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J-Pouch ForumsOstomy & Skin
Where is your stoma?
LHettiLHetti
aka KNKLHEAD My apologies for not being clear .. I didn't have re-positioning, necessarily. I had a temporary ileostomy, the take-down to pouch, then another ileostomy in the same place, then another take-down. Two in the same place. However, I developed more issues with the pouch and back to a temporary, but the surgeon wanted a new location for this, switched to the left side for this new ileostomy. I hope that makes sense! In essence this is my third ileo but takedowns in between. [ more ]
Donna H KH, How extent was the surgery for just repositioning of your stoma??? How long was the surgery? I have mine for another 6 months and did not even think of doing something like this. [ more ]
aka KNKLHEAD Hi, I had the opportunity to "choose" a new location for my second "temporary." My first one was too high, just above my pant line. I had to buy pants that were much longer than normal and hike them up! I looked pretty goofy with hiked up pants! Ostomy placement is very, very important, and frankly, the ostomy specialists in the hospital IMHO are not all that good about placement. When discussing where it should go, she immediately drew an X. I told her no, I wanted it lower and then she... [ more ]
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J-Pouch ForumsOstomy & Skin
wet wipes ?
PouchomarxPouchomarx
Former Member ❤️
PoucherInTO I have huggies wipes for sensitive skin - there is no alcohol in them. As for adhesive removal wipes Coloplast (and probably other brands) makes sting free wipes that work well for me. Just be careful with wipes - some leave a residue and then it's a pain getting your wafer to stick. [ more ]
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J-Pouch ForumsOstomy & Skin
Advice needed
L Lou_Lou
aka KNKLHEAD I had ithcy skin around the stoma and it was red (probably because I scratched it!) and I am pretty confident it was the soap I was using around the stoma and not rinsing properly. I us a non-irritating soap and really try to ensure I rinse very completely and dry before putting on the wafer. Hope it helps! [ more ]
Lou_Lou Hi I am not too sure which products she is using to be honest, but I can find out. She has had these issues the whole time so it's not just a new thing. Pretty sure she has mentioned redness, what would be symptoms of yeast? [ more ]
PoucherInTO Hi Lou_Lou Itchy skin eh? OK, what products is your mom currently using? Adhesive remover, barrier spray, etc. Has she changed anything - soap, lotions, detergents - even if these things don't get under the flange, I thought it might be worth asking. Is she sweating more under her flange? Is it red or bumpy? Any chance this is yeast? [ more ]
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J-Pouch ForumsOstomy & Skin
abdominal & stoma pain: new
GinLynGinLyn
GinLyn Yikes, I hadn't even considered that. Thlbpt. I have an appointment this week and will let her know. Thanks! Gin [ more ]
Jan Dollar It sounds like tightening adhesions, maybe even a bit of a stricture at the stoma. What does your surgeon say, or does he know yet? Since this is a persistent problem, you should inform him. Jan [ more ]
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J-Pouch ForumsOstomy & Skin
What's this burning sensation?
R rabbit81586
rabbit81586 Thanks, Poucher. So according to my WOCN, I'm cleaning my area a little too good and might be aggravating the skin that touches the stoma. It could also be the adhesive remover wipes. So the solution is to not scrub the area and to not use the adhesive remover wipes so close to the stoma. Also, I need to cut my wafers a bit bigger. Luckily its not any type of infection so hopefully these simple things will clear it up in a few days. [ more ]
PoucherInTO Heya Rabbit! Nice to see you over here Let me know what your doctor thinks! Also sometimes it's worth posting questions about ostomies under the "General Discussion" board (since most jpouchers had an ileo at some point, it's worth posting there). Many people don't scroll down all way to the "Ostomies" board but are happy to offer advice and suggestions. Have a great day! [ more ]
rabbit81586 Thanks off the response but I shave with an electric trimmer Everytime I change my setup so I avoid that. I go see my doctor tomorrow and I have a call out to my WOCN. I'll post what they tell me. [ more ]
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J-Pouch ForumsOstomy & Skin
ANOTHER STOMA
PouchomarxPouchomarx
liz11 so I use the tape to "picture frame" the outside edges of the flange. shower up! then peel the tape back off when done with showering adds like and entire 35seconds to the showering routine, so no big deal [ more ]
Pouchomarx So after my shower i would just peel it back off the adhesive for the flange? while its wet or dry? [ more ]
liz11 there's the link. get the 4" wide stuff. Also its a bear to learn how to get the backing off. Once you get it I can walk you through it. https://www.edgepark.com/shopcatalog/item/sc311099 good luck [ more ]
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J-Pouch ForumsOstomy & Skin
Eakin slim sizes?
GinLynGinLyn
Troy yes. I am using Hollister adapt rings. they are ok, but I have ordered samples of Eakins to try. [ more ]
PoucherInTO Hi Troy, I definitely think it's worth trying a convex wafer. They gently push your peristomal skin down and away from your stoma opening. Are you using any type of barrier to help protect your skin? I use an Eakin under the convex flange and I have had no issues so far. I hope this helps! [ more ]
Troy Hey poucherinto. my stoma sits really low at bottom. would convex wafers work for this. it seems that is where most of my leaks start. thanks. [ more ]
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J-Pouch ForumsOstomy & Skin
How to slow drink output
DaDDie2DaDDie2
oonja ❤️
Ljz daDDie2, When I got my first ileostomy, I was told to never drink anything without eating first. Exactly opposite of my normal but I do believe it helps! Mostly was a problem at night since I drink water all night without food. Depending on how much you plan to drink, eat more absorbing foods. Pretzels and saltines are my best. Good luck! [ more ]
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J-Pouch ForumsOstomy & Skin
trouble with leakage
S Solomin
PoucherInTO Hi Solomin Sorry to hear about your leaks. OK you are using the convex system - are you able to push down on the convex part of the wafer and then secure the flange properly? I know sometimes the convexity likes to pop up if it isn't pushed in quite a bit, and then secured really well with the rest of the wafer. Also, are you maybe covering part of the loop stoma with your flange, and then stool leaks underneath? I know when I had a loop I had to be extra careful in how I cut the wafer... [ more ]
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J-Pouch ForumsOstomy & Skin
Coloplast 2 Piece Flex
P PoucherInTO
PoucherInTO Hi Again Everyone! I just wanted to give a quick update on the Coloplast 2 piece flex that I've been trying, I usually use the Coloplast 2 piece click. OK, the profile of the flex is definitely a lot closer to my body. And I can't even feel I'm wearing it - unless the bag is filled up and getting a bit heavy, know what I mean?! But then again, I couldn't really tell I was wearing the click system either as my skin really loves the Coloplast SenSura flange. It was easy peasy to apply, and the... [ more ]
chiromancer If you just want to change the bag, that is leave the skin barrier/waffer and replace the bag the system works OK and is lower profile than the system you are using. It is just that I hardly ever need to do that. However the opposite is not true you can't change the barrier and reuse the bag or remove the bag to look at the stoma and then reuse the same bag. Yes the barrier strips look like half moons and will probably work really well when you have recovered [ more ]
PoucherInTO Hi Chiromancer Thanks for your reply, it is the adhesive based coupling system and I was wondering how effective the adhesive would be if I wanted to change the bag along the way. The company is sending me a bunch of the barrier strips - they look like half moons, right? I've heard great things about them for swimming, sports, etc and can't wait to try them out as once I'm recovered I want to get back to the gym 4/5 days a week and I'm a person who sweats a lot with cardio so the extra... [ more ]
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J-Pouch ForumsOstomy & Skin
Signs of appliance allergies?
DaDDie2DaDDie2
DaDDie2 Thanks all. I eventually had to hit the ER and my favorite WOC Nurse was right on the job. She claims it's a minor fungus issue. Gave me some powder Nyaststin(I think) things seem a little better. Still waiting on my precut order to start. [ more ]
tulsamom I became so allergic to all the adhesive products that I'd spend a lot of time in the shower with a bottle of Maalox. It did provide relief when I spread it over the inflamed itchy red area - a big square. I had to change my appliance at least once a day, it was so painful and itchy. I tried everything and even went to the dermatologist and in the end there was nothing I could do but pray for my take-down to come fast. I wish you all the luck in the world!! [ more ]
PoucherInTO It sounds like stool is getting under your wafer and irritating the area around your stoma - this was happening to me until I found the system that works best. I make sure my skin is clean and very dry, then I apply stoma powder where there is the redness. Dab off any excess powder to make sure your adhesive sticks correctly. Then apply a barrier (there are sting free pastes or a cohesive seal - like the Eakin or Adapt. Coloplast also has a Brava line with seals). Call manufacturers for as... [ more ]
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J-Pouch ForumsOstomy & Skin
Perfect Pooping Position
P PoucherInTO
PoucherInTO AHAHAHAHA Donna! That's hilarious, thanks for the good laugh [ more ]
Donna H Ha Ha, Kristy. You are funny! As I said above, I discovered I can empty without pulling my pants down by facing the toilet tank. Well, I was at a restaurant last night and I did my duty and then had to reach backwards to get the tp which is now behind me because of my position. It was a smaller toilet than mine at home and it was a bit of a reach and when I did, I fell right off of the toilet and onto the floor. I started laughing because what else could I do. It was funny but I was glad... [ more ]
PoucherInTO OK All, so here I was thinking that my butt must be REALLY large because I just couldn't get the right amount of space to cleanly empty my bag if sitting on the toilet. Then I realised the problem is not with my booty, but my toilet is kind of round and small. I used a public toilet which was shaped kind of like an oval and there was so much more room! And for those with a sense of humor, "Does this toilet make my butt look big?" Hehehe. [ more ]
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J-Pouch ForumsOstomy & Skin
Back to Ileostomy after 30 years
S Solomin
DaDDie2 Hey there Solomin, I'm no expert here but I'm experiencing the same discharge and my doc said it's completely normal. The consistency and frequency are determined by your diet. [ more ]
Selma I wish you the very best in the reconstruction of you j-pouch. I had one for three years and was absolutely miserable and during that time I lost weight, couldn't eat most foods, etc. I have had my permanent ileostomy for 3 years and feel it has given me my life back. I manage it well and thankful for it. [ more ]
Goody2shoes I think that is quite normal - I pass that all the time - have j pouch construction and temporary ileo - not connected up yet after 10 months. Good Luck with your forthcoming surgery (I hate my temp ileo and can't wait to get reconnected !!) [ more ]
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J-Pouch ForumsOstomy & Skin
Showering
EricEric
Cataja I take the bag off and just shower with the wafer on...been doing this forever...no problems at all. [ more ]
AyrishGrl I typically put a dry bag on after I get out of the shower. It feels cleaner that way. If I am just being lazy around the house that day I will blow dry it so it doesn't stay soaking. [ more ]
Lynne2 If it's going to be just a pretty quick shower, I don't use anything, then wrap an absorbent washcloth around my bag when I get out and blow-dry on cool setting, if needed. If I'm taking a longer shower (I admit to indulging in long hot showers sometimes!), I like to fold up the bag and wrap plastic wrap around my waist to keep it drier. That is probably not necessary, but it makes me feel more comfortable because the appliance is less wet after the shower and easier to get ready to dress... [ more ]
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J-Pouch ForumsOstomy & Skin
Gas in the bag
S Selma
Lynne2 I swear by Osto-EZ-Vents! I haven't heard of the pin-hole trick before, but I would be too chicken to do it for fear of leaks. The vents I use are very simple to use: attach to outside of bag, poke a hole, then close the top (which is similar to what you'd find on a beach ball. Those vents have saved me on a number of occasions. Before I found them, I had accidents when opening my bag if it was filled with gas and stool. There might be other brands out there with a similar concept. I use the... [ more ]
Donna H For the odor, I am using Cepacol mouthwash that I put on a square of TP (or half of one) and stick it in the bag. It works very well so I do this every time I empty. My home health nurse told me about this and she also told me about *****ing the top of the bag for gas. It does seal itself off so you would have to do it again throughout he day. It is so helpful to share these little tidbits to make our lives easier. What might work for one might not work for the other but every idea is worth... [ more ]
Badplumbing Over on the ostomy forum of the healingwell forums this topic just came up too and someone posted that they add this after market vent to any bag- it's called the ostoEZvent and, as an ostomate to be, I can't say how quick and easy it is to install, but the poster said it works great; it is unfiltered so of course one needs to be in a non public area when you open the vent: http://www.kemonline.com/content/home/ [ more ]
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J-Pouch ForumsOstomy & Skin
itchy, smelly, and losing more weight
DH Donna H
liz11 hot liquids can definitely make fluids gush out of you. So tea... maybe cut back on that for awhile. Also plain water can make things gush. Try drinking only a true WHO electroylyte solution all day every day for a week or so and see if things change for you. Also try to reduce your sugar intake, that may help with the gas situation. [ more ]
JillM The gas gets better over time. THe liquid issue gets better too, but you might want to try Immodium. Take two at the same time each day for a few weeks. You will find that things thicken up and slow down. [ more ]
Donna H Hmmmm, let me look into that. I don't know why I have gas since I am still so careful in what I eat. And, btw, do liquids just flow out of you after you drink them? I had a lot of water yesterday before some blood work. I had to empty every half hour for a couple of hours and it was pure liquid. It sure cleans the pouch however. I love tea, either herbal or decaf, and that stuff runs through me too. Perhaps it's just because I am 3 1/2 weeks post op??? There's still lots of stuff to figure... [ more ]
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J-Pouch ForumsOstomy & Skin
Core Exercises After Surgery & Beyond
Lynne2Lynne2
oonja ❤️
itsnotsherry Thank you Sharon! I won't begin yet, but I will start shopping for balls! [ more ]
skn69 Shari, 3 Weeks is way too soon to start any abdominal exercises...I would wait until at least 6...then I would start out slowly. I have 3 different sized balls...the biggest is the huge Swiss ball, it stands about 2 1/2 feet tall and I keep it blown up to just under full pressure. Basically I start out by sitting on it, both feet flat on the floor and try to find my center of balance. I hold my arms out to the sides and then I then bounce slowly up and down (like little kiddies do) without... [ more ]
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J-Pouch ForumsOstomy & Skin
hi all, I love and miss eating salads
F foxwoods777
Domino300 With UC I had a lot of things I couldn't eat. Now with an Ileostomy I can eat anything,don't know why salad causes a problem if you chew well. [ more ]
liz11 I eat salads all the time with my ileostomy, in fact just had a steak salad for dinner. The only thing I avoid in salads are mushrooms. What is your concern? [ more ]
Lynne2 Start small and chew chew chew! In the beginning, I would avoid things that are especially prone to causing gas (beans, cruciferous vegetables, etc.) and definitely avoid things that could cause obstructions, especially in the early stages of healing when intestines could still be swollen (nuts, corn, really fibrous foods, mushrooms, etc.). You might want to check out the United Ostomy Assoc site for more ideas: http://www.ostomy.org I am only a few months out from my surgery and enjoy lots... [ more ]
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J-Pouch ForumsOstomy & Skin
Serious Skin Pinching/Pain After Eating
O oldmanFL
liz11 boyfriend, it does sound like it might be inflammation or adhesions behind the stoma. If that is the case she needs to talk to her surgeon. It may be something as simple as an in office dilation. If you or she thinks it is simply a skin or wafer thing, you could try an experiment by taking off the appliance and holding a bag or trash can nearby and see what happens after she eats. Maybe the wafer hole is too small? goodluck. keep us informed so we can help you help her. [ more ]
Rachel88 Hi Mike, I'm sorry your GF is having so much trouble. I'm wondering if she has been scoped since her take down? I had similar problems when I first had the bag, and also thought it was an appliance problem. It didn't feel like the same kind of pain as with the colitis or pouchitis. But, it turns out, I had a lot of inflammation still left in there. The reason for it is still unconfirmed (the biopsy came back inconclusive, of course), but I have been on a whole lot of anti-inflammatories... [ more ]
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J-Pouch ForumsOstomy & Skin
Skin irritation under the wafer
S Selma
Selma Thank you for the help. I will try the powder and will find me a wound care nurse if it persists. I did try the stoma powder and the steroid cream with the coloplast and it was better this morning when I changed barriers. [ more ]
ISeeUC You've tried number of things already, so I'd go to a wound care nurse and see if they can figure out what's going on. Assuming you don't have an infection, maybe try another brand of barrier wipe/spray? [ more ]
WinniethePooh I had a rash from razor burn, and the wound nurse gave me some antifungal powder that worked. http://www.amazon.com/Sween-Co...Powder/dp/B0002DM5C6 [ more ]
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J-Pouch ForumsOstomy & Skin
Advice please!
EricEric
Shell Worrall Eric, I had the same problem when I first got Wee Willie. (I did have pyoderma, but that's a different story). Wee Willie is like yours, he hangs down and was getting cut on the sharp edge of the wafer where I'd cut it to shape.. My stoma nurse changed me onto the Convatec moldable wafers and that solved the problem as no sharp edges. Love and hugs Shell [ more ]
Lynne2 So glad you got it worked out! Cheers! [ more ]
Judy1 Sorry Eric, but the virgin statement has me in stitches. Only you would say that. I am happy everything is ok though. Take care Mr. Virgin. LOL [ more ]
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J-Pouch ForumsOstomy & Skin
More free Coloplast supplies
EricEric
Eric Sorry guys, supplies are gone, found a friend right here in Toronto who wants them, thanks! [ more ]
Lynne2 If you don't get any takers on this site, I am sure you can find a good home for your supplies elsewhere. Ostomy support groups often have a share table, and rest homes and county social services for uninsured might be interested. Oh, wait, you don't have uninsured, right? Maybe call a government agency that handles health and human services to see if they are interested. There's a great group called Girls with Guts that would be a very worthwhile place to donate, but I don't know their... [ more ]
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J-Pouch ForumsOstomy & Skin
Ostomy Supplies need a home
S Selma
Lynne2 Hi Selma, If you don't get any takers on this site, I am sure you can find a good home for your supplies elsewhere. Ostomy support groups often have a share table, and rest homes and county social services for uninsured might be interested. There's a great group called Girls with Guts that would be a very worthwhile place to donate, but I don't know their procedure for accepting supplies. Even if you don't donate supplies to GWG, I encourage you to check them out on FB or online. Thanks for... [ more ]
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J-Pouch ForumsOstomy & Skin
Vitamins, Clothes, Appliances
Lynne2Lynne2
Lynne2 Thank you for the feedback, Selma. I actually just got one of those wraps and am looking forward to wearing it for the first time tonight. I totally agree about the decision to go perm ileo. Looking back, my husband and I both agree that keeping the ileo instead of going for the j-pouch connection would have saved me from 15 years of discomfort, increasingly potent drugs, lifestyle limitations, emotional stress, who knows what pouchitis for 15 years did to the rest of my body, and etc. etc. [ more ]
Selma I wear the Ostomy Secrets wrap. The pocket holds the bag nicely and it smooths the bag out so I feel more confident it isn't bulging as it fills. Watch their site for one of their sales if the price bothers you. I wear a two piece and can wear fairly tight fitting pants with confidence, just empty frequently. With time you will be more confident about the fit, etc. Getting rid of my j-pouch was the best decision I ever made, wish I had it from the very beginning, live and learn. [ more ]
Lynne2 My goodness. . . more very valuable tips. I'm telling you, I don't know what I'd do without this group of experts. As I mentioned to Pluot (Liz) in a pm, it is so funny to me that we are complete strangers and yet we turn to each other with very personal questions about things like undergarments! So, thanks to your advice, I am more on track with how to proceed. I am in the process of getting samples of various bag types. I'm getting the boy shorts tomorrow morning and will be ordering the... [ more ]
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J-Pouch ForumsOstomy & Skin
VSL
Lynne2Lynne2
jeane Just from my personal experience, my dad has had an ileostomy for 25 years and has never used probiotics. Although his surgery was performed many years ago, he has never used probiotics nor was he ever recommended to. He has had a perfect functioning ileostomy with complete renewed health snd zero GI issues since be removed his diseased colon without ever using probiotics. [ more ]
Jan Dollar Without a reservoir, I don't see where it would colonize. Jan [ more ]
Caty Lynne, I don't see any reason to use VSL or any other probiotic. I've had my permanent ileostomy since 2007. I enjoy yogurt once in awhile, but I don't need it. I suffered from pouchitis and fistulas from 1992 to 2007. All that craziness stopped after I got my ileostomy. I just became a healthy person again. You might want to wean yourself off the VSL, but that's the only thing I might do if I had been taken VSL as you have. Caty [ more ]
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J-Pouch ForumsOstomy & Skin
A real side splitter!
EricEric
Eric Actually, yes, it is, I've never had a defective bag until now, I'm hoping its just an isolated incident. [ more ]
Pluot This isn't your first defective pouch right? Might want to look at a different brand or at least a different batch... [ more ]
rachelraven Mine did. When I had my loop. It just crashed right open and off of me, dousing me with poo. Luckily I was at a department store, and my mom bought me a new outfit, though I cried like a baby. I was only 19, and just humiliated. [ more ]
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J-Pouch ForumsOstomy & Skin
Using Vent/Filter Bag
Lynne2Lynne2
itsnotsherry I do not find they work with an ileostomy. Stool is too liquid. I use ez vents. It sounds complicated to attach to pouch, but it really isn't. I LOVE these. I prepare about 10 pouches at a time, so I am always ready. They are inexpensive and work, really worth a try! Best of luck! [ more ]
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J-Pouch ForumsOstomy & Skin
Donating old supplies
LesandiegoLesandiego
Lesandiego Thanks Liz! I just sent an email to Girls with Guts. Site says they will start accepting donations in July, so I guess that's now! Will post later to let you know how smooth the process works. [ more ]
liz11 Here is where I have donated supplies many times in the past many years: https://www.ostogroup.org/ Also girls with guts just started accepting donations to redistribute to those in need. http://www.girlswithguts.org/images/poop.pdf [ more ]
Pluot My WOCN takes them and donates them to an organization that coordinates distributing ostomy supplies to ostomates in need. She told me I could bring them to her after my takedown. I will get the info for the charity at my next visit and post it here [ more ]
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J-Pouch ForumsOstomy & Skin
Last Question for Awhile (I hope!) . . Thick vs Thin?
Lynne2Lynne2
chiromancer My opinion is just let it be.I dont use anything, though I could see there might be special situations where I would.I havent had hydration issues. My output varies a lot, from liquid to paste. I just want it to keep working and not plug up. The one partial obstruction I had was with a loop ileo, before the J pouch take down, and I was using immodium at the time perhaps coincidence but maybe not. [ more ]
Lynne2 Ad, it has been a long time! Glad to hear from you. Thanks for the helpful post. Hope things are improving for you. ISeeUC, Liz and Jill, your posts have consistently helped me in meaningful ways during my transition to perm ileo. I can't imagine I'd be doing this well without you! [ more ]
liz11 my preference is toothpasty consistency. however, like jill, I really don't bother worrying about any of it now. Seems it just varies on its own so very much. Plus I have SIBO, very bad, so I had to stop all immodium. I don't like the real liquidy bag, but I just empty more when its like that. [ more ]
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J-Pouch ForumsOstomy & Skin
Probiotics with No J-Pouch?
Lynne2Lynne2
Lynne2 Wow - that's a surprise that Dr. Shen doesn't recommend them. I'm beginning to think that fermented foods and yogurt might be the better approach. It seems like focusing on bolstering certain strains could lead to an imbalance. And how to know which strains? On the other hand, I have noticed improvement in the past when I've used them. It intuitively makes sense to me to feed the good so they an overpower the bad. and then theres the question of prebiotics. Hmmm. . . If I come up with any... [ more ]
liz11 I don't bother with probiotics. the meister shen doesn't believe in them. They cost too much. And when I tried them in the past, they just increased gas massively. With that said.. I do eat healthy, keifer, yogurt, etc... [ more ]
Lynne2 I think I might have asked too many questions or sounded too confused in this post. Hope this makes more sense: Does anyone on here with an ostomy take probiotics? If so, what kind? Thank you. [ more ]
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J-Pouch ForumsOstomy & Skin
Coloplast sucks!!!!
EricEric
Lynne2 More sage wisdom passed along by Liz11. . . Maybe you should start a consulting business for people transitioning to life with an ileo. Your description of what goes on when sent home from the hospital matches my own experience exactly, yet it didn't occur to me to search beyond Hollister. Sounds like Coloplast could be a good fit. I am going to be on the phone Monday morning to Coloplast and others, plus I need to see if I am restricted by what my insurance covers. Thanks! [ more ]
liz11 I love my coloplast sensura setup. Sorry it didn't work for you eric. every manufactures' adhesives seem to be so different. So finding one that works for you, sticks, doesn't cause allergic reactions is so important. Let alone hoping the overall system is one you are happy with - due to active lifestyle, size of bags, cloth backing, how you were your clothes, etc.. It is difficult as we are sent out off those hospitals with whatever preferred supplies the hospitals use, but then it is up to... [ more ]
Jan Dollar Wow! You guys have my utmost respect and awe. You seem to have been able to sort through all the different products and find the "one" system that works best with your specific ostomy. I guess it is quite a lot like the j-pouch, no real rules, just guidelines, and it all boils down to individual tastes, tolerances, and fit. I only hope that if and when my time comes when I need an ostomy, I can adapt as well! You guys give me hope and reduce my fear.... Thanks! Jan [ more ]
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J-Pouch ForumsOstomy & Skin
Working full time
EricEric
JillM I went back full time 4 weeks after perm ileo surgery. AND I worked full time while pregnant with my ileo. 13 years later, I have two kids, am co-chair of the school PTA, serve on the school site council, just started a full-time, at home travel business, manage karate, swimming, gymnastics and soccer practices and games for my kids - I'm more than full-time work busy with no problem. I think it is all how you feel. If you feel up to working full time, do it. [ more ]
itsnotsherry Hi Eric, I went back to work one month after surgery. I can't imagine not working full time. I feel better than I have in 20 years! [ more ]
Lesandiego When I had my ileostomy, I did not work because I had 2 more surgeries within the next 8 months to create the J-pouch. I had no job to return to (medically separated) and it was more of a social issue rather than a weakness. I am now working part-time, 5 hours a day with the J-pouch [ more ]
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J-Pouch ForumsOstomy & Skin
UOAA Conference
I itsnotsherry
itsnotsherry Anybody else going? [ more ]
itsnotsherry Thanks for the info Caty. Wish you were going to this one! [ more ]
Caty Hi, I attended the one in Reno, NV two years ago and it was excellent. We also got to see the surrounding area, especially Lake Tahoe. The conference had many excellent lectures, good food, and great vendors with lots of freebees. You'll have fun and meet a lot of people, all with ostomies. My husband and I are going to skip this one (even though we live in Florida) because once you've gone to one, you've pretty much seen it all. We'll probably go again down the road sometime. Caty [ more ]
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J-Pouch ForumsOstomy & Skin
Debating perm ileostomy
vanessavyvanessavy
JillM kmj - I wear all the same clothes I used to with my j-pouch with my ileo. I've never been into really low rise pants, but I don't wear granny pants either. I'll be going out tonight in skinny jeans. The key is to remember that no one is looking at your belly. Seriously, do you look at people's stomachs when walking the mall? Trust me, no one is looking at yours either unless you have fabulous abs and they are exposed If I'm going out in a really fitted outfit, I use Immodium to slow the... [ more ]
chiromancer Sounds to me as if you should have had counseling and or a support group early on. I assume you have an end ileo? Most people do well with the J pouch a few of us dont, so the odds are in your favor, but I assume you reasearched the ups and downs of the suregery and the results, if not you should look into it further before going forward. You dont say why you had the ileostomy in the first place so it is hard to comment on if this is a good idea from a medical standpoint. From a... [ more ]
ljk Please, Anyone who is reading or on here. I NEED ADVICE!!!!!! PLEASE help me!!!!!!!!!!!!!!!!!!! [ more ]
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J-Pouch ForumsOstomy & Skin
Tips on shaving the hair around your stoma
EricEric
oonja ❤️
Pluot So clever! I read in a new ostomates handbook once that another way to do it is to use a trimmed toilet paper or paper towel roll, the cardboard tube. I guess the added benefit there is that it's a strong barrier to prevent you from accidentally nicking the stoma. [ more ]
Steven Muster Just to add my comments on this subject as it's really quite important (I know the post is a month old now!). I was getting leaks & real pain tugging at the bag every few days until I started shaving around the stoma. I don't put anything over it, but have the timing down to a cue. Two hours after breakfast I get no output for another hour or so. It's a case of knowing when is the best time for you. Since shaving I've not had one leak. I change twice a week, once on Monday & again on... [ more ]
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J-Pouch ForumsOstomy & Skin
Leakage from bottom of bag
I itsnotsherry
chiromancer If you have the two piece that is adhesive rather than a mechanical connection that might be the problem. I had several leaks with the adhesive seals, always at the bottom, which is logical. The adhesive two piece sensura is problematic. I use the one piece now and have no problems. I never had problems with the velcro closure on either the one or two piece. [ more ]
liz11 yes and do that folding back part when you empty. That keeps it all nice and clean. hopefully this all works for you. [ more ]
itsnotsherry Liz, I know I am sealing and folding ok. I don't usually do the tucking flap thing. Maybe that will help. I didn't even think of that!!!!! Thank you! That's why we have this site! [ more ]
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J-Pouch ForumsOstomy & Skin
Showering tips please.
EricEric
Selma If I shower with my bag on I just put on a fresh bag after I shower. I like showering without wafer to give my skin a treat. Just shower before much food intake so the stoma is quiet. [ more ]
Eric Actually, the Coloplast bags have a filtered vent at the top, allowing gas to escape when the pressure builds up, and the charcoal filter takes away any unpleasant odours, it's a wonderful feature. I remember when I had my temp ileostomy back in 1991, the bag looked like a plastic shopping bag (felt like it too) and would leak from gas build up all the time, I absolutely love the new appliances, so much better, I often forget its even there! [ more ]
liz11 best solution I have found for gas in the bag, is to focus on your eating habits, how you eat, what you eat, etc.. to try to reduce the gas itself. [ more ]
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J-Pouch ForumsOstomy & Skin
Tips/Tools for Barbie Butt Prep?
Lynne2Lynne2
liz11 Lynn, The two tests are to confirm that you have two negatives for cdiff. Both are the same... poop tests. That's it. nice and easy. gross, but nice and easy! And once you have had cdiff, it is easier to get. So just remember to ALWAYS get cdiff checked if weird things start happening. With an ileo - more output, fevers, weird and grosser smell, etc.. Always, ask for a cdiff test. Lots of docs don't think you can get cdiff without a colon. Wrong. But cdiff test is easy. For me, I just get my... [ more ]
Lynne2 Hi again, Liz. I'm posting this message instead of pm'ing because others might benefit from your response. What are the two different c-Dif tests you mentioned? Mine was discovered during a scope because my GI saw some unfamiliar "dots" and decided to take a stool sample while he in there. Will i need to do the tests ou mention via scope or just regular lab stool sample? Thanks! [ more ]
Lynne2 Liz, you know the perfect advice, as always! Thank you very much for the insight, suggestion, and support. I appreciate your feedback so much. Thanks! [ more ]
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J-Pouch ForumsOstomy & Skin
Weight training with ostomy
B Badplumbing
vanessavy I have a continent ileostomy. I have done Muay thai, Bjj and I powerlift/Olympic lift and Crossfit. I have had no issues what so over with my stoma or pouch. [ more ]
arvenderpan I think you should must follow the "skn69" instruction she have a wonderful suggestion for you just hold for a while it will be beneficial for you as she is saying.. I really appreciated "skn" your post.. thanks for this.. [ more ]
Badplumbing Thanks, skn69- I certainly am willing to give it all up during the healing phase or phases- will do whatever it takes to ensure success. What concerns me is the idea of forvever giving some things up or forever being stuck on low weights, and your answer at least gives me hooe thatisnt the case. Have read of firefighters having perm ostomies and aurely they have to be able to be capable of carrying people. [ more ]
See all 4 replies...
J-Pouch ForumsOstomy & Skin
exercise
I itsnotsherry
JillM No, but they are different. There is a video on line showing how to do it. If you need just light convexity, you can try an eaking with it to give a little lift. The product is super flexible, super low profile. I wish they worked for me. [ more ]
itsnotsherry I am glad to hear that you like them, but sad about the convexity. I use slightly convex wafers. I will give it a try and hope for the best. Are they difficult to put on? [ more ]
JillM I love, love, love the Cymed product but can't use it as I need convexity. I recently tried their wafers again and still can't do it. But you should try them. They will send free samples. [ more ]
See all 8 replies...
J-Pouch ForumsOstomy & Skin
My flange fell off, help!
EricEric
DMP Try Brava Elastic Barrier Strips or Secuplast Hydro. These are half moon shaped strips that are skin friendly that go on the outside of your flange and skin to help give extra security. They work great. [ more ]
hart155 I second the advice on not using scented soaps. I use hand soap, anti microbial to wash around the site. If I use another soap it always falls off early. [ more ]
dawn58 try coloplast barrier strips [ more ]
See all 6 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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