So I've been meaning to write a bunch of posts but things get in the way and I just don't. So here's a mishmash of thoughts and happenings and tips and ideas and questions. 1. I've found it fun to aim my outlet at my kids (5&8) and threaten to hammer down on a full bag with my fist. 2. I've only had two leaks so far. Once in a paddle boat when I put my jeans under the cuff of my two piece and as I sat it lifted it off. Second was when I went to release gas through the ezvent when I thought it was full of gas. It wasn't - it was full of shit. Anyway, I've only had one other close call and that was after my first (and only) day of wearing my bag sideways. My filter got clogged and the bag ballooned up pretty bad at night and there was output pushing out to the edges of my wafer due to the pressure. Fortunately, I suffer from painful arthritis and caught it before a leak when I awoke in pain that night. 3. When I sleep I pivot my two piece throughout the night to ensure the bag is always vertical and the filter isn't getting clogged. I only sleep on my side so I just pivot it 180 degrees as I switch sides. This is all due to my theory that if I don't clog my filter sideways I'll limit my chances of night time leaks. So far so good. But after saying that I'm bound to leak everything everywhere tonight. I'll let you know about it tomorrow. I have worn my bag sideways for swims and other short term adventures without any major clogging. 4. I should really write down my thoughts when they come to me because I had a bunch more but I've forgotten them for the time being. I guess I'll add more later. I had a bunch of questions as well - But I've forgotten those too. 5. Oh yeah. Anyone use stoma paste? Think it would be a suitable replacement for rings? I have an irregular shaped stoma and have regular, minor, skin irritation and wondering if others have had success with paste? Anyway, that's all I can remember right now. Chris I'm currently using ventless with an Ostovent. I've joked about my crop dusting becoming even more controlled... If your ostovent gets clogged you can use the end of a cut in half qtip to re-open it. I don't bother pivoting my bag as I am ventless except for the ostovent... I sleep until I feel the bag get big, then go vent it. No leaks or burst bags yet. Wore my bag sideways, regretted it. My wafer eroded pretty much that day. Last two changes I've done I used just paste. I'm going strong on 5 days at the moment, I was managing 2-3. If I use rings it seems they erode a lot faster on me. I've got an Ilieostomy. Crohn's Colitis, Ilieostomy, Proctocolectomy November 2017 Chris I haven't tried the rings but I was using the paste for awhile with a flat barrier . I have an Ilestomy and the liquid seemed to get paste the paste somehow and I would have leaks 3 times in bed and couple other times luckily at home . And I had quite a problem with irritation for months I know use powder my surgeon prescribed for me after using Marathon till it cleared up although it isn't cheap it did work good for me . My ostomy nurse started me on the convex barrier and I don't use any paste or rings and so far knock on wood I haven't had any problems at all . Im like you I probably forgot half of what I was gonna say probably a good thing or this would really be long ! Proctectomy , Ileostomy , Ulcerative Colitis It's amazing how everyone is different through all this. Many people swear by wearing their bag sideways but it just doesn't seem to sit well with me. I even ordered a stealth belt in the vertical position. I have yet to receive it but am interested to see how I like it for activities. Not too many people purchase it that way. What the hell happened tommy last post. It's all supposed to be one single post. It looks like I quoted myself... or something. I mainly sleep on my left side propped on a body pillow leaving a gap for the ostomy. The ostomy is on my right so the bag hangs down. My night time output seems mostly liquid, it just flows on down. I don't lay on my right because I use a two piece and the flange pokes the heck out of me in tender places. If I wake up I check the bags weight to see if I need to empty, open the vent if it's starting to balloon, run my finger around the stoma through the bag to clear any thicker output. If I need to empty it's off to the bathroom where I empty and rinse the bag a few times and back to bed. Crohn's Colitis, Ilieostomy, Proctocolectomy November 2017 Thanks for sharing all of your experiences! Wearing your bag sideways is definitely not for everyone. I find that you'll either love it or completely hate it! Stoma paste can be handy in several situations. You have to view it as caulking, not adhesive as some people believe it to be. It can help to fill in gaps under your wafer around the stoma. Just your friendly neighborhood ostomate. Chris I agree with ya its interesting how different things work for different people . But it is interesting to hear all the different ideas and maybe try them . Good luck with the rings I hope they work for you . And I also agree you Felicity I wear mine straight I have worn mine sideways for awhile even have 2 belts for it but since I've changed to the convex barrier I've just been wearing it straight . I am up several times a night anyway so I do like you Felicity I run my finger around my stoma if there is any thick stuff there and if at all necessary I just empty it . I only sleep on either my back or my left side afraid to sleep on my right for fear it will smash it and cause a leak . Had 3 already in bed and don't want anymore . Ha I too have an Ileostomy and I use a 2 piece bag but with no vent . Proctectomy , Ileostomy , Ulcerative Colitis I have an ileo, too, and use coloplast sensura mio 2-piece with Hollister Adapt paste to ensure a seal. Just this past week I've decided to try the Sensura Mio 1-piece. I didn't even know it was a thing! Hope it works well. I pay out of pocket and it would literally cut my month supply order in half! Anyway, a couple things...I eat my largest meal for breakfast, a little smaller for lunch and just a small snack for dinner. I find by eating less at night I help eliminate leaks or blowouts at night. I normally sleep on my left side or my back. Before the stoma I was a belly sleeper. I drink a lot of water to help with absorption and tend to empty my bag whenever I use the toilet. I also squirt a few drops of baby oil in my bag after emptying. It makes the poo just slide right out each time. Eating plant strong, I tend to cook my veggies pretty well. Raw carrots have caused a few blockages when I forgot to chew, chew, chew. Those are my first thoughts on reflections and adventures! I'm still in early days and I am sure things will change. I joke that I am a science experiment. I put things in and see what comes out. No blockages yet and figuring out what works for my body. Frito corn chips/ chicken tamales have made for nice thick output. Mashed potatoes are always good. Rice scared the hell out of me, Oscar was shooting grains of rice out. They hit the bag across from the stoma, thippit thippit thippit... Made my boss cringe describing it. I might make sushi rice since it seems to cook softer. Crohn's Colitis, Ilieostomy, Proctocolectomy November 2017 FelicityG that is funny about the rice . Mine does that when I have coffee in the morning it can get kinda noisy . For me yes chips , potatoes things like that make it thick . Worst for me was corn I was told I couldn't eat it anymore but at a support group I went to they said try it try everything you want . I was nervous first time but found out I can eat it but as corn has always done it comes out about the same as it went in . Proctectomy , Ileostomy , Ulcerative Colitis Rice scared the hell out of me, Oscar was shooting grains of rice out. They hit the bag across from the stoma, thippit thippit thippit... Made my boss cringe describing it. I might make sushi rice since it seems to cook softer. OH. MY. GOD! Did the rice happen to be brown rice? I find those difficult to digest, but they never come out whole! Wow!! Posted by: figsisters2 Just this past week I've decided to try the Sensura Mio 1-piece. I didn't even know it was a thing! Hope it works well. I pay out of pocket and it would literally cut my month supply order in half! Yes, it's quite a difference in price between the one and two-piece systems! I'm actually wearing a budget one-piece ostomy appliance right now, and it cost something like $3.50 Canadian! I hope to review it soon. Anyway, a couple things...I eat my largest meal for breakfast, a little smaller for lunch and just a small snack for dinner. This is actually a good strategy, but many will find it difficult because dinner tends to be traditionally the largest meal for most. Eating plant strong, I tend to cook my veggies pretty well. Raw carrots have caused a few blockages when I forgot to chew, chew, chew. If you've got any recipes to share, please do so in the Food and Recipes section =) Just your friendly neighborhood ostomate. Thanks for the rice story! It is an adventure. And thanks for all the new posts from everyone. Chris.. thanks for the updates.. I was happy to hear your doing well and have a new thing to threaten your children with! Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017. It was white long grain rice, I'm kind of wary of brown/ wild rices. Had a small serving with my tikka masala. Chewed it, apparently missed some grains. Sat and watched Ostomy TV when it happened as I'd added two foods back in. Not scared off by it, but will be cautious. My diet preference leans toward Asian type meals. Love Chinese, Japanese, Thai and Indian food. All rice heavy types. Just thinking of all that good food has me drooling. Maybe I can convince husband to go to the Indian place here in town. Wonderful vegetarian food, apparently in India the family is well known for their sweets too. Never made it to being able to eat any of their sweets because I fill up on Chole Bature. Crohn's Colitis, Ilieostomy, Proctocolectomy November 2017 Round 2 with the rice. Added more water to cook it down a bit more. Very soft, I don't think Machine Gun Oscar will be happening this time. Was gassy as heck last night, woke to vent Oscar 3 times because the bag was about to burst. I had Cincinnati Chilli, love that stuff. It might be an afternoon food rather than a dinner food. Crohn's Colitis, Ilieostomy, Proctocolectomy November 2017 Hi Felicity, It sounds like you're doing great for a newbie. I had a very rocky start but am now at 4 months and doing just fine though I think I'd freak out if rice was shooting out of my "Pippa". My go to food that I eat almost every day is Lipton soup with extra noodles. It has no nutritional value but I justify eating it by thinking I'm getting extra liquid and salt. The days I don't eat it, my output is too liquidy. Sleep was a big issue but now I can go 2-3 hours without emptying though sometimes the bag is almost 100% full...I'm expecting one day to experience an explosion. Sigh I am one year in this week to an ileostomy. First up let me thank Eric for this forum and for the website. So many helpful hints and recommendations have made my life so much easier. I live in a rural area and access to the stoma nurse is rather limited. So what Eric has accomplished here Has been very important. Generally I have coped pretty well and I'm back to living an active life. Sometimes looking forward, the task of emptying this bag 8 to 10 times a day,is daunting. However Reading others experiences keeps me grounded. I had to smile at Chris's recollection of having a disaster when he thought he was just letting out a little gas. Playing golf this weekend I went into the woods to let go a little gas in my bag and had an explosion and the separation of my two piece. Very grateful that I carried supplies and that I was wearing dark shorts. You certainly learn quickly not to take yourself too seriously. Needless to say I did not set a course record. I have always been a traveller and since surgery have taken two lengthy flights. Security still presents challenges. And the bathrooms on the plane are brutal for someone who is 6'3. Eric's comments were good preparation. However I tend not to eat anything anytime during the day of a flight. I am planning to spend part of the winter in Mexico. I would appreciate any comments or insights into coping with the heat and dehydration which for me is a constant problem. As well I am hoping to dive and I'm looking for comments on anyone who is experienced diving with an ileostomy. I am also worried about diet in foreign locations. Good news is I found guacamole and tortilla chips are a great thickener. On the downside legumes and tequila not so great. Beans I can skip - tequila???😩 Thank you all for sharing your experiences. You have made my new reality easier to cope with. Eric - you have made a difference.👍 Welcome to the forums, Diamonddave! Glad that you're continuing to be active with your ostomy! I welcome you to post your questions as separate entries in the general ostomy forum : https://www.veganostomy.ca/community/general-ostomy/ They'll be easier to see and answer individually. Here's to hoping for a warm winter in Mexico 😊 Just your friendly neighborhood ostomate. Hey Diamonddave sounds like we are pretty close on the anniversary of our ileostomy mine was 1 year the 19th of September . Sounds like you are getting around really well . I hear ya about the bathrooms and finding places I am always on the lookout when we go out too . I do get out a little more now as time goes by . I have a motorcycle that I didn't get on for awhile but am starting to get out a little more now . I live in a desert area so like you I always am dealing with dehydration all I can say is drink plenty of fluids but hey a little Tequila never hurts I manage to get a little in now and then myself but Beer works ok for me too . LOL . Cant help ya much with the rest but Enjoy Mexico ! Proctectomy , Ileostomy , Ulcerative Colitis Thanks Robert One year- we made it. Tough as hell. My wife probably saved my life - as hospital was chaotic after surgery. She never left - one month inside and 3 months wearing bags to drain infection. Still worry about bulge in my clothes. Not sure why. I'm dead without the surgery! Vanity?
Im glad to hear your experience with the paste Robert. I received a sample but have yet to try it. I did also get a few rings from coloplast as a sample and have been trying them too. I changed this am and though I was itchy as all hell last night, I didn't have much of any skin irritation this am. I'm going to try these rings a little more and see what happens. I've been using eakin rings till now.
Felicity? How do yoy feel about your output sitting on your stoma all night? That's another reason why I pivot it. It drives me nuts when the stool is just sitting on the stoma and wafer. I think it's more of a psychological thing but I can't help but this that my wafer is being eaten away a little more with output in it for 8 hours (I wish I got CLOSE to 8 hours sleep a night).
Anyway, interested in your thoughts.
~ Crohn's Disease ¦ Ileostomy ~
~ Crohn's Disease ¦ Ileostomy ~
~ Crohn's Disease ¦ Ileostomy ~
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