J-Pouch ForumsOstomy & Skin
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J-Pouch ForumsOstomy & Skin
So glad to hear you're feeling well enough to go for a walk! But 10k?! Eeek! It sounds like you've found a great solution with driving to the park and walking a shorter distance when you're there. I completely understand the desire to get out there and live life with your renewed health, but please listen to Jill's advice. We would be sad to see you take a step backward in your recovery because you rushed things. Take care of yourself and enjoy the sunshine. [ more ]
I'd love to do that, and Toronto is on the water front (Lake Ontario), but with so many ships and power craft in the harbour I wouldn't take the risk (a good friend of mine rented a canoe, went out into the harbour, and got swamped by a ferry, sunk the canoe). I've actually found the solution, we have many beautiful parks here, so I drive to the park, and go for a short walk, my favourite being High Park (http://en.wikipedia.org/wiki/High_Park), its just about time to see the cherry... [ more ]
Kayak, canoe? That is less stress on the lower portion of the body. [ more ]
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J-Pouch ForumsOstomy & Skin
HI Eric, I am so glad you are feeling better. This ileostomy thing sure is a trip, isn't it? Here is what I have tried, since I have had my permanent ileostomy. I tried the pheonix belt, and wearing the bag sideways wasn't an issue, however, the belt itself was bulky, hot, and just plain uncomfortable. You also completely lose your wasteline, and I like to wear somewhat form fitting clothing. This also requireds a 2 piece system, and I know from other posts, you were probably going with a... [ more ]
Eric, I wear the phoenix ostomy belt. It requires that the bag is sidways. I have never had a problem wearing it that way. Keeps bag close and secure don't feel any added weight. All of my shirts have some sort of design on them. A lot of plaid shirts, it makes the "bump" invisible. If you get any ostomy belt, wait until the swelling has gone down. Good Luck [ more ]
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J-Pouch ForumsOstomy & Skin
Just an update, feeling 100% better then I did a few days ago. With the type of pain I was having, I suspected an infection, so I started myself on a course of Cipro (I always keep some handy), in less then 24 hours it began to work, and now, I can almost eat normally and the abdominal pain is all but gone. Still feel a tad neaseaous, but nothing I can't handle, now it's my incision causing most of the pain. My home care nurse has been removing my staples bit by bit as I've had several small... [ more ]
eric - there are some strip kind of things that you can kind of "putty up" and put in skin folds. I think by hollister. PM me know if you can't find them and I will hunt my stash and find you the exact part numbers. Also - remember you are recently out of surgery so your abdomen and stoma will be changing shape for awhile. So maybe this skin fold thing is just temporary. and yes- since you are so soon out of surgery.. time to see the doc. Better to go see him tomorrow and get everything... [ more ]
Already did that, no answer as usual, I'll get Freddy to drive me over there tomorrow, but, touch wood, I am feeling a little bit better, I actually kept food down today, and the neasea is slowly subsiding, fingers crossed! Eric [ more ]
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J-Pouch ForumsOstomy & Skin
Hydrogen peroxide is a cheap and effective odor eliminator, just a few drops in the bag. 32 oz bottle is cheap and lasts a long time. [ more ]
Oh, and I heard from a fellow ostomate that this stuff works great to keep the bag smell down: http://www.nascent4u.com/index.htm [ more ]
Depends on what I eat... if I've eaten any fish or eggs recently then I stink pretty badly. I found this Poopourri stuff that helps keep the bathroom less of a toxic waste dump. http://poopourri.com/ [ more ]
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J-Pouch ForumsOstomy & Skin
Yes, both of the above issues can cause partial obstructions, and can come on gradually. But, yes, you don't want to wait for it to become an emergency. Are there any bulging areas around the stoma? If so, could be a peristomal hernia. Jan [ more ]
Thanks Jan, I dont have a total blockage. It is passing but just not very easily and i can feel it coming through uncomfortably which wasnt always the case. I dont think its an emergency situation just yet but i will get in contact with my doctor on it. Better safe than sorry. [ more ]
First, are you able to pass a small finger through your stoma easily? If not, you may have a stomal stricture, and yes, time to see the surgeon. Don't try to force anything. If you can get your finger in there OK, then there may be an obstruction, either by fibrous food buildup or from adhesions causing twisting/kinking. If switching to a liquid diet does not move things through, again a visit to the surgeon is in order. You may need some imaging to figure it out. Good luck! Jan [ more ]
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J-Pouch ForumsOstomy & Skin
I think it matter how consistent the shape of your stoma is. Mine is always different and so I cut to fit each time. I feel more confident when I can put the flange on and see the fit is good and then put the bag on. Also being able to "burp" the bag is important for me because sometimes it fills up with gas quickly at times when a restroom is not nearby. I'm not sure what you do when this happens with a one piece system. [ more ]
Ok , I will make the case for one piece. I dont disagree with the posts previously written regarding the advantages of the two piece. They are pretty much all true but I found the advantages to of very minimal value, for me. I tried the two piece for all the reasons listed and found the two piece has those advantages but I just didnt need or make use of them. I did have a couple of leaks with the two piece at the connection due to operator error but they were still leaks. I think this is a... [ more ]
Agree with everything Liz said. The only advantage I see of one piece over two piece is that it has a slimmer profile (lays flatter on your body), but there is no need to think about that in early days after surgery. Some people say they like one piece better because with a two piece the bag can detach unexpectedly from the flange, but that just means you are using a ****ty two piece! In any case, your insurance will probably only cover a month of supplies (maybe three) at a time, so you... [ more ]
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J-Pouch ForumsOstomy & Skin
It may be that something you ate, or the immodium, or the combo caused the pain and a small blockage. When my blockages pass, I usually have a period of all liquid output. On occasion, my stoma retracts flush to the skin, but it then pops back out. Sometimes its a food thing, sometimes it happens in the shower, no real pattern, but nothing to panic about. Hope you are doing ok today. [ more ]
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J-Pouch ForumsOstomy & Skin
When my son became sensitized to Eakin seals, I switched to ConvaTec's Stomahesive strips. They are similar and not quite as pliable, but they did not cause a rash. [ more ]
You could try old fashioned stoma paste. I found It is useful for filling in irregularities/voids caused by scars and surgery. Coloplast also makes barrier rings which work well. [ more ]
I have used Eakins, but it didn't give me relief. Infact it was causing bad side effect on me. I would suggest you to ask to good doctor, since these product are suitable for person to person. Landscape Architect San Antonio [ more ]
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J-Pouch ForumsOstomy & Skin
Bad plumbing, There are these new materials called (I think) Spankx or something like that...they are stretchy and breatable fabrics and they manufacture every type of undergarment out of it...they have 'waist belts' for men and women with bellies that worked great for me when I had my hernia surgery and had to wear an indwelling tube plus bag on the outside...it didn't smooth things out 100% but about 85% which was fine with me...I was able to go to work, teach in front of a class and not... [ more ]
you might try this post in the men's forum as many in the forum have had an ostomy at some point and you will get more men to look at it. I wear men's boxer briefs when I exercise because they keep my bag nice and close to my body. I wear a 2 piece system that I angle toward my opposite leg to distribute the bulk a little more. Do you already have an ostomy? If not, you can have it placed below your belly button line so that it really won't show much under a tight shirt. I don't wear tight... [ more ]
Jill- thanks; I am a male, albeit same height as you, so the bag size thing is relevant to me too. I was hoping that I could mount a bag horizontally using one of those support belts but it seems that does just replace the tummy problem with a problem of looking "waistless" (per @Shari) plus then there is the issue of it not filling properly due to the gravity issue. The ostomy secrets underwear looks very appealing, but I guess that still doesnt solve the problem of constricting flow with a... [ more ]
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J-Pouch ForumsOstomy & Skin
Definitely get samples from Cymed. Where you expressed concern over visibility, these products would be great for you if they work. Very low profile, very flexible, can't even tell you are wearing them yourself. They do not make a convex product which is why I don't use them, but I'm going to try them again as my stoma has changed a bit these days. [ more ]
Try this . The companies that you can contact directly are Coloplast, Hollister, Convatec. Edgepark also has supplies and I think people have said they're very helpful kathy [ more ]
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J-Pouch ForumsOstomy & Skin
...you look for shirts that are long and loose when shopping. ...you unconsciously put a hand over your bag to check if it's time to empty. (I found myself doing this even after I had my take-down for awhile! I've got my 4th temp ileostomy right now...) ...you buy the extra large, economy size bottle of loperamide (Imodium) and carry it everywhere with you. ...you have stopped wearing belts with pants. [ more ]
You want to create a barrier of some kind to keep the seatbelt off your stoma cause it is just "uncomfortable". A rude person who barely knows you (but loves to gossip) walks up to you at work and asks "do you have a BAG?" with a sneer, like it is any of their business and you hold up your purse and say "Yes! I got it on sale at Penney's. Isn't it cute?". [ more ]
you know you have an ostomy when... you'd rather empty your bag in a gas station restroom en route, where the smell will go un-noticed, than wait to get to your destination. [ more ]
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J-Pouch ForumsOstomy & Skin
Steven, are the blockages that you experienced related to your j-pouch? I thought they are a risk of having any intestinal surgery. I assume you no longer have the blockages? [ more ]
Thank you for sharing your experiences, it's very helpful as I'm still very much in the 'exploring' stage and welcome all feedback in order to make an informed decision. Rhema [ more ]
Shari - almost identical to my experience the only difference is that I had the pouch operation in 2000, so I got 10 ten years out of it. But now I wish I had the stoma instead from 2000. The vomiting and pain was just plain awful! I felt that life was not worth living (for very short periods of time). There is light at the end of the tunnel and although I was offered a stoma a few years before, I refused thinking if I get through one more blockage I'd be okay [ more ]
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J-Pouch ForumsOstomy & Skin
J-Pouch ForumsOstomy & Skin
Hi again Caty, I'm glad you can handle yours so well and hope mine get easier to deal with. I had 7 last time, surrounding my stoma. They just wouldn't respond. I only hope this time is easier. I don't regret my decision either. Just tired of pain one place or the other. I saw dr. Nogueras in December and he was so happy we went ahead with the surgery. I look and feel so much healthier. This too will pass! Thanks for the advice! [ more ]
Hi Itsnotsherry, It's hard to remember, but I think I get about 2 to 3 occurrences per year--all little ulcers that I jump on with the Protopic. I know immediately when I have an ulcer starting because the area hurts to the touch and I can see my skin turning a bright red color past the flange white tape. It's probably going to be a chronic condition for the rest of my life but very controllable thus far with Protopic. It's the same as when I had my j-pouch. I could tell when I was having a... [ more ]
Hi Caty, Thanks for your quick response. I put the protopic on it as soon as I saw it. When did you have it prior to december. I am wondering how often I may have to deal with this nonsense. I had such a difficult time gettting it to heal last time. I didn't respond as well as you did to the protopic and had a long stint on steroids as well. I was praying this was a one time thing for me. Thanks again! [ more ]
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J-Pouch ForumsOstomy & Skin
Barb, You may want to PM Liz. She has been struggling with a persistent sinus tract/infection and has been seeing Drs. Remzi and Shen at CC. Maybe if you compare notes with her, you might get some new insight and ideas. http://j-pouch.org/eve/persona...profile&u=3721048013 I would suspect that you may have a deep cavity abscess, which is the source of many, if not all, of your symptoms. Jan Update: I had posted the wrong link (wrong Liz). Sorry about that. I fixed it. [ more ]
Thanks, Jan. Nope, have barbie butt now. Yep, it certainly looks like a fistula to me. I've not had the cutaneous wound before, but who knows what this body is trying to do!? I don't have a lot of energy because of the dehydration and fluctuating b.p., but having watched the fistulas before, I anticipate what's in store as the drainage increases.....Maybe if I get the hydration/tissue fluids issues solved, the fistula will close. Don't know if this is the same fistula spot as before - they... [ more ]
Gee, with the symptoms you describe, this sure sounds like a relapse of the fistula. You don't still have your rectum, do you? Third spacing of fluids will cause swelling/edema, but shouldn't cause a new fistula. If it was already there, I suppose the fluids could cUse it to drain. I hope that things will simmer down until you can get back to SF. I'm sorry you are having this setback. Jan [ more ]
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J-Pouch ForumsOstomy & Skin
I've had my ostomy for 11 years. I conceived and carried two babies with it. I hauled around toddlers who kicked my stoma, sat on it, poked at it when curious. Last summer I spent all day every day in the pool with the kids. I totally get the fear factor of the ostomy. But truly the only limits are the ones your mind convinces you of...feel free to PM me if you want me to share more details of how I live with and pretty much forget about, my ostomy. [ more ]
Is a colostomy way diferent then an ileostomy? [ more ]
Hi Ihatethis, Lots of compassion and sympathy for you, I know what it feels like to have your life constantly put on hold until something else gets fixed...you just have to keep concentrating on the longterm and try to ignore the day to day stuff...Liz is right, you need to rest and heal up a bit first...take some time to get your strength back...start out really slowly getting back to chores...give yourself itdy-bitty little goals like just one small thing to do/get done...tell yourself... [ more ]
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J-Pouch ForumsOstomy & Skin
Nope! I was really careful and took care of my ostomy and it was always great no smell [ more ]
no smells here. In fact when I had my very first ileo.. that was my fear.. that my dogs would be bothering with it. But never ever.. not even once... have they ever sniffed the thing. I now have three dogs and my 4th and now perm. ileo. No smelling here! [ more ]
I have 3 cats and 2 dogs...if there were any smell they would notice it...thats never happened. [ more ]
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J-Pouch ForumsOstomy & Skin
Burning is not healing, its usually that effluent is hitting raw skin. I would change asap. I NEVER get 5 days of wear. I change every 3-4 days and find it keeps my skin better. If I have a raw skin area, I change every day till its gone because it gives the skin full protection from the eakin for several days. I would skip the wipe - all those preps irritate my skin more than they help. I use a convex wafer with an eakin, stoma powder when needed and that's it. No wipes, preps, pastes,... [ more ]
[quote]The opening for the output has dipped down and is flush with the bottom of the stoma at the skin line! If anybody has this issue,[/quote This makes it very difficult to pouch. I would say you need to use an separate hydo colloid seal and or need a pouch with high convexity. Frankly this is a bummer. I had a flush stoma for about 6 months before it was revised and 2 days per pouch was all I ever got. A flush stoma is hard to pouch successfully. [ more ]
Totally agree with Liz. I was told to change the bag at the first sign of discomfort, usually itching but burning especially. In my experience that is the right thing to do. My "sign" of healing is that I feel nothing. I will wait until it is convenient to change if I can. The output actually burns the skin due to the level of acidity, we have to keep the output off the skin. There is no way to see what is going on without removing the pouch and skin barrier. Five days pouch ware with an... [ more ]
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J-Pouch ForumsOstomy & Skin
I agree Marcene - I rarely think about my ostomy. Usually its if my daughter brings it up that it strikes me as different. Amazing what good health can do for the mind as well as the body! Love my ostomy and all it allows me to do! [ more ]
my second pregnancy was with my ostomy. No problems, wasn't even high risk,. Sex is no different with an ostomy, but it can take a bit after surgery to feel like you have your body fully back. I've never had a leak from sex. You may not realize unless you've had an ostomy for a while, but you don't actually think about it all the time and it isn't as big a part of your life or identity as others may think it should be. [ more ]
Had a j-pouch, but had chronic pouchitis and chose to get a perm ileo. Got pregnant three times, miscarried once. I did need IVF to get pregnant (I had four abdominal surgeries before trying to get pregnant), but was successful first try with IVF all three times. I was 30 when I opted for the perm ileo. 34 when I conceived my first baby and 37 for the second. The current protocol is that if you want children soon - next 2-5 years - you get the ileo, then have your kids, then pursue j-pouch... [ more ]
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J-Pouch ForumsOstomy & Skin
Have you tried Convatec durahesive moldable convex wafer since your stoma is weirdly shaped. Call them at 1-800-422-8811 for samples, they are not stingy, they will send you four to try. I never liked the Eakin. I use the Brava moldable ring by Coloplast. Lots of folks also like the Adapt barrier ring. Instead of using the whole ring I cut in half make a circle ring of it and shape it into the wafer. I have an end ileo and it has taken me almost 9 months to find something that halfway works. [ more ]
My husband recently had an ileostomy and the area just beneath it developed what looked at first like a split in the skin. The doctor said it was normal, but it is now bloody and we are having leaks because the paste doesn't stick well to it. We tried putting stomahesive powder on it, dampening it, reapplying and dampening three times to make a crust, but the area is fairly wide and we aren't sure what to do. Don't want to keep changing bags..they are so expensive. We will call the osteo... [ more ]
I had the same problem with my loop ileo. My stoma was very flush with my body and had the same issue. As soon as I told the stoma nurse at the hospital about she gave me a new appliance with a riser, which is like a special ring to the flange that helps the stoma stick out, and it really helped. I also had issues with changing and output. I waited 2 hours after I woke up, like if I woke up at 8 I would do the change at 10, and it behaved for a bit. It was to a point that I was so quick and... [ more ]
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J-Pouch ForumsOstomy & Skin
I empty 5-6 times a day, including once at night, and "burp" the bag once or twice. [ more ]
Widely varies based on what I eat, if I use Immodium, if I"m really busy. Generally maybe 4-6 times a day. But if I take Immodium and am busy, I can go 6 hours or more without emptying. It was more in the beginning. Over time I noticed it became less. But really, with how much I drink to stay hydrated, I pee a lot, and if I'm already in the bathroom, I usually just empty whatever is in the bag then. So I don't really pay attention... [ more ]
6-8 But I could wait longer sometimes before I empty. [ more ]
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J-Pouch ForumsOstomy & Skin
Itsnotsherry, It would seem normal that it is on the opposite side of the ileo..we tend to compensate with the oposite side of whatever hurts to help us feel relief... My right hip hurts terribly and my left knee doesn't like it at all (neither does my left ankle)...my problem is sacrolilitis until further tests...and just like for the arthritis you must keep those joints well oiled...walking, swimming, climbing stairs or hills or and repetitive movements that keep the circulation going...I... [ more ]
It can take up to ten days Or longer for intra-articular steroid injrctions to have a full effect. Plus, they don't always work. I've had those injections in my wrists, elbows, knees, and shoulders. Sometime they are useful. Sometimes not. If inflammmation is not a main component causing the pain, it won't have as much of an effect. Either way, it is not like an instant pain relief, other than the short-lived numbing from the anestheic that is mixed with the steroid. Ideally, it improves... [ more ]
It seems I have arthritis in my hip and not sciatic nerve issues. They gave me a shot of cortisone in the hip joint, but 5 days later, still no relief! It is the exact opposite side from my ileostomy. This makes me nervous. Could something about my anatomy be causing the pain? [ more ]
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J-Pouch ForumsOstomy & Skin
J-Pouch ForumsOstomy & Skin
any kind of moving and twisting... though he probably isn't up for much of that so soon out of surgery. also narcotics definitely slow down the gut. So the sooner he can reduce his pain medicines.. the better. overall.. how is he doing. I know this was a big surgery and you were very concerned. Plz let us know. wishing him the best. [ more ]
Hot tea, a lot of walking around, salty clear soups, heating pads, massage...and a lot of fluids in general...Especially warm ones...I do well with a hot water bottle too. Sharon [ more ]
I drink Grape Juice when I get nausea from blockage symptoms. [ more ]
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J-Pouch ForumsOstomy & Skin
I pretty much follow jills regimine. Definitely minimalist. Maybe adding a bit of powder and barrier wipe just around the stoma if im sensing some potential irritation. [ more ]
I use paste every change, and powder and barrier spray if there is irritation(maybe every 3 changes)This system gets me a whole week of wear so I'm happy with it. I do have to cut to fit each time and that gets old as it is always different. [ more ]
It all depends... I have had three stomas a loop which took a one piece pouch, some cavillon spray skin barrier and stoma paste, maybe two or three minutes. Next was an end ileo stoma (with disconnected J pouch left in place) that was nearly flush which took an elaborate process (10 minutes+) to get one or two or very rarely three days of wear with all too regular leaks and some major failures. Now I have an end ileo with a really good stoma that was created/revised when my J pouch was... [ more ]
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J-Pouch ForumsOstomy & Skin
you know, the more I ask around, the more I'm finding "specialized" surgeries having been done by general surgeons. Example- my nephew had to have half a lobe of one of his lungs removed at birth, due to a congenital defect in that lung. I just found out it was done by a general surgeon, not a thoracic surgeon! And this was at Childrens Hospital in Boston, where there are TONS of specialized surgeons. I realize that no surgery is "routine", but I feel fairly sure mine will be about as... [ more ]
My original surgery for j-pouch was done in 1986 by a general surgeon and in 2007 the same general surgeon removed my j-pouch(thanks to c-diff) and placed an end ileostomy. Had lots of problems but mainly because I was so ill going into the surgery. My GI told me that if he needed any surgery including a heart-lung transplant he would let this particular GS do his surgery. Have not had good feelings from the 2 CR surgeons I have met with so I will stick with my GS for any more surgeries... [ more ]
Eva Lou, A little clarification...I didn't leave my colorectal surgeon...I moved to France and seeing him became a very expensive process although he has never charged me for a visit...I have to fly in for a check-up (about +5000miles) so it was not a monthly thing...when I started to have serious pouch complications and my First French surgeon gave up on me I found a 2nd one (colorectal) who appently was not the most pouch-friendly kinda guy...the surgery was a collosal failure (I could not... [ more ]
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J-Pouch ForumsOstomy & Skin
Having my pouch out and perm ileo was the best thing I ever did for myself. I understand it can be a difficult adjustment, but if your husband sees this as a beginning instead of an end, it will be much easier for both of you. I'm a less is more person on supplies - I use a two piece system so wafer, pouch, eakin seal (moldable ring barrier) and powder when needed and that is it. Paste does a number on my skin. Adhesive preps and removers did too. So I keep it simple. If your husband ever... [ more ]
In regards to ileostomy supplies... best thing to do right now is to make sure he gets a great ostomy nurse(s) working with him in the the hospital. And then always quick access to ostomy nurses once he gets home. Please note that most home "visting nurses" have limited if not zero knowledge about ostomy care. So just make sure he can get in to see an ostomy nurse anytime he needs one. The first month or so takes a bit of trial and error to get appliances/systems that work and can be... [ more ]
Agree with other comments about short bowel issues. I had my pouch excised in mid dec. I basically eat everything, just chew well. Regarding pouches this is really a personal choice issue. Make sure he gets a good stoma one that sticks out 3/4 inch or so and you will have a much easier time in pouching and less leaks and an easier life. A good stoma is critical. I use Coloplast one piece, I have used 2 piece but really dont see much advantage. You can get free samples from the manufacturers. [ more ]
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J-Pouch ForumsOstomy & Skin
Thanks Selma. Useful advice! Drinking after eating is something I was told by the stoma nurse, but easily missed out. I'll certainly do that after anything dry as you suggested. [ more ]
I have blockages after tough corn on the cob, then not enough water with it. Ended up in the hospital with that one and ng tube for four days. I also had problems with a dry pork chop. I massaged the spot since I know where it is now, narrowing due to scar tissue. I just make sure I chew really well and drink water with anything that is dry including sandwiches. [ more ]
You are welcome...Bet you that we have as much if not more snow than you! Just got the most snow ever here in Paris (or next to it!)...the city is paralyzed! Good luck on your end and chew those peaches well! Sharon [ more ]
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J-Pouch ForumsOstomy & Skin
Glad to hear it, Suzy! Thanks for keeping us updated. Best wishes for continued healing and may 2013 be a year full of health and happiness for you! [ more ]
Well, I'm finally back among the living after my ostomy surgery! Drs. Joel Bauer & Steven Gorfine did a great job, and everyone at Mt. Sinai have been great. I didn't understand or appreciate how muh one needs to work with a good Ostomy Nurse, but once I realized the kind of support they give (supply samples, tricks, tips, moral support), I am doing pretty well. I would say (of course!) the hardest thing is doing your own barrier change and having it hold, without leaks for a few days. [ more ]
Great news!! [ more ]
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J-Pouch ForumsOstomy & Skin
I use a great product, I believe it came from America, it is called Na'scent, I get it from my supplier in the uk. I have tried numerous things and this is the only one that has actually worked, when I change my bag I put in 6 drops and that usully lasts the day. It does say you should put drops in everytime you empty , but I find that is not necessary. Shelly x [ more ]
My Ostomy Nurse suggested dropping an Altoid into your bag when emptying. Not quite "minty fresh," but pretty effective! [ more ]
I searched for over 3 years for a solution to the smell and gas .... tried tabs, liquids etc. Nothing worked well. Devrom is the answer. Look it up. Take 2 capsules a few times a day. Smell is GONE. I travel with ease now [ more ]
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J-Pouch ForumsOstomy & Skin
Cataja... I agree. As for digestive speed...Any fruits, fruit juices, liquids including non meaty soups etc if eaten on an empty stomach (like in the morning)go through me in less than an hour. If I eat them with other foods like breads and meats they can take hours. As for the lovely green greens or the bright orange oranges...yup, they come out the same way they went in...fiber, pulp and all. (I like endive/grapfruit salads...I chew well...I get back a full endive/grapefruit salad in... [ more ]
Last week I had a cup of tomato bisque soup...I hadnt even got up to put the cup in the sink when my bag filled with warm liquid...couldn't have been more then 15 minutes...unfortunately I'm not losing weight... [ more ]
Yes, you get nutrients in an hour, believe it or not. But, until your ileostomy fully adapts, you probably need to reduce roughage, at least with a meal, to improve transit time. Or, you can take Imodium. However, if this is just an occasional thing, I would just ignore it unless you are losing weight or are dehydrated. Jan [ more ]
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J-Pouch ForumsOstomy & Skin
J-Pouch ForumsOstomy & Skin
mom3panda, Same issue here.. I tried it 3 times and couldn't get past 3 days. same problem you had waste funneling down an getting right around the base of the stoma and frying the skin, even after running a thin rope of eakin around the base. They sent a ton of samples and other stuff, I feel kinda bad, but it didn't seem to work for me. [ more ]
I tried these a few months ago and found they served like a funnel to direct the waste right down to my skin through the little gaps. I was really hoping they would work, but no luck here. [ more ]
I started using the samples. My normal setup is a coloplast 2pc Sensura system. Lite Convex. Using a small amount of their strip paste. I usually get 4 days wear time. I tried a dermacol sample with that setup. It lasted 3 days and I started having itching. I think I didn’t have a good fit. The dermacol, which is essentially a barrier ring with a collar on top of it plus the lite convex wafer gave it too much convexity. I just changed to a flat wafer along with the dermacol, hoping it will... [ more ]
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J-Pouch ForumsOstomy & Skin
Yeah, Macrobid is an antibiotic, in that it kills bacteria internally, but it is only active in the urinary tract, so is often classified as a urinary antiseptic. I guess it is an old term, and I am dating myself...LOL Jan [ more ]
Thanks for the link, Jan, and for info on Macrobid. My gut flora seems to be returning, so the Macrobid must be working as you described, although in the link, it's not listed as an antiseptic but as an antibiotic. The UTI still may be present, so I'm upping fluid and getting a cranberry supplement. It's been so hard to stay hydrated: I sluice waste through my ileo, and only recently started on sodium bicarb after seeing a nephrologist. That's helped with diarrhea. I take heavy doses of the... [ more ]
Macrobid, a urinary antiseptic, is supposed to act only in the urinary tract, because the kidneys concentrate it there. It is not supposed to alter colon bacteria, I guess becauseit is absorbed before it gets there. Still, it can cause C. diff infections in some people. But, with no colon, maybe your risk of gut flora effect may be higher. I couldn't find much in the way of info about probiotics with Macrobid, but I would think it should be fine to take with it, just space it out from the... [ more ]
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J-Pouch ForumsOstomy & Skin
I"ll echo what Kathy said. Any of the ostomy supply companies will mail you a range of samples for convex wafers to try. They can also help you over the phone - they'll put you right to a stoma nurse. My permanent stoma tilts down like that, and I had to go to a convex wafer. Before I could get that to work, I used a lot of stoma paste in the depression, and I started out powdering, but pretty soon it was evident that the life of the powder was a matter of hours. I've also had extra material... [ more ]
I"ll echo what Kathy said. Any of the ostomy supply companies will mail you a range of samples for convex wafers to try. They can also help you over the phone - they'll put you right to a stoma nurse. My permanent stoma tilts down like that, and I had to go to a convex wafer. Before I could get that to work, I used a lot of stoma paste in the depression, and I started out powdering, but pretty soon it was evident that the life of the powder was a matter of hours. I've also had extra material... [ more ]
I don't really know how to use the rings. I think I have a sample of one but not even sure of that. [ more ]
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J-Pouch ForumsOstomy & Skin
Hey Liz, Honestly, I haven't pursued it yet. I have been through so much, as we all have, and I don't want to hear anything else that could be wrong. Kind of head in the sand right now!! Please keep me informed of your progress. I will keep you in my prayers! [ more ]
sherry I have the same stuff going on... for many months even. But no predisone or pyoderma here. docs are still on a hunt to figure it out. had ileoscope and CT scan, but they can't find anything yet. any results for you? [ more ]
also having a bit of indigestion and reflux...am taking prednisone for Peristomal Pyoderma Gangreosum. Could that be the cause of any or all of this? [ more ]
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J-Pouch ForumsOstomy & Skin
Gmarie, I use the Cymed 1-piece with their extended barrier ring, in conjunction to the Cymed Seals. One of the nice things about the Cymed Seals is that you can order them pre-cut for the diameter of your stoma, so NO stretching necessary. Yes- sticky side down onto my clean, dry skin, then wafer on the 1-piece down over stoma, on top of the seal... I find them MUCH more comfortable than the Eakins, WAY less messy, MUCH easier to apply, more flexible and lower profile. I used to get 2-3... [ more ]
Todd, I noticed you mentioned reply you use Cymed Seals. Which brand do you use for the rest of wafer/pouching system? Do you just stretch the Cymed Seal over the stoma then apply the wafer over it sticky side to the skin. I am not getting much wear time with the other barrier rings. [ more ]
What does that look like? I have a spot right against my stoma that started out as raw, red skin, then started bleeding, and now it looks sort of white. The wax and paste keeps wearing away there, so it keeps getting worse and more painful. I was wondering if it was something like that or just irritation. [ more ]
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J-Pouch ForumsOstomy & Skin
hwr..can you be more specific? I don't know what that is. [ more ]
I have been using a puffer! The kind they use for asthma. It works great. I have skin issues all the time, of one sort or another. This has been a God send for me. It goes on dry so the appliance sticks no problem. I use it until it heals up, stop, then as soon as it starts acting up, I repeat the cycle. Hope this helps. [ more ]
Best of luck Selma. I don't know if life is good with it..I know physically I have improved, but mentally, not so much [ more ]
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J-Pouch ForumsOstomy & Skin
J-Pouch ForumsOstomy & Skin
J-Pouch ForumsOstomy & Skin
I use coloplast and I do like the paste also. I use a convex wafer and the paste. I get skin irritation around the edge of the wafer NOT around my stoma. Will the stoma powder etc. help with that? [ more ]
Which Hollister 2 piece? Convex or not? A week, wow! I am soooo jealous! gmarie [ more ]
I use Hollister two piece cut to fit. I use paste...I know everyone seems to rag on paste but I love how it gives me a good seal. I can get a week on one flange. If I get any skin irritation I use stoma powder and barrier spray. [ more ]
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J-Pouch ForumsOstomy & Skin
itsnotSherry, I just got back from the chiro after a month of such intense back pain (lower back, right sub-iliac)...that I wake up crying...I have been taking 2 naproxine a day and now have added 1000mg of tylenol 2xs day to just get it under control. The pillows help a lot but if I move, even slightly I wake up in horrible pain so I gave in and called my chiro for an emergency apt...turns out that all of the lower back muscles are kinked again and she worked on loosening them up quite a... [ more ]
Thank you Sharon. Your answer is very helpful! [ more ]
Itsnotsherry, I use 3-4 pillows to give my hips, back and shoulders the right support that they need to allow me to sleep...I use a long and dense body pillow that I 'hug' up against my body and throw my top leg over to ease the pressure on my sacrum/coxyx and that helps a lot for the lower back pain. I have a second that I keep low down on the bed that I keep between my feet (when on my side)to maintain the position of non-pressure on the lower back and put under my feet when I turn onto my... [ more ]
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J-Pouch ForumsOstomy & Skin
Laura and Liz - All I can say is WOW! What a ride you both are taken in life! If you see my recent post UC to Crohn's I may be on my way to that however, I have only had j pouch for 5 months. Still trying to heal along w/you guys! Roberta [ more ]
Dear Laura, What a nightmare. Thank you for posting. I've been wondering if I'm going to need my pouch removed or have it disconnected down the road. [ more ]
wow laura.. glad to hear you have turned a corner. Your story sounds similar to mine but with the huge exception that they kept me in the hospital. I couldn't imagine being sent home in the condition you were. That is just awful. I too had told the nurses, fellows, residents, everyone.... that the horrid pain I was in was not normal post op pain... but no one listened. Until my actual surgeon came in one day, listened, immediately did a CT scan, and had me in the operating room in less than... [ more ]
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J-Pouch ForumsOstomy & Skin
I am back to work, which is helping mentally, but exhausting physically. I feel stronger, but by the end of the week, am pooped out. It's better than being home, sitting on the couch crying and feeling sorry for myself! [ more ]
Sherry, Are you back at work and how are you managing? [ more ]
Please ask!! I feel the purpose of this site is to help others thru our own experiences. 1. My surgery took from 2 till 8 pm. The next morning my surgeon came in and told me to walk and chew gum. I looked at him like he was nuts, and didn't walk until the next day. 2. I was on a liquid diet for 2 days, then they went straight to solid, low residue. 3.The second morning, they took dressing off of bottom. I have never bled at all. The tricks I learned were to wear boxer shorts to get air... [ more ]
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J-Pouch ForumsOstomy & Skin
You said it, Sharon! [ more ]
I am a big-mouthed busy-body who cannot stand to see people in pain and would not have a problem going up to the mom, inviting myself in for a tea and say, 'you need help.'...and then giving her all of the help that you can to make her and her son's life liveable from now on...I have yet to meet a mother who would refuse help for a suffering child and this kid is suffering. If he cannot live a normal life, is leaking and stinky then his life is pure hell. And he cannot be happy that way. [ more ]
i agree with Jill. Also, it sounds like they could use extra support and tips on how to make things more manageable....like when you mentioned the house was reeking with odor, he could use drops in his pouch. i even heard tic tacs help, which would be safe for the kid to drop in the pouch. maybe he needs a better ostomy system to help with the leakage so it is reduced, like wear a belt at night. Maybe he needs to also empty more often or set his alarm in the middle of the night so his bag... [ more ]
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J-Pouch ForumsOstomy & Skin
fq.. just saying that the jpouch surgeries are complicated. And I believe that some doctors want to have a successful history of these on their record. Let's just say when I was in Bob's (the original poster) situation and I enquired with my first surgeon about remaining that way.. he pretty much laughed me out of the room and told me how ridiculous that would be and "why would an attractive young female want to spend her life with an ostomy". He continued on saying "jpouches are the gold... [ more ]
i think you should be ok with yearly checkups, i had my ostomy for a long time. liz11 - what do you mean the surgeon might be jpouch happy for his record books?? Isn't that unethical for a doctor to make you stay a certain way when you are happy and the surgical decision is ultimately yours? [ more ]
Interesting. Thanks for your good information! [ more ]
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J-Pouch ForumsOstomy & Skin
I have only had my end ileo about 1.5 months and haven't had any problems eating anything. I chew foods well. What comes out seems well digested. With my J pouch I never had blockage issues but certain foods increased frequency, butt burn etc. and certain foods helped. My diet was restricted. That is the joy of the bag, even if it is loose or acidic it doesn't matter, its "in the bag." [ more ]
Thank you Liz and Winnie. I was so upset I would have to give up on even more food than when I had a jpouch. You gave me great news and hope! [ more ]
I can eat just about everything. I chew it well. Plus always keep grape juice on hand if I have blockage. [ more ]
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Founder, Creative Director & Web Master
William J. Johnson
bjohnson@j-pouch.org
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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Jan Dollar R.N.
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