Ileostomy bags won't stick and leak after a few hours... Help!

I don't even know my local ostomy assoc. the wound/ostomy nurse at the hospital said call anytime so i might give her a call. She was fantastic. I loved her. She gave my husband an ostomy doll who had his own 'ostomy' and gave him a pediatric bag and taugh him how to measure, cut and place a bag on the doll. The doll will always be around here.

I'm still kind of partial to the clear bags because i can aim while putting it on better. My stoma is far from a circle and my surgeon placed a mucous fistula from the 1/2 of my colon thats left beside my stoma so i have to make sure that has extra room on that side... I can also see when the wax part turns white which means its starting to degrade/wear out and where a leak may be developing.... An opaque one would be awesome to hide the poo but take away from the things i prefer with the clear bag. {sigh} i might make a cover for the bag and call it a day on that front until im comfortable with putting bags on and i also watch the consistency like a hawk bc i did get backed up before and i'll be darned if that happens to me again..

I just want someone who can relate more than i want professional help... Theres just so much more than the ostomy im frustrated with too. And knowing crohns can com back on any day, any second is not a comforting feeling and i could just end up on the 'chopping block' again and again. I don't want that to be my life. I will not accept being in the hospital constantly as my life.

I looked for a belt online today and they are waaaay too expensive for how long i will be using it (knock on wood on the time thing...) $100 is a lot for a belt. I guess i'm going to try and make my own. If anyone knows of where to get a not so expensive belt or cheap substitutes that wouldbe greatly appreciated.

PS (we were writing at the same time) -- I got a belt for free from edgepark w/some free samples.

Are you looking at the hernia belts, which are expensive? There are belts that are much simpler, just to help hold the bag. Here is an example (no endorsement, I don't actually wear one): https://www.edgepark.com/shopcatalog/item/zr8300/ostomy-(all-other-supplies)/belts-and-retainer-rings/appliance-belts/

Insurance should cover some of these.

I've been out and about. Friends over, my reading goes in and out depending on my mood, i've watched enough tv since november i basically turn it on for noise anymore. I want to scrub down my house. I'm still restricted with activities from an abdominal washout at the beginning of april. I'd go to town cleaning and gardening if i could.

My weakness is pretty bad... I lost 40 lbs and a goo majority of it was muscle. I've always played sports and when you have a problem doing a stair its more than frustrating. I can't squat or i go down, getting up off the floor is hard as hell depending on how sore i am. Its been getting easier, but no where near what i used to do. Lifting anythin heavier than a few pounds is almost impossible. My laptop is the heaviest thing i've lifted, its about 6 lbs and i don't get it put much because its hard work for me. Thats why my typing awful because im on my phone most of the time. To get on the floor the back of my legs feel numb from lack if muscle. I doubt i can get inmy own bed. I've been camping on the couch or recently the recliner because i can finally work it sometimes and my husband worked so hard to pick it out for me and i couldn't use it. I felt so bad. I'm so lucky to have him.

All of this has made my husband and i closer. I don't think many people can say that, esp younger couples in their mid-20s. I got very lucky when i met him. He does my wound changes twice a day, cooks, cleans, works, and we still want to have time together. :)

Those belts cofuse me... They look so skinny i can't see how it'd hold a bag... I was looking at ones that look like the belly bands for pregnant women. Ones that would hide it in a tankini and other clothes.

Those belts are to help the bag stay on, not to hide it. Some wafers have tabs that they attach to.

A cheap option for something to hide a bag is a tube top like this one: http://www.amazon.com/Seamless-Bandeau-Strapless-Tube-Black/dp/B0035QLRKS/ref=pd_sbs_a_1

More expensive (but not $100) is the swim wrap from ostomy secrets: http://ostomysecrets.myshopify.com/collections/mens-swim-wrap

I haven't used the pregnancy bands, but a lot of people here have, and they worked great. I didn't hear anyone say anything about using them for swimming, but depending on the material don't see why it'd be a problem.

Great that the illness has made your relationship closer. I found that too, although after a while we both got very sick of the nurse/patient dynamic (I had 3 months of bed rest, with daily "butt checks" where my partner often jokingly reminded me that she never considered being a nurse) ... but once I started feeling better, it was easy to get past that, and the closeness remains....

I use the pregnancy bands, but there is no reason to sew a pocket in it. Just put it on and put your pouch under it, fold the pouch up and tuck it under. I usually turn the belly band too, so its not all the way up my stomach. But I rarely wear it, the bag won't show.

Andi, I love to swim and couldn't swim for over a year due to complications from my surgery (and for a bit before that because I was just too sick). It was frustrating waiting, but boy did it feel good when I finally got to go.

Experiences like ours do change a person.... but even thought the experience was not welcome and not good, some of the changes can be good. I am sure that you will be a much better nurse for having this experience (even while I'm sorry you've had to go through it).

I had a lot of young nurses in the hospital, and some of them I just found annoying because they seemed to be so separate, to have no clue what it meant to be sick and no idea that some day they could be the sick one too.....but the ones who had experience themselves or with a sibling, partner, etc. were much different....

Do you have an advisor or someone who can advocate for you at the school? I teach college, and where I'm at, you would be eligible for an incomplete, with medical documentation -- but it's tricky in that there are forms to fill out that people can't always fill out when they are, say, in the hospital. However, I can almost always sort things out for students after the fact -- grades can be changed, even after the semester has ended (students don't tend to know this, but faculty do -- I just have to fill out a form....).

I can totally see why you're questioning your choice of nursing as a career. I'm sure you had some good reasons for choosing it in the first place (and you were clearly doing well in school). I think it's one of the toughest jobs around, though. Seems like the folks that love it really love it and wouldn't do anything else.... but it's not for everyone. Hope that as you heal you'll also find some clarity to help you figure out what work you want to pursue.

Hospital stays can be very traumatic -- I hear you.....

Hang in.

Its funny u ask about an advocate bc there isnt one. My advisor knew less than i did about graduation application, etc. Her, the dean, the bursar have all shown how much they care by not answering my many calls/messages and emails... And the college is for 'nursing and health sciences'... Funny how such a college is so helpful (NOT) to people who have health problems...

I chose nursing because my mom got diagnosed with an autoimmune disease that eats away at the myelin sheath on her nerves and can paralyze and kill her. She did almost die bc of lack of proper medical care and by luck she heard of the disease and she was almost dead before she found a doctor to listen to her and test to see of that was what she had. My dad was dignosed with cancer about the time i was diagnosed with crohns and is currently in te hospital getting chemo. I wish I could help my mom with takin care of him and go visit whenever i wanted but i can't because of everything i'm going through.

I want to finish school i just dont know when it'll be possible. If i can go back in the fall will i be mentally ready? Would another semester off to just get back into and enjoy life for a little bit to get back to life. I hate not knowing the answers to those questions... Flashbacks aren't good for a nurse to have while taking care of a patient... :/ so yeah. I'll have to wait and see I guess.

The one instructor that did help me out with finishing the lecture part last semester was awesome. I know they are busy right now with finals. (it's aggravating watching people who were a semester behind me now graduating...) They quickly made my email through the school disabled and I haven't gone through the website to find her e-mail. The dean when I talked to her was very nice, but dear god they are unreliable. I'm gonna have to put on my $***kickin boots when I can drive and go down and stir up some $***. I doubt they'll let me register for fall until that bill is resolved. I've paid $25k to that school in two years... you think they'd care a little bit more of who gives them their paychecks...

It's been a fun trip the past few years with school and everything else and ending up here... ha. I just want a break at this point. I don't know if taking off another semester is a good thing or not. I half want to make sure the remicade will work at keeping the crohns under control too. Nursing school can be beyond stressful so I'm in no hurry to stress myself out more. BUT I want to be done and graduate at the same time. <sigh>

I have friends I can talk to... if they're not wrapped up in their own problems. Seems like everyone is having relationship problems lately. My husband is awesome, and my mom. I wish I could go back to work. I might try in a week or two after this drain comes out and its not sore. I'm lucky to have a job that's let me have this much time off and can come back whenever I'm ready. There's not many jobs like that... I'm counting down the days to when I can drive again so I can just drive and listen to music by myself. My dog would love going on car rides too with me. I don't care how expensive gas is at this point. It'll be relaxing to just do that. Cleaning my house and gardening will be awesome when I can do those things again too. Some days just pulling weeds is a good frustration reliever especially when they are deep buggers. My life just seems to be a hurry up and wait game the past few months... wait to see what happens. And now it's waiting until my next surgery and hoping that I don't get another infection or complication in the meantime. I have an appointment with my surgeon next week. I'm hoping I can talk him into getting this show on the road asap with the next surgery. The sooner it happens... the sooner it'll be over. Maybe I can get lucky and have remission with the remicade for years and years....

Oh wow - you do have a lot going on. I just wanted to chime in on the belly band things, yes they have them at Target and they are EXPENSIVE in my opinion, twice what I paid for my Victoria's Secret variety at the time. Also check out eBay http://www.ebay.com/itm/330688437404?ssPageName=STRK:MEWNX:IT&_trksid=p3984.m1497.l2649 I purchased these in 3 springy colors (blue, yellow and pink) - I like to wear them like a faux layering tank. I put it on around my belly then put whatever top I am wearing over it then my bottoms OR you can put your bottoms on then put the tube around your middle layering it OVER your bottoms so when you put your top on it looks like you are wearing two tops. Does that make any sense LOL!? I know what I mean in my head but sometimes have trouble converting it to words hahah!

If there is something you would like to see me cover on my blog let me know, I have a running list of ideas that I will get to at some point. I think my next post is going to be a picture of what my middle looks like so people can have a better idea of what I am battling with my clothes - if that's not a way to lose readers I don't know what is LOL!! Keep being proactive and looking for answers - I can sense your attitude getting better :)

I was just diagnosed this past december... From november to march I was in the hospital 3 out of four months... Not all at once. 2 1/2 weeks after my first colonoscopy and I was a direct admit to the hospital after i woke up because they could only get halfway through my colon because of all the swelling. 4 days out and i woke up dehydrated and feeling like I got kicked in the stomach by a horse. Back in for another 2 1/2 weeks. Out until i thought i had a kidney stone and it turned out i had two microperforations that were not leaking, had surgery feb and found another perforation that had walled itself off to my abdominal wall. They took out 1/2 my colon, they originally thought it would be 3/4 of it. Up until october i never had any symptoms or problems. My GI doc said i was one of the most severe cases hes seen. (yay me.... I don't half-*** anything.. Haha). So its been like being hit by the same darn bus over and over and over... Steroids failed, remicade helped but was started too late i think. After my loading doses i had a colonoscopy and they got through to my small intestine. My ascending colon was affected the most (on my right side), i went to the doc in the beginning because i though i had appendicitis. Sadly that wasn't the case... I'd be much better off if it was.

I'm pretty much doing a waiting game on the clothes front at this point because of the drain thats placed right along my pantline... I must thank a man for that placement... Until then yoga and sweat pants it is. :/ I'm trying to collect things for FL in a month but cant try anything on because of the stupid drain. I hope it comes out because its causing about 90% of the pain i have now. I can't wait to be pain med free because i've been on one form or another of them since november. Im finally weaning off and loooove it because my brain isn't foggy. The headache of withdrawal is worth it because pain meds are not a way to get through life. They made the hospital stay much more bearable because i don't remember somethings like being a rapid response and transfered to the ICU two times.

When i get out im better off. Even a dumb trip to target for nothing is fantastic because its not my living room and a tv. Me being distracted and out is better than me being at home and bored. When i get back to work i'll be much better off. I can talk to people and be out of the house. I'm a homebody but ive always been able to go out and come back by myself to get random things for around the house and i miss that a lot...

Allbluezoo- i found a tankini at target the other day that the top seems long enough. I'm hoping a skin colored belly band under it will keep everything hidden. I also bought a one piece im not sure about either bc of being tight on the bag or something but i have yet to try it on so i'll see... I also have dresses that it will be nice to have a band to support under them. I'll be figuring out work clothes and just normal clothes after the drain comes out. I don't even know what size i am anymore. Probably a -2 lol. Being super small makes it even harder with clothes... I think holding my pants up will be hard because im flat from my back to my legs now... Bah. I look anorexic and donot enjoy the fit of clothes one bit... I'm thinking skinny jeans will be a better fit because they run smaller. I also need to figure out how to hide my pogo sticks (legs) and be cool during the summer. I hate that its been really hard to gain weight... They said its going to take a long time to break 100lbs... But i hate to spend a lot of money on clothes that idk how long they'll fit for...