my life back.

Question: How do you get your bags to stick for longer? I use a one piece, and they start to peel off after only one to two days.

Tip: My biggest tip is to go to Ostomyshop.com. I have purchased every female product from them and have been very happy with them. The classic wrap is awesome if you don’t have a lot of money to spend or if your ostomy is new because you can re-use it without washing it for days and days and it stays pretty well hidden under your clothes. I am wearing the classic girls undies right now and I love love love them. The Sexy thong is also nice. My least favorite is the sexy panty, but that is mostly because I find the band to be too tight, so maybe if I went up a size.
 
Fantastic idea for a thread! I'm not going to repeat my story (I'm sure everyone's sick of hearing it! lol). But, like you, it's the best thing that's happened to me in a very long time.

I'm not sure how you get your bags to stick for longer. I use the Coloplast SenSura and my flange has been on as long as 10 days with no problems at all (they're kind of plasticy and when you get it wet, just use the warm setting on the blowdryer and dry it and it's fine).

I just got an email from Ostomyshop that my stuff is on the way! I got the wrap and the sexy thong. I'll post here how I like them :)

Glad to hear you're doing so well Jer's Girl :)
 
Thanks for the advice Nyx! As I have said before, you were one of the main people who helped me through the tough decision to get my surgery. You helped me so much!

I just got all of my undies in the mail, and like I said, I really like them. I hope they work for you. No panty or bag lines again is great!
 
This is an awesome thread. Nyx, I'm going to have to call coloplast to try those out.

I'll write a brief on my past week with an ileostomy.

Before I had my ileostomy I constantly felt like I had to go to the bathroom, I spent 7 years in the same state. It made playing sports and doing all the exercise I wanted to do extremely difficult and I got so depressed that I had to tell my friends I need to go home to go to the bathroom. I lost one friend that way. Since I've had this ileostomy I don't have the sensation of having to constantly go to the bathroom anymore. It's seriously amazing. I love the feeling of just being able to empty the bag although it smells worse now I think then it did before. I'll update how my story is in a few months as I start exercising.

Jer's Girl: How is the wrap during exercise? I was afraid to get it only for the reason that I'm worried how it will hold up to exercise, especially running. Thanks

I also wanted to thank Kello without whom I would never have had the guts to get an ostomy. Nyx, Jer's Girl, CDDad, Merrywidow, and I'm probably forgetting a few who have helped in the past several weeks in preperation for op and post op. You guys have helped me out so much I am forever greatful.
 
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I was thinking it might be nice to have a new top level Discussion forum for Ostomy. You know, on the main forum page. Any administrator reading?

Here are my thoughts on my ostomy; 7 weeks post surgery today. I am about 50/50 on liking this thing. Here is the good:

No more urgency to use the bathroom - my biggest problem before
No more accidents when I could not get there
Able to go anywhere now without worrying about bathrooms
Slept through the night last night
No worries about colon cancer anymore
No more colonoscopy and preps for me

The bad:
Of course, body image with the ostomy
The weight of a bag that needs to be emptied.
A leak in a pouch at work or any place other than home
Just being different than the original plumbing design

As I get more used to the ostomy, I'm moving more to 55/45. I think one day I'll be firmly in the "love it" camp.

And from me - a big thank you to Nyx too. Your great additude and advice have made this whole process easier. When I'm feeling sorry for myself, I think about your positive spirit. You're helping alot of people!

Jer's Girl - have you tried a barrier ring like Hollister Adapt ring, or Eakin? They are so sticky and can increase wear time. From what I have read, some people use them, some don't, just a preference.
 
Thanks guys! It's good to know that my experience and advice has helped others :) You made my day!!!
 
Right after I wrote this uplifting post, my bag leaked badly for the first time. I have had a couple of small leaks from the filter on my bag, but this was the first time my bag really leaked all over my clothes from the seal. And on my third day back to work after surgery too! I took care of it as best as I could and went home. I didn't let it get me too down though. My guy has been helping me look for new bags on-line so I will let you all know if these new ones work better.

Just another day as a Crohnie! Always a new adventure.
 
Tomorrow I'm trying a bag that I added a button to with a hole in the bag. It should be better then the filtered ones since it can get wet but you do have to release the button to release gas. I'm hoping this works well for me. I'll post how I like it after a few days.
 
Please let us know how those work...I've seen them online and was wondering about them as I get alot of gas and need something better than the bags I have now (they work ok, but not if I have alot of gas at once).
 
So it's been a day since putting using the little button flatulence release and I can say it's probably not worth it. It was totally awesome last night and even this morning but something happened at one point in the day where the stool rolled to the top of my bag and now it's clogged up so I need to use a toothpick to open it. It's nice because it's super easy to use but once it gets poop on it and in it the thing becomes useless. Seriously no air even passes now. I also had to wash my hand a few times as a few stray poop particles flew off of the button piece and landed on my hand, that was kind of gross and it really sucked when it happened when I woke up for a few minutes around 9:30 and because I had to get up and wash my hands I woke up and couldn't get back to sleep. I only slept 4 hours last night...ugh

Question: How much TP do you guys use when emptying your pouch out. Nyx I know you change pouches every time but for those who don't and just clean out the end how much TP do ya'll use. Nyx what do you use to clean off the flange when you change pouches and if you use TP how much do you use, I guess that's to anyone who rinses out there bag.

Question 2: I don't have a problem with splashing like some do but my stool seems so thick that it grip the toilet bowl and I end up pretty much having to clean my toilet everytime I empty the bag adding extra time. I had friends over tonight and I really needed to empty the bag but I didn't want to dirty the bathroom nor take the time to clean it while they were here. What do ya'll do? I empty while sitting on the toilet so it gets stuck to the bowl right where the water ends. Is there a better way without kneeling on the floor because I can't do that right now.

Thanks for the help and I hope I helped ya'll with an opinion on the button.
 
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Hi Jeff, I hope you don't mind me posting here as I don't have an ostomy, but I do have an idea for dealing with sticky poo- have you tried lining the bowl where it hits with a few pieces of tp?
 
I'm with Rebecca here...I always put 2 or 3 squares of tp down in the toilet before I empty my bag (if I'm just emptying it, not changing it). It absorbs the poop, and it doesn't stick to the sides of the bowl at all.

In regards to tp usage....it really depends on the day. Some days I have super hard poop and I only use 2 squares of tp to clean up. Other days, I have 'sticky poo' and it takes upwards of 10 squares to get everything cleaned to my satisfaction. On average, I'd say I use about 5 squares to get Oscar looking spiffy (plus 2 Q-Tips around the flange). Sometimes too...if things have been overly active, I wet a facecloth and give Oscar a wee sponge bath. Only takes a minute, and I feel much better :)
 
Thanks Cindy, that helps a bunch. I've got the sticky poops. It's really amusing me because I feel like I'm squeezing icing out of my bag sometimes.lol
 
Jeff, ileostomy patients tend to have runnier poo than colostomy patients, but I think it is a good sign if yours are more solid. I always put down TP in the toilet before I drain it so that the bowl stays cleaner (I have had that front of the bowl problem too) and it also helps with splash back. Then I tear off six pieces of TP (about two squares each) to clean my bag after. I use between four to six of them. It helps to have them ready before you start squeezing. Then I use a baby whip for my last wipe, not every time, but if it needs a little extra.

Cindy, I've noticed that you have mentioned that Oscar is bigger than Jeff's or Kello's in a few different threads. I think that is because you had a colostomy and we had ileostomy, so the healthy part of your intestine sticking out is your large intestine and the healthy part of ours is our small intestine. Also, mine is named Oliver Stoma. We started calling it that in the hospital. :)
 
Thanks Nicole, I think I'll do that next time I need to empty it.

I think you are right, the colon is a little larger in girth than the ileum so it makes sense to have a larger stoma for colonoscopy patients.
 
Thanks Nicole....I never thought about the size difference between the large and small intestine...duh! And I love your stoma's name! Very cute :)
 
I just thought of the stoma size thing last night. I felt like a genius for figuring it out LOL. It doesn't take much to please me. :)
 
Jeff D. said:
.

Question 2: I don't have a problem with splashing like some do but my stool seems so thick that it grip the toilet bowl and I end up pretty much having to clean my toilet everytime I empty the bag adding extra time. I had friends over tonight and I really needed to empty the bag but I didn't want to dirty the bathroom nor take the time to clean it while they were here. What do ya'll do? I empty while sitting on the toilet so it gets stuck to the bowl right where the water ends. Is there a better way without kneeling on the floor because I can't do that right now.
.
Click to expand...

i have never knelt on the floor to empty my bag, i sit on the toilet spread my legs a little and empty the bag through the gap.
 
I saw a web site where the ostomy bag was attacked to a disposable bag and flushed down the toilet.
 
acg101 said:
I saw a web site where the ostomy bag was attacked to a disposable bag and flushed down the toilet.
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attacked? or maybe attached.


def dont put them down the toilet, they bags dont breakdown and will block up the sewer.
 
I've seen those here, but they're soooo expensive. They also have liners that go inside the regular bags, but again, very expensive.
 
You're so lucky Sharon!!! I wish our stuff was free. I'd have the best bags in town :) Or do they have a specific brand or style they only give you for free? Or can you pick whatever you want?
 
for the sticky output problem when emptying into the toilet, try keeping a bottle of baby oil in the bathroom and pouring a little inside the bowl, on the area where you empty onto, before emptying..

don't even contemplate the kneeling on the floor way of doing it - well that's my advice anyway - my very first stoma nurse insisted this was the way it should be done, but i completely ignored her from the start, and i do it the way Sharon does. can you imagine kneeling on a public toilet floor??? yuk!

re how much loo paper to clean inside the drainable end.. i only use 2 sheets, together and folded again and again so it's like a fat pipe cleaner.


i'm still in the process of trying different appliances.. i didn't like the ones given to me by the stoma nurses, they seemed to resolve one issue but cause others... last weekend i attended a manufacturers open day, and i'm trying an amazing bag by Oakmed, it has Microskin adhesive, you know the stuff that is used in hospitals to anchor down cannulas... it's like a second skin, transparent, thin, & adheres to every crease in your own skin.. these bags are something else in stoma care, in all the years i've had my stoma (over 20) i've never worn something so light and comfortable, and the adhesion is really good. there's no hard flange or inflexible materials on them at all... the one i'm using right now is MV4120K, on this page... https://www.oakmed.co.uk/os/ileostomy.asp#thumb

it's only my 2nd day with it, so i'm still not sure if it's going to be the one, but so far so good.
 
The samples aren't free. They're $15 but you get 50 liners. I just called them....lol. They're more for colostomies than ileostomies though. The woman on the phone said that liquidish poop might leak. So, they would work for me :)

I'll try them out and let everyone know how they work.
 
I have a question. Has anyone heard of a person with Crohn’s having success after a reversal surgery? My Dr thinks that I might be able to get one in four to six months if my health continues to improve the way it has.

My second question is, if I have the reversal and five ten years from now I need to get the iliostomy put back in, can they do it in about the same spot, or is there too much scar tissue?

I am pretty happy with things the way that they are and if this has to be permanent then I am okay with that. Just wanted to know if I should be considering it at all.
 
I'd say that if it's possible to have it reversed, I'd do it. In my case, there's no possibility of that so haven't given it much thought. I would think that if the rest of your system isn't affected by the Crohn's, then go for it! As to possible stoma replacement if need be, I think they can put in the same spot. I suppose it would depend on how you heal after the resection. Not sure though...

Wow, I'm so helpful.....lol Sorry!!
 
I spend the past two weeks meeting with doctors asking the question about chrohn's reversal.
I have chrohn's colitis and the answer for me was NO! because A. there is very very high likelyhood for the chroh'n to return and B. once they did the Jpouch and used some lenght of your small intestine and C. very likely that your quality of life will be diminished compare to the ostomy.
Like as Nyx said, I see it as not having a choice and going for the total procto collectomy and having a permanent ostomy
Best wished
 
So I just got my stuff from ostomyshop.com. I love the thong! Gotta say though, that I don't like the wrap very much! I'll wear it under dresses but that's about it. I think my stoma's in a weird place, because the bottom of the wrap keeps rolling up. Or maybe I'm just too curvy to use something like that. It also leaves a visible line across the middle of my butt (not very attractive). I think I'm going to stick with my spandex shorts for everyday wear under jeans and pants. I guess it's all about trial and error :)
 
Ok, I thought I'd add my input since it has been 5 weeks since my first surgery for my jpouch.

I feel great, this is the greatest thing I could have done. I will be getting my reversal/takedown in the end of July or so. We'll have to see how it goes. My pathology report of my colon and rectum showed colitis, they didn't say if it was Crohn's or UC.

Other than that, I was having a hell of a time with bags only lasting a day or two before they leaked, they were Hollister cut-to-size one pieces. I was able to meet with my ostomy nurse and I now use Covatec pre-sized one piece bags and I haven't had a problem since. I change them after 5 days, and now she says I can go 7. She told me that Convatec uses different flange adhesive that doesn't break down with the stomach enzymes like other brands.

I feel better than I did before surgery! I can pretty much do anything without worrying. My diet is pretty much anything, but I do stay away from hard to digest stuff and things that can cause a blockage. I empty it often and night time can be annoying because I wake up every 3 hours to empty it, like clock work.

As far as how I empty it, I make 2 rolls of TP and each roll has 2 squares in it. After I empty it I take 2-3 connected squares and shove it in the opening to do the initial wipe. Then I use each roll to do fine cleaning of the opening, finally I put the clip back on. I do this on the toilet.

Clothing was my main problem. The way my stoma is positioned is right on my beltline. So now I use men's bikini briefs that come up below the seal and wear pants above the seal using suspenders.

One of my problems I deal with though is mucus out my butt. I empty mucus every time I pee, which is often. Sometimes my butt leaks it at night, which is annoying. They said it will take a couple months for it too calm down.

Another thing I am not sure about is the consistency of my poo in the bag. When I wake up in the morning it is very watery but after I eat and throughout the day it is thin to thick. Is this normal? I figure it is watery in the morning because there is no food in my system so its just bile and other digestive aiding fluids.

Good luck everyone!
 
In regards to your output Joey...I'd think that was pretty normal. I don't have liquidy stools, but I do find that the consistency of mine does change depending on what I eat and what time of day that I eat. I eat cheese and I have poops like bullets! lol I wouldn't worry too much about it, as long as you're having output, I'd think that was a good thing.

Thanks for the update...glad you're doing well :)
 
hey Joey, it is so great to hear that you are doing so much better.
I have a surgery date for July 9th and remember the days before you had your surgery.
I need a tptal proctocollectomy, because they figured out I have Crohn's and strongly advised me against reversal due to possible complications.
Po op , I am concerned about having to empty the bag during the night because I have such a hard time falling to sleep. I wish I could find a 'night over sized bag"...
Is your pain all gone?
best wishes
 
Hey acg,
Ya my pain is mostly gone. I can do almost everything I did before surgery(no motocross yet). I still have pain if I sneeze or cough, which is really annoying. It's a sharp pain in my abs and goes away in a few minutes. It's amazing how much you use you stomach muscles.

Not being able to sleep through the night is tough. I have no problem falling asleep, I'm usually out within 5 minutes. I use to set my alarm to wake me up at 3am so I can empty the bag, then I automatically wake up at 6am and figure I might as well empty it again. Now I automatically wake up without my alarm. It's not too bad though, because I take care of it in a few minutes and then go back to bed. One thing I do notice is I have many dreams in one night since it changes every time I wake up. I do however miss sleeping on my stomach and look forward to being able to after my reversal.

Good luck with everything, I'm here if you need anything.
 
Sickranchero- I have had the same exact problem with leakage. I think I was cutting the pre-cut bags too small. I hope that was the problem. We will see if they work better now. I would try something other than Hollister, except that i really like the roll closure. I am trying new hollister bags for the first time and they stick a lot better than the last ones I tried (the other ones were standard wear and these are extended wear), so I am hoping that I get the kinks worked out soon. I really really want to try swimming this summer, but i am so scared to! Also, as to your output, mine is pretty much the opposite. It is pretty runny during the day and less so at night. Go figure. Just like all Crohns patients are different, I guess all ostomites are different too. It would be so much easier if we were all the same wouldn't it?

acg101- I just had my surgery two months ago and I now do not have any pain or Crohns symptoms AT ALL. No kidding. Even with the leaking and other problems I have been having, I am still having a hard time deciding if I even want to get this reversed at all. I never ever thought I would feel that way but I really truly do. Not having pain is awesome!

Cindy, Sorry that the wraps don't work for you. I always pull mine down over my butt, or just don't care if there is a bit of a line. I must admit, I am pretty fond of the undies, but I haven't tried the thong yet. I will soon. Once again, I guess we are all just different! I would still advise anyone who can only get one thing to get the wrap because you can wear it again and again before washing. I have spent a good portion of my salary on that site lately! I am thinking of getting the light colored thong for under my wedding dress (after I try the other one of course). :)

Also Cindy, thanks for your advice about the reversal. I am still very torn. As you say, I am loving life with my stoma! If I wasn't having these issues with my bag, I would be more sure, but I don't want to go through a life of leaking poo on myself.
 
Hey Joey, Whai a great picture on the motorbike!!! I hope you can ride it very soon. I hope after your reversal... Do you have crohn's or colitis?
yea, sleeping on my stomach is somrthing I will have I guess to give up although I think Nyx does it anyway... lol
my surgeon performed over 1700 Laparoscopic surgeries but my fear is my butt/anus removal pain... I hope it will not be too bad. otherwise I cant wait for my new life without pain, bathroom runs and mega doses of meds.
Jer's Girl - it is so great to hear that you are pain free!! the leaking problem I am sure can be resolved . Covatec has an extended wear uses different flange adhesive that doesn't break down with the stomach enzymes like other brands.
best
 
@Nicole...have you tried other brands of appliances? Call them and get some free samples and see what works best for you. I swim and go in the hot tub all the time and I use the Coloplast SenSura brand. I keep my flange on for at least a week without any leakage or problems. I found the the fabric-type flanges didn't stay on when they got really wet. Maybe just get some different appliances for swimming if you really like the appliance you use now but it's not great for getting wet?

As for the wrap, the design is really good, the fabric is nice and soft and comfy...I just have too big a butt to wear it...lol Glad it works for you though :)
 
acg - Thanks for the comment on the bike. As far as what I had, when they did the pathology on my colon and rectum that they took out of me they said I had colitis. For the past 6 years of colonoscopies and symptoms my GI and I have come to the conclusion that I have indeterminate colitis, but favoring UC. It's a big gamble with this surgery, so we'll see what happens in the future.
 
sickranchero said:
acg - Thanks for the comment on the bike. As far as what I had, when they did the pathology on my colon and rectum that they took out of me they said I had colitis. For the past 6 years of colonoscopies and symptoms my GI and I have come to the conclusion that I have indeterminate colitis, but favoring UC. It's a big gamble with this surgery, so we'll see what happens in the future.
Click to expand...

Joey, I went to some of the best GI AND surgeons one could find to ask about the reversal. We have discussed the pros and cons and for me the decision was to take it all out. In my case the high risk of geting pouchitis with the Jpouch is very high and I became alergic to the cipro/flagyl which is the way they treat the situation. I know it will take some time to get used to the stoma but I am determined to make it work and get my full life back without pain, tons of side effects from the meds, worry about not making it to the next bathroom.
With the advice from you all I will find a flange that does not leak and I can do my activities. I travel alot and from what Cindy indicated it not a problem.
 
@Dan...I have no problems traveling whatsoever. I've been on a plane twice since the surgery and only had to use the tiny bathroom once! lol I've also been in the car for 3 days (moving back to Ontario from Alberta) and on shorter trips in the car without incident. It's great not having to rush to find a bathroom, or worry that you won't be able to find one! It's amazing how stress-free vacations are now :) I'll let everyone know how my camping trip next month goes...
 
Thanks Cindy! I fly overseas both to Europe and the Far East so I was concerned about these long flights but I am sure I can manage once I get the hang of it.
You are such a huge positive energy and I am very thankful.
 
@dingbag - how are you feeling these days? I looked at the oakmed site but it was not clear if they have a two piece system and if they sell it here in the US. Also, do you typically are you wearing a belt?
 
Cindy, just wanted to let you know that I am trying the Coloplast SenSura brand at your request. I just ordered them so I'll let you know how I like them. :)

The Hollister ones I am using now are okay, except that they seem to break down on the inside, so they still don’t last more than two days (the old ones broke down around the edges of the outside).

This may sound like a stupid question but what is the difference between the standard wear and the extended wear? I could only find standard wear coloplast one piece systems. Does this mean that they won’t last as long? As it is, I have never been able to go more than two days without a leak with any bags that I have tried, and I really really want to be able to go at least three days and I also want to be able to go swimming this summer.
 
I would think that the extended wear would last longer, but I'm not sure. Like I said, I only change mine once a week and have gone as long as 10 days with the same flange. But, I use a 2 piece system (not sure if that makes a difference or not??). I would think that it's easier to clean a 2 piece system and keep alot of the moisture out of the flange (it's also easier to patch your paste if you need to since it seems to break down quickly). Do you like the one piece system? I had one in the hospital and hated it...I never felt like I could get it clean enough.
 
I like the one piece system because I am afraid with an iliostomy a two piece system might leak (since my stools can be pretty watery. I haven’t tried the two pieces. If these ones don’t work (the new ones that I should get in by Wednesday), I’ll finally try the two piece system and see if they work better for me.
 
Jer's,
Are you using a Hollister Adapt ring or Eakin ring? They have made a big difference for me. I put the ring on first snug around my ostomy. Then I apply the flange. I think with the ring, it would not matter as much if you have extended wear flanges or not. The ring becomes the "extended" part- at least in my mind. My output in not very liquid any more, so maybe it will not work as well for you.

By the way, I'm back at work finally. Dealing with public restrooms and work clothes. I also went swimming yesterday. I had been taking baths but this was the first time in a public pool. I wore one of the rash guard shirts and it worked out ok - Still self conscious about it. Luckly the Holister flange is bullet proof for me. I changed it this morning and it is still hard to remove.

Today at work I'm wearing an ace bandage around the top of my bag to keep it from flopping down. It holds on to itself, no fastener needed. Seems ok but a bit much with the Hollister belt too!
 
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CD dad, I did try the rings, but my bag still leaked by day three. Maybe I'm just one of the lucky ones who has to change her bag daily, or at least every other day. It has been pretty hard on my skin. I hope these new bags help. I just want to be able to go three days or go swimming without fear. We shall see i guess.
 
acg101 said:
@dingbag - how are you feeling these days? I looked at the oakmed site but it was not clear if they have a two piece system and if they sell it here in the US. Also, do you typically are you wearing a belt?
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hi Dan - my apologies for not replying sooner... i have so many bits & pieces to see to here that i keep missing posts :(

i'm ok thanks - just started LDN again (on my 4th night tonight), and feeling very hopeful. regarding the appliances, i have a feeling Oakmed might be UK only, but you could email them and ask if they ship to other countries, or have outlets outside of the UK. i 'think' they have a 2piece, but the one is use is one piece, and no i don't wear a belt.. i hate anything that i can feel around my waist.

i'm still experimenting with the appliances.. i do love the Oakmed 2nd skin ones, but the adhesion directly around the stoma isn't good - the rest of it adheres wonderfully, so i'm trying different rings to find one which adheres to the bag well. so far, the coloplast marzipan type one is the best.
 
I am new to this forum, just registered yesterday and it was bc of this thread that I joined. There is a lot of good info here for new ostomyites. I have had Rosy for about 4 weeks now and am still getting used to her. She's quite tempermental at times but I guess it's my fault. I'm still figuring out what I can/can't eat but I know it's a learning process. I am getting my reversal in Feb (hopefully) so I won't have her too long. I do have some questions that I have been trying to figure out.
First, do people shower with the wafer part on? If you do, how do you not get it wet? Or do you?
Second, what is the average time that your wafer stays on? My ostomy nurse told me to change mine every 3 days but I feel like if I'm not having issues with it, I can leave it longer.
Third, does anyone use a convex wafer? I think it's the wafer that's convex. I'm still figuring out the terms. If anyone that uses the convex can tell me if they have used a 2 piece and how they like it. I have only used the convex for the past week and I really like it but I really don't like the one piece bags. I ordered some 2 piece but am sort of afraid to use them.
Fourth (yes, I have a lot of questions, sorry!), has anyone used the phenoix ostomy belt? How did you like it? My ostomy nurse wasn't keen on it bc you have to turn the pouch sideways. I am a labor and delivery nurse and I need something to protect my bag when I go back to work bc women in labor like to grab!! Any feelings on these belts?
Fifth, does anyone take immodium daily? I know that might be a stupid question but I take 8 immodium a day and still have very runny stool. Is there anything else out there that I can try that might work a little better (and be a little cheaper)?

Ok, I think that's all the questions for now. I'm sorry I'm so needy I just have looked and looked for answers to these questions and this is the only place I have found that the people seem so nice and helpful. Though I am a nurse, this is all new to me bc it's totally different when I'm the patient.

Thanks in advance for all the help!!
 
I'll take a stab at this. One thing I have seen and read is that everyone is different in their ostomy system performance. Maybe it's due to stoma location, skin type - dry or oily, output type, etc. For example, one person may rave about adapt rings, but they don't work well for another.

1) I shower every day with my pouch on. Does not affect mine at all. I dry it off with my towel and it's good to go. I also run 5 days a week and the flange gets wet with sweat and maybe another shower.

2) I change my wafer (or flange) by schedule every 4 days. That seems to work for me. If I try to go 5, I might get some lifting and leakage. You can leave your wafer on longer, but if you start getting the itch, it's time to change. If you wait, you might get some irritation or worse and that's a bad road to go down.

3) I don't use convex so I'll let someone else take this one. I do use two piece - I like to change my pouch every two days, so with 2 piece I have the freedom to do that without changing the wafer. I also like to burp my bag sometimes, not possible at the flange with 1 piece.

4) I did try the Phoenix Ostomy belt. It did not work out for me because my output is thick, and the combination of the sideways pouch and pressure from the belt made me have blowouts. I do have an unused size small that I ordered by mistake (I needed the medium) that is free for the asking.

5) I know not everyone can, but I eat alot of fruit, and my output is usually very thick because of it. At work, I'll eat grapes and strawberries in the morning, an apple after lunch, and a banana later in the day. Then it's like getting frosting out of a funnel to empty the pouch. sorry TMI.
 
Lurking

Hey, everyone.
I do not have a stoma as of right now but it looks like I am heading in that direction. I have been hanging out here reading your posts. Thanks for all the advice and help you did not know you were giving me! It has helped with my (continued) fears.
Michele
 

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