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J-Pouch ForumsOstomy & Skin
Third stoma help!!
Ashley22Ashley22
TE Marie My stoma nurse has me changing every other day because of the way mine is positioned. I have to use too many rings and things underneath it if I try for longer weartime. All of that is too uncomfortable for me. I am using a one piece convex appliance that is cut to size and easy to put on and take off. My current stoma is my 3rd and hopefully the last one I need. Since it was created 2 months ago I am guessing it is done changing. I don't know when yours was created but maybe it is still... [ more ]
Saff HI Ashley, Do you have a stoma nurse who can help you out with trying different products ? Eakin seals can help also - under the wafer. [ more ]
Lambiepie Hi Ashley, I use bags with convex wafers, barrier rings that "turtleneck" around my stoma, and bag openings that are 1/8th smaller than usual and it helps to keep the skin around my stoma clear. I also change my bag every four days (earlier if I start to itch.) I tried using sticky barrier strips to fill in my skin creases, but they swelled when exposed to moisture and blew the barrier ring right off my skin causing a blowout. [ more ]
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J-Pouch ForumsOstomy & Skin
Fecal enemas for diversion colitis? Anyone tried or heard of this?
SaffSaff
AllyKat Saff, I did the Entyvio before reconnect to make sure it was working. See my signature, I've had multiple horrible surgeries and lots of really bad side effects from meds and surgeries gone wrong. I'm a Drs nightmare. anyway, this second takedown was the easiest thing I ever went thru. So much better than having to remove my pouch. Yes, I'm on a bio but I've learn to accept that something is missing in my genes to warrant it. This is a new drug that only targets the gut so side effects are... [ more ]
Saff Hey Allykat, Yes reconnection its definitely an option - but for me personally, I don't wish to risk multiple surgeries.. I had such a bad time with the Pouch so there's a fair chance it will be similar 2nd time around. If I'm going to do more surgery I think I'll just limit it to the one - pouch removal. I think I'm just going to gather my strength, and get off prednisone before I do it. I'm glad entyvio worked for you.. [ more ]
AllyKat Um? Why don't you just reconnect? I had this issue and actually the fatty acid enemas worked to a certain degree. I was then put in Entyvio and my pouch pretty much cleared up by takedown. It been fine since. Ps I did try fecal transplant with my son as a donor when I had pouchitis but it did nothing for it. [ more ]
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J-Pouch ForumsOstomy & Skin
Pouchitis/ diversion colitis and arthritis
SaffSaff
AllyKat I'm using Entyvio and it's working for my pouchitis. I almost lost my pouch. Had to go back to a ostomy for a while but have been reconnected again. Check it out and good luck to all [ more ]
Saff Hi Liz, yes it seems like a lot of us have various forms of athritis... From my research it seems that medical world are still trying to work it out ... the main correlations seem to be between genetics and gut bacteria ... The research in this area is really growing so hopefully we know more soon. My arthritis started several years after taking prednisone so I'm not sure if it's linked .. [ more ]
Ljz I, too, developed arthritis after jpouch surgery. Actually, I was on heavy doses of prednisone shortly after takedown due to Cuffutis and bleeding, and completed a 10 month taper to get off of it (Some setbacks in between), and noticed the arthritis at the end of taper. Been off Prednisone completely for 3 months now, and still struggling with arthritis. My rheumatologist prescribed Sulfasalazine in February, and agreed to increasing it a week ago (4 tablets of 500 mg.each) but still... [ more ]
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J-Pouch ForumsOstomy & Skin
I'm scared, tentative surgical date for j-pouch removal
TE MarieTE Marie
Angie Wilson Keep it up TE!! So proud of you - I'm glad to hear from you. Why we have to wait so long to get the anti biotic or whatever it is drives me nuts - but then I realize it's "a system" and there are many others in line calling a doctor, etc. I remember years ago - when I had my pouch surgery - things were so different - I got instant help for anything. One call to doctor's nurse and I got help - well, that was 1987 - and healthcare was so different then. I feel like now doctors (many of them)... [ more ]
TE Marie I forgot to post that the day after the Urology NP suggested P.T. her office called me saying that I did have a bladder infection and she'd called in an antibiotic prescription. I finished taking it a few days ago and hope my recovery continues. A few steps forward then one backward..... [ more ]
Angie Wilson Yep - one day at a time. OH- how the mind wants to figure out the future - especially when one is ill, etc. Hang in there, TE! [ more ]
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J-Pouch ForumsOstomy & Skin
Flush stoma
M Momma
Saff I use eakin seal with a convex wafer - I think it would be worth trying. [ more ]
Lambiepie Good advice, Jan. Momma, I would suggest trying different convex wafers as they're not all the same. Marlen makes a bag with a very deep convex wafer. A belt hooked onto the bag pulls the wafer tighter to your body and can prevent output from seeping under the ring. When you wear a belt, the bag has to hang straight down, though, so the loops that the belt attaches to are even - 9:00 and 3:00 (I wear my bag angled towards my body so the belt loops 10:00 and 4:00 and, when I wore a belt, it... [ more ]
Jan Dollar I'd use the Eakins seals with the convex. People here have had really good luck with them. You may also want to look into an ostomy belt to make sure the flange stays put. Jan [ more ]
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J-Pouch ForumsOstomy & Skin
pouch-to-ileostomy : to leave the pouch or to remove it ? (that is the question :-))
A Arnaud
Saff I should also add that my diverted pouch is no longer so settled. It was ok for the first four years of disconnection, then in the last 1.5 years I've had increased discharge, pain and blood. Now looking at removal. [ more ]
Donna H These posts are from a long time ago but thought i would chime in. I have a loop ileo and my j-pouch had so much scar tissue around it that i could not be removed. I have had the ileo for 2 1/2 years and the leakage lately is terrible. I am looking for a solution but so far what the dr has ordered did nothing. I hate the thought of having this huge inconvenience forever. [ more ]
Pouchomarx is it ok to continue with a loop, or is it best to go with perm end? is one better than the other? if there is any chance that i may want to hook back up again should i stay with the loop? [ more ]
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J-Pouch ForumsOstomy & Skin
End vs Loop Ileostomy
M Momma
Mysticobra I have an end ileo. I empty 8 to 10 times a day. But what it depends on is how often I eat. If I eat a big meal I am guaranteed to have to empty at least three times starting about an hour after eating. If I eat light.... Boy... I could go half the day without an empty. But... ... I sure do enjoy eating anything I want again... That's the good part. Well one of em. I could go on but I won't. Hopefully he won't have it long enough as said above. All depends on your eating habits and I am sure... [ more ]
Starry01 I have a loop for a year this week. I empty probably 8-10 times in a 24 hour day. Liquid output. But no pain and with odor drops no embarrassment or issues like before. I wouldn't go back. I do not know anything about an end ostomy. [ more ]
Jan Dollar A loop ileo is usually a higher output ostomy than the end because less of the small intestine is available for digestion. It should improve with time, but if you have only a few weeks or months, there may not be enough time for this adaptation. Jan [ more ]
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J-Pouch ForumsOstomy & Skin
Fungal Rash/Allergic Reaction
caityohcaityoh
Saff Hi Caityoh, I did experience that once also - my nurse suggested taking some time when you get up in the morning (when there is little activity down there) to remove pouch, have a wash, then apply some anti fungal cream - and leave the pouch off for as long as you can - i think I did it for 20-30 min before washing off and putting pouch back on. I used canesten cream - an antifungal. That worked for me, [ more ]
Lambiepie Hey Caityoh, did a nurse suggest antifungal powder? I've heard about it on here, ordered it when I had my temp loop ileo five years ago but never got around to using it. Maybe leaving your appliance off and airing out your skin? Also, it might help to contact Hollister directly and ask for advice and suggestions. [ more ]
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J-Pouch ForumsOstomy & Skin
Revision
F Fosty
Fosty Thanks guys. The reason was I had so much scar tissue and it was a hard surgery excising the pouch etc she couldn't pull the bowel any further so hence revision. She's one of the best in Canada so was comfortable with the explanation. Lynn [ more ]
Jan Dollar Sometimes stomas retract when they mature if they don't heal right. It happens. Best to get it fixed or you'll never get a good seal with your appliance. For a temporary ileo they let it ride and you just deal with it, but not with a permanent one. Jan [ more ]
Mysticobra Never had a revision but you do want it out further. Wonder why they didn't have it out further the first time is the question. Just wondering. Less skin issues If it is out further. Well worth it. Mine sticks out at least an inch and works like a charm! Richard. [ more ]
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J-Pouch ForumsOstomy & Skin
underwear and "covers"
GinLynGinLyn
GinLyn Oh, I SO LOVE being able to ask real questions here! Thanks, you all. Sharon, thanks for the offer, and the bodysuit idea is a great one. Will definitely check into that. Do you have a line/brand you really like? They sound perfect for layering as well. I think I've found enough underwear to do for a while, thanks to Hema (the basic Dutch department store I mentioned). I also scored some stretchy tank undershirts which offer some good protection as well as a bit of support; been liking them... [ more ]
TE Marie Please look on "Etsy". Look under maternity bands and you can find anything you would like made out of many different materials. I bought a 3 pack and picked from many different colors. They cover as described above and aren't pricey. There are several vendors carrying them. I also purchased just the bag covers there as well. If I sweat along with the warm output the bag against my skin smells It is probably the brand of bag I am using but I am stuck with it as the wafer is the best for me. [ more ]
Lambiepie I like that one piece idea, Sharon. Also, Gin, the lingerie website I was thinking of is vblush.com. [ more ]
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J-Pouch ForumsOstomy & Skin
Abdominal pain - stricture or diversion colitis?
SaffSaff
Saff Hey Te Marie, I think I am not far behind you. But I can see from your new post that you have scheduled a date for the surgery so you are a step ahead. After so much surgery already, its not easy electing for more is it! I hope it goes as well as possible for you and I will follow your post to hear how you are going. [ more ]
TE Marie SAFF and all, I am going to contact my surgeon to have my j-pouch removed. She suggested it before the diversion surgery but I was hoping to avoid that. I have had 5-6 rounds of antibiotics for UTI's since my surgery 8/31. I kept attributing my abdominal pain to them and not my j-pouch. Now I know my j-pouch is causing the pain as the UTI appears to be finally gone and I'm still in pain. It's like I still am using my j-pouch, except I don't have to give myself enemas. I have been taking... [ more ]
Saff HI Dewyj and Te Marie, sorry I didn't respond earlier - I've been away but thanks for your responses. Yes DEWJY it is a long time to have diverted pouch, I'm really just postponing the surgery to have it removed. I had hoped I wouldn't need to do it, but my surgeon thinks it may be better to take it out. He did release the stricture recently when he did a scope (which I think involves cutting it). I am just trying to understand what could be causing the ongoingy pain. But its interesting to... [ more ]
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J-Pouch ForumsOstomy & Skin
Hair
JeffmichJeffmich
Kushami P.S. I don't think it would be advisable to have laser treatment once you have your stoma. The skin in that area is usually sensitised by the adhesives etc., and adding a sunburn-like trauma might be too much stress. [ more ]
Kushami Hello Jeff, I have had laser hair removal (underarms - for cosmetic reasons). If you have dark hair on pale skin, it is effective. It is unfortunately painful as well, but on a small area it is over in five minutes. You can get a numbing cream to apply beforehand that works well. Afterwards, you need to be careful with the skin - treat it gently and no hot showers - as if you had sunburn. I found that waxing caused ingrown hairs. (It didn't matter how the hair was pulled out - waxing,... [ more ]
Mysticobra I don't have many so I just shave or trim them with a Remington trimmer. Laser? You'd have to have the appliance off for that it's seems. Waxing...never done it but seems like it would do more harm..... remove the hair and the follicle would be open ?..... It Would be open and you would have to put the wafer over it. I don't know. I just shave it. But I am lucky to have a half dozen hairs around it. Richard [ more ]
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J-Pouch ForumsOstomy & Skin
Question on wafer.. flange.
MysticobraMysticobra
Caty Again, less is more. No need to do anything special when in the shower. Wear your appliance in the shower or leave it off on change day and take a great shower without it. There's special adhesive properties in the tape around the flange and it doesn't mind water at all. Just let it dry naturally when out of the shower OR use a hair dryer on low heat and a tissue to wipe off excess water. Don't let the dryer get too close to the bag; it will leave melt marks on it. Keep the dryer about six... [ more ]
TE Marie I use Press and Seal wrap and waterproof tape when I do cover it up. That is usually when taking a bath to shave my legs, which I assume you don't need to do. My baths are shallow so the water doesn't come up and soak it. Then I use a blow dryer on air with no heat to dry it. But usually I don't need to. I've been timing my showers to coincide with my changes and it feels great! I watched u-tubes. The Press and Seal with waterproof tape is from one on there. The tape is very expensive and I... [ more ]
Mysticobra I changed Sunday. Fifth day. I do notice it comes off alot easier after a longer period of wear. At the beginning of last week I had to do a change the same day cause it just did not feel right and I didn't want to go to work regretting it. But boy after just a few hours on it was tough to get off. It was stuck like superglue. I used a barrier wipe to help it off. Took awhile as compared to yesterday... It just peeled right off. I do not want to damage the skin around it and keep your time... [ more ]
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J-Pouch ForumsOstomy & Skin
1 month post pouch removal
IJ ISU Jed
Mysticobra For all who are on the ileo side. Including me. Welcome. Life is good again. Pain and worry free. And I had both... Now. I have neither I still don't like change day. But that time will come where it's nothing but a chore. Today was change day. Sunday and Thursday... Providing no problems arise. Half hour of time... Including a good shower. Richard. [ more ]
TE Marie I appreciate having this thread to read. Big plus for this support group it the ability to do so. My ileostomy is ok but my surgeon was right. I should have had my j-pouch removed along with my ileostomy back in 8/31/15. I'm scheduled for removal of my j-pouch and anus on 3/24. They scheduled me for the first day she has open as she doesn't do other surgeries the day she does these. At least I am use to the ileostomy and she's already been in there and lysed my adhesions. My ileo surgery... [ more ]
LORI726 As someone who is going to need future J pouch removal, thanks for all the info! Is there any place they can't stick a tube?!? [ more ]
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J-Pouch ForumsOstomy & Skin
What's With This Paper Thin, Non-Perforated Toilet Paper?
LambiepieLambiepie
Mysticobra Yep... I work outside. Two pairs of longjohns. Coveralls. Sweatshirt. And a heavy jacket. But... It's better now without a pouch. I go less often that's for sure. But sometimes it's hard to tell how full it is under all that. Ha... Sometimes I go get all that off and nothing is in there. Felt like it. But all that off and on wears ya down when your not in tip top shape after all that has happened. But I am getting the routine down pretty good. All I need is a bottle to rinse. Toilet paper of... [ more ]
Lambiepie Bill, you've got a point. I guess it's all in the perspective. Richard, I do the prep work, too, but it's exhausting, especially in the winter when clothing is thicker and layered. My FRIENDS use this TP, too. They have colons. [ more ]
Mysticobra I know exactly what you mean. They use it where I work! Terrible. I need three arms! But seeing how that won't happen I just tear some up prior to doing my business. But... You have to check first to see what's there. Just another step NOT to forget. Lol. It is a bit frustrating I must say. Richard. [ more ]
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J-Pouch ForumsOstomy & Skin
SIBO and ostomy
AllyKatAllyKat
JLH my tea for settling tummy aches contains spearmint, ginger, peppermint and some other nice flavors. not that tea can combat sibo, but it is somewhat of a confirmation that mints and ginger are tummy friendly. my understanding was that one's sibo shouldn't be an issue if there is no longer a reservoir--that being either a j or k pouch. apparently one can also get sibo with a colon. from my experience--for what it's worth, as i am but one person and everybody is different--i never had sibo w a... [ more ]
LisaTX USA I use peppermint oil capsules to control the gas due to SIBO. I take about 8-12 through out the day. They work great. They don't eliminate the gas completely, but it certainly makes a huge difference. They are much cheaper on Amazon. [ more ]
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J-Pouch ForumsOstomy & Skin
Passing stool and c.diff after diverting to perm. Ileo??
TE MarieTE Marie
TE Marie Thanks for asking I'm feeling better but have a long way to go. I use to have mild UTI'S. The first time I went to an ER for pain it turned out to be a UTI. I told the doctor I was embarrassed and she said they get a lot of UTI'S there. [ more ]
deweyj how are you feeling? If youre still in pain I hope you've reached out to surgeon? lol that's a good saying of your dad's. I hear UTI's can be nerve wracking. [ more ]
TE Marie I think your are right DEWEYJ. I'm not going to email my surgeon until I get the c.diff test results and wait for more "evidence" of stools. I was upset earlier and needed to chill. I am not at death's door! My dad says "if it wasn't for bad luck we'd have no luck at all" and he's still here at 84 I just ordered test strips so I can test myself for UTIs. Dah, you can get glucose testing strips so I should have made this connection sooner - like 15 years ago. [ more ]
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J-Pouch ForumsOstomy & Skin
Smelly Fish Oil
R Randybw1
TE Marie In the past I could taste that fishy stuff after taking them. I am taking a different brand that is orderless and tasteless. It is OTC and probably different from what your doctor ordered. Can you ask him for a different selection/brand? There are some foods that make my j-pouch smell awful. I just bought some tic tacs and am slipping them in my pouch when eating something I think will stink. I'm glad you mentioned they were good for triglycerides. My brand is to be taken twice daily and... [ more ]
Lambiepie Whew, I was thinking how bad that would be! Try the mouthwash in the bag. I've gotten to where I don't even smell my own smell. Sometimes I'll re-enter the bathroom shortly after emptying and think, "Ugh, is it really this bad? I had no idea!" [ more ]
Randybw1 Sorry, I didn't smell like Poo before, just when I emptied....No smell at all before. [ more ]
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J-Pouch ForumsOstomy & Skin
Barbie Butt But Burning Sensation
LambiepieLambiepie
Lambiepie JLH, I asked him if I did anything wrong, didn't clean well enough, etc....he said no, that there could be a tiny opening in the rectal incision and it could fester for awhile. He cultured it and ordered Cipro. It's really ok, it was one day of pain and at least I know why. I get only the minutest amount of phantom feelings and rarely at that, if I'm really full! Aside from this abscess, I've never had pain. What a blessing! [ more ]
JLH lambie did the doc have any explanation as to why you developed the abscess? is it an infection and is so where? so sorry you had to go through this. i've gotten off easier with the phantom reactions--no pain, just strange feeling!! be well, jlh [ more ]
Angie Wilson So sorry your Barbie butt hit a glitch and I'm glad you found a fast, relatively easy fix. Fosty - I will be thinking of you as you revert and hope it goes as easily as possible. I tend to think things will be awful, and that way, I'm pleasantly surprised if they are easier. This is after years of "oh, it won't be too bad" and then it was bad I just try to be realistic and I find procedures and ups and downs are a bit easier to take from an emotional standpoint. Let us know when you are up... [ more ]
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J-Pouch ForumsOstomy & Skin
New Milo Convex
AllyKatAllyKat
Lambiepie I use "Skin Barrier Ring Conforming Seals." They turtleneck around the stoma and provide a snug fit. I use those and I went down an eighth of an inch in size in my bag opening and my skin has never looked better. No skin breakdown at all. I came to this system ten months after my surgery so it pays to keep trying new products until we find what works for us. [ more ]
Fosty Thanks again Richard !! �� [ more ]
Mysticobra Fosty. Worry will be there. Until you are done. I had my pouch removed November 9th. Almost two months now. I worried like crazy. I had a horrible night mare experience getting the pouch. This surgery was so easy compared to that. And that was what I was worried about. All that I went through to get the pouch. I had nothing but pain.. Urgency... And of course like you say how am I gonna do today? It was still painful but for only a week... Or more.. And it calmed down fast. I was so... [ more ]
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J-Pouch ForumsOstomy & Skin
First blowout....
LambiepieLambiepie
Lambiepie Haha TEMarie, definitely wear them! I've used an earring more than once for repoking a hole in my EZ Osto vent, but never for the bag opening itself. I guess I am like MacGyver!.......I never sensed an odor even with the warmest, most liquidy output but I do have bag covers, probably the same as the ones you're using and I love them. I've gotten lazy lately and haven't put one on in awhile but your comment reminded me how much I like them. So soft and pretty. [ more ]
TE Marie Bravo! I need to start wearing earrings again. Something off subject a bit. You mentioned the warm feeling and I had a problem with the bags heating up against my skin. It smelled to me. Same way with bag filters. I found a solution that helps against the smell and adds another layer of protection, Ostomy bag covers. I buy them off of "etsy". There are several vendors. I pick out different fabrics and they are sent no postage, from the lady I buy from, in a small heavy duty envelope. I've... [ more ]
Angie Wilson You go girl!! [ more ]
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J-Pouch ForumsOstomy & Skin
large distal with loop ileo
PouchomarxPouchomarx
TE Marie I have a permanent one that my stoma nurse thought was a loop as it spews downward vs out of the top. I hope that made sense. It's smaller than my loop one was. Even though it is less than perfect it works much better than my loop. This is not what you asked but I am wondering if the direction the spew is coming out of your current one might be the difference. [ more ]
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J-Pouch ForumsOstomy & Skin
Stoma retracted / closing over
M Mark01
Jan Dollar By "removing the pouch" I hope you mean reversing the ileostomy, NOT removing your j-pouch! However, if that is what you mean and you were disconnected due to your Crohn's (got that from your profile), then maybe a revision is what you do need. Your first post did not explain the reason for the diversion. If your end goal is to have the ileostomy permanently, then an end ileostomy is far better than the loop. You can have an end ileostomy and leave the j-pouch in place, but in the long run... [ more ]
Mark01 Yea I'm doing fine at the minute and I had the option of disconnect or removal before my last surgery and I chose disconnect because it was a smaller surgery with less risks. I have an appointment in 2 weeks so I'll say to him about removing the pouch and see What he thinks. Thanks for the reply [ more ]
Jan Dollar So, how are you doing with a basically fully functioning j-pouch? If you are OK, I don't see the point in revising the ileostomy in a month. Why not just have the take-down and be done with it? Seems like a potentially unnecessary surgery to redo it at this point. Retracting stomas are pretty common, but I don't know about them closing over. Jan [ more ]
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J-Pouch ForumsOstomy & Skin
Any one have a diverted jpouch
AllyKatAllyKat
AllyKat Staff, so I reconnected last Thursday. I also had my ostomy for chronic pouchitis. I am doing Entvyio infusions to keep my pouch healthy. It's still too soon but I'm hopeful. I rather go that route. then go thru pouch removal. You might want to try fatty acid suppositories. They helped a lot as well. I honestly didn't think I be in so much pain, nauseau, gerd, sour taste, etc. The pouch seems to be working fine. My surgeon did a scope and found minimal inflamation before he proceeded. [ more ]
Saff HI Allykat, Yes I am I the same boat.. my pouch was diverted in 2010 and I was fine with it like that until about a year ago - now I have ongoing diversion colitis with pain, and leakage. I am slowly working on accepting the final surgery - removing of the pouch and all. Let us know how you go.. [ more ]
LORI726 On phone and can't see dialogs with this new format!! Big surgery today!! You are in my thoughts and prayers. Hoping everything goes well and your pouch is happy, happy, happy :-) [ more ]
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J-Pouch ForumsOstomy & Skin
jpouch to temp ileostomy: major anal discharge problems
E elooney
TE Marie Hopefully he is doing better. I was diverted to a permanent ileostomy 8/31/15. I had many chronic problems and my j-pouch never did work like it should. I didn't want another ileostomy as my temp one was a nightmare. My surgeon at Mayo's suggested excising it and going to a permanent ileostomy. I was not up to that reovery, mentally, so she agreed to divert to a permanent ileostomy. I don’t understand surgeons that won't let people have these surgeries. It is probably because none of mine... [ more ]
Saff Hi Elooney, I'm sorry that your partners discharge kicked in so early... I had my disconnection in early - and was good for 4 years or so, but now have constant issues with discharge sadly. And yes it very frustrating, I understand that there are no reliable treatment options. Enemas with fatty acid may help short term, but I'm not sure they are a long term option. I wish I knew the answer also. [ more ]
AllyKat My recovery for this temp Ileo has also been hard. Physically and mentally. It was done lapro so I was taken by surprise it was so hard. I also had a Ileo for a year 15 years ago so mentally that surprised me as well. I think some of the physical had to do with my age 63, and the inflamation. I too said no more surgeries but I so hate this bag, and now that I have this diversion stuff thrown into the mix, pouch removal oh no no no that's one surgery that I don't think I can ever do, so my... [ more ]
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J-Pouch ForumsOstomy & Skin
Wafer without tape?
S Starry01
TE Marie I ordered samples of Sure Seals too. I love Coloplast's but my skin broke out the last few times I used them and I love them. I cut off most of the flange of a Coloplast sample wafer, as they are too large, and the smile like shape ones were great. I haven't tried a true wafer without tape yet, just this self styled one. I'm currently using Convatec convex 2 piece ones. Good Luck everyone. [ more ]
Starry01 Thanks for the suggestion of sure seals. I've seen them but never tried them. So glad that works so well for you. I received the coloplast samples this weekend but didn't use them yet bc I have meetings and training sessions all week at work. My hope is to try the first one Thursday since I would be able to come home if needed Thursday or Friday. I may even wait to order some sure seals just in case. [ more ]
Mysticobra I am getting some from all manufacturers. I have to try different ones cause the skin is getting irritated. Not from leakage but I think from using the same thing all the time. It may be the adhesive used by different companies. I don't know. I am new to this and I think... Think trying different ones is the way to go to see what is the right most comfortable fit with the least irritation. But I really like the soft materials some are made of. Question for some who have wore an appliance for... [ more ]
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J-Pouch ForumsOstomy & Skin
Probable reversal
heverhever
hever Thanks Bunny Lady, yes it is a serious decision, but the pain the J pouch, or rather the rectal area is causing makes me want to rip it all out right now. If the cause of the pain can't be rectified then i'm reversing, real sick of all this drama after years of pain. Its great to hear the products have improved!!! I think like you that I have waited too long for reversal, putting off going back to the illeo,but unless I get some good answers next week from my specialist I want to be reversed... [ more ]
Bunny Lady I had J Pouch in 1994, lived with pouchitis for about 18 years. Frequency and pain became unbearable and in 2014 had reversal to permanent ileostomy. It took me about about 1 year to adapt. I also had ileostomy (temporary) in 1992 and the products have dramatically improved since then. It's a permanent and very serious decision to make, not to be taken lightly. It has changed my life, I waited too long to have the reversal. [ more ]
hever Thanks Jan, hopefully the reversal will be successful, worried bout getting a fistula like some people have but can't really see what choice I have now. Anyway i'll see what the specialist says in a couple of weeks Heather [ more ]
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J-Pouch ForumsOstomy & Skin
what cream or paste to use ? ? ?
Mdz122Mdz122
TE Marie Hi Mike, I'm having a difficult time and am wondering if the Ilex worked for you. Does the skin around anyone's stoma improve using Ilex. [ more ]
Jan Dollar This really sounds fungal. Rather than make things worse, I'd see the doctor and get something prescription. Ilex is great for healing excoriation from leakage (like super diaper rash), but if you have an infection, you need something else. I'd call the doctor. Jan [ more ]
Mdz122 Originally Posted by Jan Dollar: Maybe you need to stay away from those barriers that lock in moisture as much as locking it out. Try an antifungal powder like Zeozorb or Caldesene. But, if you are really wicked excoriated, then Ilex is your go-to. Jan Jan, I tried the Caldesene powder and it didn't seem to help much. I went back to trying Destin again because I was told the zinc is really what you want. Everything down in my crouch area is red, there is no normal looking skin. All of it is... [ more ]
See all 5 replies...
J-Pouch ForumsOstomy & Skin
What happens after J pouch diversion?
LORI726LORI726
Mysticobra I just got two pairs of men's underwear from OS... I can tell they will not help as you said it looks like it will not support the bag at all. It's just a low pocket that goes along the whole front of the underwear. I thought it may have a actual pocket on one side or the other to stuff the bag in. Generic pockets I am gonna send em back for that price. Besides my wife bought medium. I am so skinny the smalls I wear are almost too big. So I know... Even though my wife insists I try them... [ more ]
TE Marie I understand Lori. I have fibromyalgia and when I have to wear a belt hooked to my bag or pants that mess with my bag it drives me nuts. I have a hard time with the plastic bag against my skin too. I bought some bag covers from someone on etsy. There are several folks there that make them. The best one I have is made out of a light flannel material. They cost is approximately $10. Lot cheaper than $25 for a pair of undies from Ostomy Secrets. I learned that those with fibro feel the same... [ more ]
LORI726 I am already wearing the crazy expensive ostomy secrets underwear and still feel the bag hanging....grrrr. Don't know why I am having such issues with this. Will keep trying new things and looking at the possible options. Thanks again everyone. I am glad you aren't' wearing grandmas Richard...hahaha [ more ]
See all 16 replies...
J-Pouch ForumsOstomy & Skin
Question
MysticobraMysticobra
Mysticobra Thank you. I can go 4 to five days without a change but I am gonna do a few 4 day changes just to look at it and see how the healing is coming along. Also to take pics for the surgeon to see. I don't want to change bags in the office. I will be in a hurry and when I am I will leak or something. The skin is not really irritated per say. I can feel it but as you can see in the pic it's just pulled away. I will make sure it's nice and clean before I put the wafer on. I really don't have powder... [ more ]
Lambiepie Richard, glad to hear you are adjusting well! My understanding is that you only use powder if you're having a skin issue. Don't forget to put skin barrier liquid over the powder and always end with the liquid, not powder. Also, change more often if skin around stoma is irritated or broken down; change less often if skin under barrier is irritated (because you don't want to be ripping tape off irritated skin.) In January, I will have had my perm ileo for a year and I am still discovering what... [ more ]
Mysticobra Thanks Caty. I don't think I will worry too much about it now then. I use the Hollister soft wafer. I find them very comfortable and hardly noticeable. I think by the time it heals I won't or I will forget I m even wearing it. Right now I feel where it is bit tender. That's all. I talked to the surgeon about it but she was not too concerned as it is as you can see not all irritated and red or anything. So it's good to know it will be OK. I have to give it time. So far I am happy with my... [ more ]
See all 4 replies...
J-Pouch ForumsOstomy & Skin
How long did it take you to master ileo bag wearing?
TE MarieTE Marie
TE Marie I agree we have to make what we have decided upon work. There aren't anymore choices for me. I am going to have to go to a pain management doctor as the lysing of my adhesions and shutting down of my j-pouch has not gotten rid of my pain. The medication I have been taking for 5 years either isn't strong enough as I have more pain or I am needing more because I have built up a tolerance. That is a slippery slope. Dependence is there but not addiction, I don't think. I am putting up with more... [ more ]
Mysticobra That is good news Janet. We all have to be so strong to get through any of this. You sound like your doing well. I know it's not one hundred percent. But we have to make it work. Keep us up on things. Especially good news! Richard. [ more ]
TE Marie Great news Janet! [ more ]
See all 75 replies...
J-Pouch ForumsOstomy & Skin
Convatec
SH shawne h
TE Marie I started out with Hollister and am using Convatec too. I have tried a few other kinds at my stoma nurses suggestion and am sticking with Convatec. I have a lumpy abdomen so have found using the slim Coloplast thinner barrier rings help it stay on longer. In my case I cut it in half and put it directly under my stoma before putting on the wafer. Have you tried to use a Metamucil to thicken your output? I use it when my output gets too thin. I use the generic gelcaps as I don't like drinking... [ more ]
Caty Shawne, I've been using Convatec moldable wafers since 2007 with great results. They hold up very well. I have liquid output and I'm able to wear these wafers up to five days. Caty [ more ]
See all 2 replies...
J-Pouch ForumsOstomy & Skin
digesting multivitamins ??
PouchomarxPouchomarx
skn69 I bought a pill crusher and use it when needed with certain meds and vitamins..Beware though, certain things do not like being crushed..They tend to upset your stomach especially certain vitamins (B's and zinc for me) so test them on the weekend. Sharon [ more ]
nikiki I chew my vitamin, or get a chewable. If pills are large, whatever they are, I always ask the pharmacist if I can chew them to increase absorption and decrease obstruction risk. [ more ]
Mysticobra It was suggested I take a multivitamin also. I think this has caused severe rear end burn. The worst I have had. It is continuous and does not let up. Most times I have BB it subsides some after a bm. But this just stays strong no matter how much I clean or grease. Has anyone else experienced this? I posted this elsewhere so you are not seeing double. Just wondering. [ more ]
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J-Pouch ForumsOstomy & Skin
Pouch cover
SH shawne h
Lambiepie I don't know if she has any restrictions. I paid with my Visa card. You can ask her questions via her Etsy account before ordering. [ more ]
shawne h Thanks appreciate your reply does she take m/o or cheque? [ more ]
Lambiepie Shawne, sorry about your ostomy troubles. I hope you get them under control soon..... I ordered pouch covers per a suggestion from another member. I have five of them, they're handmade and very comfortable. They come with snap or Velcro closure. She sells them out of Ontario. The website is https://www.etsy.com/ca/shop/BagsUndercover [ more ]
See all 3 replies...
J-Pouch ForumsOstomy & Skin
Leaking! what products work for you? Help
AllyKatAllyKat
Lambiepie Originally Posted by AllyKat: I use the glad press and seal. Sometimes a little gets in but today it was dry. Just fold the bag in half and press it down onto your skin. Just showered with only press and seal covering my bag, no tape, and it stayed pretty dry. Thanks, AllyKat! [ more ]
Lambiepie Wow, so simple AllyKat. I'll try this, thanks. Hope you're doing at least a little better. [ more ]
AllyKat I use the glad press and seal. Sometimes a little gets in but today it was dry. Just fold the bag in half and press it down onto your skin. [ more ]
See all 24 replies...
J-Pouch ForumsOstomy & Skin
big leakage problems
DH Donna H
Donna H For some reason i am going on my 3rd day today. I've done nothing different and no leaks. I wonder if diet has anything to do with it. [ more ]
AllyKat My stoma is also an inch away from my belly button. That is not my problem, I have dips when I sit at the 3 and 9 o'clock position. My leakage is under the flange, only once going onto the paper. I too have no idea how to stop it and the only way I know is when I change, thus doing havoc to my skin. I thried the rings the last time, everything seemed good, waited 4 days and when I took it off, stool under the flange on the rings! [ more ]
Donna H Lambiepie, I had my surgery just about two years ago out of the area so it is not easy to get an ostomy nurse. I have talked to many in the past and was in the hospital for an ostomy revision in May actually. My stoma had retracted on the bottom so it was flush with my belly. It took awhile to heal and it was better at first but now problems again. I am going through so many supplies - it's crazy. [ more ]
See all 8 replies...
J-Pouch ForumsOstomy & Skin
Maintenance meds post j pouch removal?
LORI726LORI726
LORI726 Thanks LHetti! No drugs sounds like a dream.... May you have continued intestinal happiness!! [ more ]
LHetti I had my jpouch removed and my dx was Crohn's (fistulas, abcesses, 4cm mass next the pouch). I take nothing. It's amazing! No new issues and I hope it stays this way! I've not had any issues with my small bowel, so no need for medication. [ more ]
TE Marie Thanks for asking Lori. My surgeon is leaving my j-pouch in. I am not emotionally able to handle that big removal operation at this time. Plus this is what she suggested. I was hoping I was hoping to have the option of getting an operation to get rid of my cuff and advance the pouch down. She said that wouldn't help as my pouch is not working. She suspects pelvic floor dysfunction. I am sad but she is probably right. After she dilated me under anesthesia it didn't improve much. I have... [ more ]
See all 23 replies...
J-Pouch ForumsOstomy & Skin
Exercise with an ostomy?
S Starry01
AllyKat I'm eating thicken foods and Ensure plus. I guess my body is still healing. I think it will be a while befire I head back to the gym Unfortunately. I'm not recovering very quickly and it's so Fustrating to be tired all the Time from simple stuff. [ more ]
Lambiepie Ally, I have an end ileo so my output isn't liquid (unless I eat ice cream or drink a lot at one time.) I hold onto food much longer with the end than the loop. I was very underweight with my temporary loop ileo five years ago and throughout my five years with my jpouch. I gained five pounds about one month after my last surgery and am holding although I eat a lot (it took me at least six weeks to feel comfortable eating anything.) I teach exercise classes to older seniors so it's not very... [ more ]
Jan Dollar Exercise can help you GAIN weight, because it helps build muscle. You don't build much skeletal muscle just laying around. Jan [ more ]
See all 10 replies...
J-Pouch ForumsOstomy & Skin
rectal irritation
SaffSaff
AllyKat I wonder why my surgeon gave me a loop and not an end? Can u reconnect with a end? Would u ever consider it again? I would ask your surgeon for some meds like Canassa or fatty acid enemas. [ more ]
Saff Hey all, thanks for your responses, I did have my pouch disconnected 5 years ago due to pouchitis. I have been good since then, but after reading some posts on the forum I think I have either diversion pouchitis / colitis or cuffitis . I hope I can find a way to manage this without needing to remove it with another surgery. I actually have an end ileo - not a loop. I don't have trouble with calories - but if I were you I'd seek help from a dietician. Thumprhare - Im not sure this is period... [ more ]
AllyKat Saff, I get this a lot, Why were you just discounted? Had emergecry surgery due to bad pouchitis. Im assuming you have a loop like me. Im having real issues. I have to wear convec to stop leaking which is not comfortable. I can't get enough calories into me this is a real problem Any help would be appreciated thanks [ more ]
See all 6 replies...
J-Pouch ForumsOstomy & Skin
R u happy?
AllyKatAllyKat
TE Marie Thanks for all of your replies. My surgery was just set for 8/31 and it's just for a permenant end ileostomy. All of your positive replys have made the decision easier. I told my surgeon that things are so bad I would even take my temporary stoma back. I had a very difficult time with it. Dehydration problems kept me in the hospital for 16 days after my first surgery. Thanks for asking the questions AllyKat. I hope you are feeling better. [ more ]
Saff HI Allykat I think I have had much more freedom since having my ileo - I'm much more able to do things and live an active life. I was toilet bound before and quite limited which was much worse. I think you'll find that you settle into a routine and it will get easier. I hope you find that. [ more ]
TE Marie Hi AlyKat - I promise I'm not stalking you around the group! Thanks for asking questions that I want to learn about too. Thanks for your helpful replies PoucherinTO and liz11. I'm trying to be proactive as an ileostomy might be in my near future as well. [ more ]
See all 11 replies...
J-Pouch ForumsOstomy & Skin
Has your j pouch been removed?
S Starry01
Starry01 I think a colorectal sirgeon should be seen. I travelled 12 hours to Cleveland clinic for surgery for the ostomy and will do the same for the j pouch removal. ininderstand the financial situation. I would find a good colorectal surgeon in your network Or as allykat stated talk to your dr about billing issues. [ more ]
AllyKat Lori, I would talk to your old doctor especially since you have been with him so long. Maybe they can bill thru another doctor in the office or work out something else. My doctors have worked out things with me I don't know how I would feel about a pelvic Surgeon. I guess you could always head to NY or Cleaveland. Maybe John Hopkins would be closer? I know when you feel awful having to travel to interview a surgeon Is such a pain. [ more ]
LORI726 Starry-I need to change doctors b/c my old colon/rectal surgeon is not covered by my insurance so I have nothing scheduled yet. I was going to say screw it and go to him anyway but after 2 outpatient OR trips that only lasted 1 hour each, I owe at least $8000 with the bills I have so far. I am 41 years old and he has been my doctor since I got my colon out at 18 so I feel like I have just broken up with a long time friend. I tried to use the colon/rectal surgeons associated with my hospital... [ more ]
See all 28 replies...
J-Pouch ForumsOstomy & Skin
How did u all manage to recover!!?
AllyKatAllyKat
AllyKat Yes Starry same as you. PS I pm you [ more ]
Starry01 Hi Allykat. I just had a perm ileostomy and the j pouch is diverted I guess. Not sure if that's the same as you. But for a few weeks I felt the same as you. Then all of a sudden i am able to do almost anything and eat like crazy! However, I do still get tired easily and I am working On building myself up in case I have to get the jpouch removed soon. I'm walking and trying to get as much rest as my body needs. Give yourself some Time and I am sure you will be back normal - or even better!!!! [ more ]
PoucherInTO Ohhhhh AllyKat - I know I know, it was by far the HARDEST thing I've ever had to do! You are right, it feels like being run over by a truck, and then the truck backs over you again! I was so tired, I barely had enough energy to soap myself in the shower, and forget about raising my arms to wash my hair! Everything takes a ton of energy, and like you, I barely had an appetite. I ate enough to make my home care RN happy - as she would come every day and ask about food and rest, but I really... [ more ]
See all 3 replies...
J-Pouch ForumsOstomy & Skin
Appetite after surgery
AllyKatAllyKat
liz11 are you dehydrated? highly likely because you probably have a loop if your jpouch was left in place. get hydrated first and then start on tiny tiny very frequent "mini meals" on "mini plates" - say just a bite of banana and a half a cracker. or one spoon of peanut butter. it will get better ally. this loop ileo could really change things positively for you. Try to get your mind around it so your body can try and heal. Good luck [ more ]
See 1 reply...
J-Pouch ForumsOstomy & Skin
Pouch Removal Prep
F Fosty
PoucherInTO Heya Fosty, I'm not sure if you saw my reply to your PM - look up at the top of your screen to where it says "dialogs" and you should see my email in there [ more ]
Fosty Lambiepie thanks so much! I really needed to hear that. I've totally had enough of my pouch! [ more ]
Lambiepie Fosty, good luck with your pouch removal. I had mine removed in January. I can honestly say that my life has been better in the last six months than it was during the four years with my jpouch. Keep your eye on the long-term and best of luck! [ more ]
See all 11 replies...
J-Pouch ForumsOstomy & Skin
Going to a perm ileo
GinLynGinLyn
jonnakaye I've been suffering with an RV fistula for a few years now. I recently had a temp ileo to allow the area to heal before attempting to repair it and my jpouch. I hate the ileo and want to at least try and save my pouch for now. I'm just trying to decide who to let do it, Beck or Ashburn. The RV fistula is so painful I can barely function most days. I hope that you find relief from your long battle with an RV fistula. You deserve it! 😊 [ more ]
GinLyn Well, in my case, the pouch removal is because literally everything else has failed. The stupid fistulas keep recurring -- and I haven't been able to minimize symptoms and live with them, unfortunately. Repeated infections, pain, not to mention constantly pooing myself, one way or another (so to speak). At this point, having had a pouch advancement which has not healed completely well (I'm mostly continent as long as I only eat white bread, rice, and bananas) combined with the development of... [ more ]
jasmine2 ❤️
See all 12 replies...
J-Pouch ForumsOstomy & Skin
Ostomy Pouch Covers
P PoucherInTO
PoucherInTO Hi Lambiepie! I am so happy that you are getting a lot of use out of your covers I have a bunch of them too, and you are right, they are great at keeping sweat at bay - I hated the feeling of the bag getting warm against my body. I hope all is well [ more ]
Lambiepie I just ordered three more covers. I can't say enough about these, especially in the warm weather. They keep the sweat away from my bag, fit beautifully and don't create a lot of bulk as the material is thin cotton. Love them! Thanks, PoucherinTO, for the info. [ more ]
Lambiepie Clever1, anything that makes our ostomies cool is good! [ more ]
See all 14 replies...
J-Pouch ForumsOstomy & Skin
Does anyone here use ostomy wraps? need help
dgtracydgtracy
thumprhare My ostomy secret belt felt tight Initially then stretched just a smidge. And no issue with pancake-ing or preventing flow. [ more ]
Sean NY The rings flatten out as they are stretched into the shape to fit around the stoma. They are about half as thick compared to before flattening and do not really cause the wafer to stick out very much. I'm using them because my nurse feels they last longer than paste with an ileostomy, but dgtracy, your number of days before a change is really good. I change every 3 days. [ more ]
dgtracy Sean, i second hollister. it has been my setup from the start, i consider myself extremely lucky having found it earlier. on average im getting 6 days, if theres any issues then i change it day 5. my setup is: stoma powder if needed (i check for redness) barrier wipe Colopast or Adapt paste on flange dry for 1 minute push on hollister flange put on hollister bag and hold palm for 5 min its worked so awesome. i have looked at the rings but theyre so thick i think it would feel awkward if i... [ more ]
See all 20 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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