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J-Pouch ForumsOstomy & Skin
Brava Elastic Barrier Strips - FREE
B BLECCE
Holyfield47 Originally Posted by BLECCE: Hi Holyfield - I just got another free sample in the mail today from Coloplast...it's 2 SenSura Mio samples (2-piece Flex Drainable Ostomy Bag). Would you like it? If so, just message me your address. [ more ]
BLECCE Hi Holyfield - I just got another free sample in the mail today from Coloplast...it's 2 SenSura Mio samples (2-piece Flex Drainable Ostomy Bag). Would you like it? If so, just message me your address. [ more ]
Holyfield47 Thanks for the advice....I'll call them now. [ more ]
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J-Pouch ForumsOstomy & Skin
calcuim supplments that don't cause butt burn and diarhea
Libby1Libby1
Ljz I just had an infusion of Reclast. This is given once a year for osteoporosis and once every 2 years for osteopeni. It was recommended by my rheumatologist since I was already having major acid reflux, and the weekly dose of Fosamax I had used previously causes acid reflux and she didn't want to add to what I was having. Seemed like great option though they say you may feel bad for one day, though I did not have any issues. BTW, I needed the supplement due to being on 40 mg Prednisone for... [ more ]
DG78 You might try Osteo-K for a calcium supplement. Debbie [ more ]
liz11 are you under the care of an endocrinologist? There are lots of treatment options for osteoporsis: actonel and other biphosponates, also Forteo. Its a daily injection. Have you tried chewable calcium tabs? [ more ]
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J-Pouch ForumsOstomy & Skin
ostomy is almost all liquid, still absorbing nutrients?
dgtracydgtracy
Lambiepie No problem. I had been following your posts about your latest j-pouch adjustment. Hope it's smoother sailing for you by now. [ more ]
dgtracy Apologies Lambie i just saw this pop up again, i had my ostomy reversed again on January 26th. it took awhile but near the end it started to thicken again. [ more ]
Lambiepie Dg, how are you feeling? Has your ostomy output thickened up at all? [ more ]
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J-Pouch ForumsOstomy & Skin
My pouch is getting removed Feb. 27th
Ann M.Ann M.
Lambiepie Haha, I wish one of my side effects was wanting to clean! I know about trying to find control where you can, though. I found myself getting really negative and angry over stupid things before this surgery. I'm not waiting for the other shoe to drop anymore. It is a relief and a blessing. I had some issues with leaking as the swelling in my belly went down. I met with my ostomy nurse yesterday and she saw what was causing them. I will now use a convex appliance and I think that will do the... [ more ]
Ann M. Hi Lori, What a great quote! So true, I did feel ruled by the pouch. One theme for me about having Crohns/UC, is that feeling of having no control over the illness. That lack of 'control' truly showed up in different areas of my life, such has being a neat freak with my house, because cleaning was something I could control. It's very interesting, the psychological effects that this physical illness contributes to. Just during my recovery, I find myself stressing about the clothes piling up... [ more ]
Lambiepie Ann, glad you're on the healing side of this and you will continue to feel better and stronger. I was concerned about pain, too, mostly about the butt pain, and relieved that it wasn't as bad as I expected. I read as much as I could from people who had already gone through it. The thing that stood out for me was that even those who had pretty major complications from surgery were still glad they had it. I also remember the line posted awhile ago: "the j-pouch rules you; you rule your ileo."... [ more ]
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J-Pouch ForumsOstomy & Skin
pain and skin 6 days after surgery
K kariA
kariA Hi guys, Thank you for your replies. You are right, I need patience and have time pass. Fight like a girl, am able to drink oj. But had some Gummi es today and stomach ache... you never know. thumprhare, not having discharge just some pressure and discomfort, like having to go to the restroom. Was told it's normal. Hopefully. .. having new problem and will post it in a bit. [ more ]
thumprhare I had mine Feb 18th!! I have the same complaint of skin pain around the ostomy site. I feel like my skin is very clearly red and irritated although not bleeding yet. I have not ostomy nurse other than one 1 1/2 hours away. :-( You are lucky you have someone to come by. My ostomy nurse wanted me to use the powder and spray when it was irritated. I will follow because I need all the help I can get. Oh, are you having discharge from the bum? I was told expect some mucous but what I am getting... [ more ]
Fight like a girl Hello...it's been 25 years since my surgery but I do remember what you are talking about. I noticed you said you are drinking O.J. with water, everyone is different, but I could not drink O.J. at all even know I can't. Take care. But definetly keep hydrated. Patti [ more ]
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J-Pouch ForumsOstomy & Skin
Did I just have a blockage??
LambiepieLambiepie
chiromancer The barrier strips by Coloplast are two half circles maybe one inch wide and you place them over the edge of the pouch that is on the skin so that they are attached to the pouch flange and also onto the skin. They over lap each other. They both hold the pouch on securely (no need for belts) and can help keep any leaks from getting out. Nothing is perfect but since using them I really dont think about leaks or always having a "change" with me. Its been several years since I began using them... [ more ]
Lambiepie Chiromancer, can u tell me how you use barrier strips? [ more ]
chiromancer Sorry for your experience. Hard to say if it was a blockage. If the out put after the initial eruption was mostly liquid I would say yes. There seems to be flushing after a blockage and it can last from a few hours to a few days. With me it also tends to have a particular smell. If your not using them I would really recommend you add barrier strips to your pouch set up. I use Coloplast Brava barrier strips and they both help in securing the pouch and in retaining any leakage. [ more ]
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J-Pouch ForumsOstomy & Skin
11 days post Stage 1 w/ lots of pouch emptying
thumprharethumprhare
thumprhare I may go ahead and call Hollister as you suggest. The first time they called they recommended the diamond which worked some better. Tonight it leaked in that same belly button area. I don't know what I am going to do. If I change the flange every day or so (when the skin hurts) to get the skin healed then have a belly button leak I am going to burn through my supplies. The ostomy secrets belt is good, my only experience. The "intimate moments' (giggle/snort) is actually the most comfortable... [ more ]
Lambiepie Haha, I just called it a ring of fire because that's what it feels like! I use Hollister products, too. Maybe you can speak to them and see if they have any suggestions. I have sensitive skin, too, and have the red square, but I think it's just from removing the flange. It feels ok once the appliance is on. I'm looking for some kind of belt. Do you like the one from Ostomy Secrets? [ more ]
thumprhare Thanks for the reply. I do use a two piece system, and I am turning to a diamond shape. Sorry, I guess I should have put that in there. At this point, I have to make it a diamond shape then make a little snip of the tape, squash the ring at the place my belly button start and lay the tape in my belly button. This morning, my husband and I remeasured, got 1 1/8" so cut to fit. We put the Eakin in, after the crusting and all that jazz. I noticed that I think I may be having a reaction to the... [ more ]
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J-Pouch ForumsOstomy & Skin
rectum removal stitches
LambiepieLambiepie
LHetti I think they just dissolve, not really fall out. I had a knot that was very uncomfortable that took the longest to dissolve (the nurse could see it and I could feel it) and once that was gone, I was so much better. Again, the 4 week mark was when I really felt better. My bottom probably hurt until about week 5 and my incision still had to have a dressing until week 6. Hang in there! Laura [ more ]
Lambiepie Thanks for the response, Doug. I'm almost done with the first month, so I'm halfway there! [ more ]
Domino300 I don't remember about the stitches, but the butt pain is the worst part of the surgery. The worst part is sitting on a toilet seat which stretches the wound out. It's been 6 years and I still won't sit on one, so I can't imagine how it is for a woman. It took 1-2 months to be comfortable with it in daily life. Doug [ more ]
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J-Pouch ForumsOstomy & Skin
how long does pain last after jpouch removal surgery?
B BeenieBaby
badguts Ai pain.....it goes on for a very long time.if people tell you you'll feel fine int,he morning ,maybe mybryou should stick them until morning????? This **** HURTS we have tobe ready to suck up what happens , it wo t be what. They tell you!!!!!?!! Had a bunch of surgery and they all lie.remember the doc don't feel a thing. Be very,very,very ,wary,of whatthey offer .maybe good .....but just what out too.Badguts talking ,,11 years odd surgerys,try this try that,what about this!!! Watch watch... [ more ]
LHetti I agree- the pain for me lasted about 4 weeks (on the pain killers that whole time), but then significantly better! Best wishes for your recovery! Laura [ more ]
Holly HM I need to lose at least 30 pounds, but I know it will take some effort after I recover. Looking forward to feeling well enough to exercise. My surgery will be six weeks from tomorrow. I try not to think about it too much but subconsciously I must be. I wake up every morning thinking Oh, no surgery. But this is something I have to do for me and my quality of life. I hope you continue to do well. Keep in touch. Homie [ more ]
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J-Pouch ForumsOstomy & Skin
sick with sore throat and cough, ostomy is straight liquid
dgtracydgtracy
Lambiepie dgtracy, I certainly hope you're better by now! Mysticobra, all I can say is not having diarrhea is the silver lining for you, although getting up all night to go is not fun. I always joke that I get diseases but I don't get sick . However, I've had two upper respiratory infections in the last six months. Each time, I had constant migraine and cough but my pouch was on its best behavior. I seem to recall the same experience when I had my stoma. Our colons play so many roles I never knew... [ more ]
Mysticobra I am just getting over a double whammy. Flu and strep. I felt terrible. But... I thought taking antibiotics would give me diarrhea but just the opposite. I have a j pouch and would not go to the bathroom the whole 8 hrs at work. Just before I would leave I would force some out... Easily I might add but then I would be up and down all night and still am.... going bm. Weird. I have had it for two weeks now and it is finally subsiding. Now I don't know how it would affect me with a bag. But... [ more ]
dgtracy Well i must say its a relief knowing its normal but also sucks its like this. crossing my fingers that this goes away soon. thanks you two. [ more ]
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J-Pouch ForumsOstomy & Skin
VERY RED AND SORE UNDER MY ILEOSTOMY, SUGGESTIONS?
PouchomarxPouchomarx
Ljz Hope things are better for you now, but just wanted to say that Ilex is indicated for ileostomies. You put it on as thin layer- more like wax than cream. It sticks pretty well even on damp skin. Good luck. I did just order from Ilex US. From ilexhealthproducts.com. There is more info on website. Laurie [ more ]
Pouchomarx doubt its an allergy, otherwise i would think it would be sore and red all arounfd the stoma, its just underneath the stoma. [ more ]
liz11 you might be allergic to the tape on the hollister wafer. Change more frequently for now. Also get some other wafers too try. Tape free. Even other manufacturers wafers. My skin couldn't tolerate any of the stuff with tape already on it. another thing would be to try and figure out if you are getting a leak somewhere. So when you take the wafer off look at the underside of it and see if there is a particular zone that leaked. also could be that brava ring bothering you. Thats pretty tough... [ more ]
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J-Pouch ForumsOstomy & Skin
Lomotil
dgtracydgtracy
Mysticobra Hi. I can take one lomotal and it plugs me up. I don't use anything to thicken and I feel as though I get plugged up. I eat a banana and Apple everyday and it works to thicken but seems like when I bm only some comes out and it just stops when I know more is there. Weird. Just have to experiment with it all to see what is best for you. I still am experimenting with things at close to a year after. Takes time. [ more ]
dgtracy I dont believe it has reoccurred. i have even gone up on the dose and have not experienced the same thing as before. i was taking the lowest dose which was 1 pill every 6 hours..now with this cold i have im doing 2 every 6. Thanks Jan : ) [ more ]
Jan Dollar The main reason not to take both is that it is like doubling up on the same medication. But if you are alternating small doses, it should not be a big deal. You might have felt dry and blah due to a sensitivity to the atropine in Lomotil. Imodium does not contain it. It is a very small dose in the lomotil, but some people are very sensitive to it. Could just be coincidence too. If it recurred with further lomotil dosing, you could be more sure. Jan [ more ]
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J-Pouch ForumsOstomy & Skin
How many people wear one?
MysticobraMysticobra
Mysticobra Jan. I will definitely bring g it up. I have been keeping a diary of what I eat for a week. Pretty well the same thing with different meat involved each week. I will ask. I will most likely have to see a dietian to get myself straightened out on that subject. Thank you. Seeing how I can tell pretty well in a day how things affect me it should not be difficult to figure out. I had some grape juice this morning. Like you suggested. Around 11 and at 8 30pm I had formed really dark stool. Have... [ more ]
Jan Dollar Variety is the spice of life...and health! Yes, something to look into. After a year or more of a limited diet, your reserves can definitely become depleted. I am not saying that a nutritional deficiency would likely be a primary cause of your symptoms, but it could make them worse. Many nutrients are necessary for normal nerve function. Physiology is very complex. Jan [ more ]
Mysticobra I definitely will have all that checked. I am taking notes for my next appointment. I never thought as my diet that limited but I guess it is. [ more ]
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J-Pouch ForumsOstomy & Skin
Getting ahead of skin excoriation
Krys777Krys777
Krys777 Thank you for the reply and kind words! How do you mean it "will be much much easier to take care of"? [ more ]
liz11 good and experienced surgeon who will create a great stoma for you, good ostomy nurse(s) to locate that stoma and also to help post surgery, patience with yourself at figuring out the right gear for the first few months after surgery, and quick action should any skin issues begin to develop. All of the above can result in good skin. 2.5 years with a perm. ileo now.. and honestly have only have about 6 weeks of a skin problem.. but that was due to some other freaky things going on in my body. [ more ]
Krys777 Thanks mark! Very helpful, when I did have my loop I was able to have it on a few days before I would feel the burning sensation on the skin. When changed occasionally there was some irritation,but my stoma nurse was AMAZING. I am going to get her back when I go back to the bag in January. I will talk to her about your suggestion! [ more ]
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J-Pouch ForumsOstomy & Skin
Jeans
LHettiLHetti
skn69 I'm wearing a fitted, 3/4 sleeve, scoopneck black t-shirt today from the maternity colection. It looks fitted but does not cling, has some sheering/pleating on the front sides to created a loose effect over the tummy and the front is longer than the back. Kind of almost to the top of the tights...wore it with flat black sneakers (Sexy Guess ones), Black jeggings and a little trimmed cardigan over it...my perfect work uniform. Nobody knows that I have a kpouch even when it is uncooperative,... [ more ]
Lambiepie Ohhh, early pregnancy bathing suit. Brilliant. I'll bet that look you described yourself wearing looked fabulous! I tend to wear looser, bohemian tops anyway, so it works perfectly for the "ileo" look. I also bought a couple of Bebands from Target in preparation. I'm planning ahead more this time as this time is permanent. No muu muus for us! [ more ]
skn69 Lori, I love my flea/farmer's market...(no, there are no real fleas...I hope)...I get all sorts of end of season stuff for peanuts... The maternity unddies and bathing suits were wonderful...they were sort of like for a 4 -6 month pregnancy and not 9 months with triplets so they worked great...I still use them when I am very bloated or swollen. Vanity fair and Olga also make tons of spanx type undergarments that I find fabulous...I use 'slimming' leggings that massage my legs/hips with... [ more ]
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J-Pouch ForumsOstomy & Skin
One week out - Jpouch removal - advice on bum pain...
ClickyClicky
LHetti Welcome home! Keep us posted on your recovery! [ more ]
Clicky Thank you so much for your replies - it really helps to hear from people who know! I'm home now! My bladder finally woke up after 10 days and the pain is more bearable but it still hurts. It's good to hear that it stops eventually. It sure is nice to be hone - that was brutal - but completely worth it. . [ more ]
LHetti Clicky, I hope you're glad to be on this side of the surgery. Yes, the recovery is rough, but by week 4 I was feeling so much better. I was on 4 oral pain medications and that seemed to handle the pain for those first four weeks. Are you taking a lot for the pain? I even had a lidocaine patch to stick to my bottom to even take the edge off the pain that way. My stitches just dissolved, but there was a knot or something that really bothered me in the process. It too dissolved as the weeks... [ more ]
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J-Pouch ForumsOstomy & Skin
Newbie
DH Donna H
Holly HM Y'all have been such a help. I am going to have my pouch removed October 3rd and I am seeking all the information I can get. thanks [ more ]
mrskpollard I was pregnant when I got my ilestomy so I completely understand how you feel about the bags leaking. We had a lit of trial and error. Its almost impossible to get the bag to stick with ut being ao cloae to the incision. We would off set the hole you cut for the stoma and angle the bag. As far as emptying the bag, I did it every time I went to the bathroom because I was self conscious about it. They have a lot of different pouches out there and ince you find one that works for you it goes so... [ more ]
PoucherInTO Hi Hi! No, there weren't any problems in removing my jpouch. My surgeon expected there would be way more scar tissue and adhesions (after 18 years with the pouch) but she said it really wasn't bad at all. One of my fallopian tubes had completely adhered itself to my pouch, but they were able to release it and didn't remove the tube. I have a very low (almost zero!) ovarian reserve anyway, so bio children are not in my future, and I'm only 33. I did feel a bit of mourning over the loss of my... [ more ]
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J-Pouch ForumsOstomy & Skin
Getting jpouch removed
ClickyClicky
Lambiepie Best of luck, Clicky! [ more ]
Holly HM I have given myself an enema every morning and every night for 20 years, but that is not working for me anymore. But if you have not tried it, you might want to give it a shot. [ more ]
BobS Clicky - I hope you read this before going to Canada. Not saying this will solve all problems, but have you considered just giving yourself an enema when you get up in the morning. I didn't have a leakage problem, mine was nothing would come out. Finely gave up one morning and tried an enema. Total success. Giving yourself a daily enema is not a medical issue. My routine, an enema of warm water in the morning when I get up assures me a carefree day and a good nights sleep. As for sore butt... [ more ]
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J-Pouch ForumsOstomy & Skin
stoma swollen
U UjohnjC
Lambiepie Hi UjohnjC, you may want to post your question under "Help Need Advice Now." Although most people are j-pouchers, many are former ostomates and may have an answer for you. I had a stoma, just didn't experience what you did. Sorry! [ more ]
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J-Pouch ForumsOstomy & Skin
Surgery on Monday
K kennyboy
Holly HM Heading for surgery October 3rd. So very glad to hear you did well. Thanks for the encouraging words. [ more ]
Clicky Kenny, thank you for writing your story - I'm so pleased you are home now. I hope everything continues to heal well. [ more ]
Lambiepie Kenny, great to hear that all went well. I'm in the "anticipation of surgery" stage and getting nervous, so to hear from you is reassuring. Continue to heal well. [ more ]
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J-Pouch ForumsOstomy & Skin
Jpouch removal after 22 years
G goldie
goldie Thank you all for the feedback...I have an appointment next Friday with my surgeon to ask more questions...I was hoping to put off surgery until December but I don't think it's realistic anymore...again, thanks for the support as it's greatly needed...debbie [ more ]
Lambiepie Clicky, how was your year with the ostomy but still having the jpouch and why did you do it in two parts? I'm scheduled to do the whole thing at once and am a little nervous as, according to posts here, this is a major procedure. [ more ]
Clicky I'm having my jpouch removed too in three weeks! I have had the ostomy back for a year now but will be getting the jpouch removed and a Barbie bum... The ostomy is no big deal now, but I am worried about the surgery. When is yours? [ more ]
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J-Pouch ForumsOstomy & Skin
Excision of jpouch
K kennyboy
kennyboy Thanks Eric I have had it done now it's all gone and I'm at home recovering I was in hospital 8 days and like you say it was pretty tough surgery but it was soon over and I don't regret it at all my bum does feel strange but it's only day 10 and time is a great healer ,thanks everyone for advise I'm so looking forward to getting back to normal health .. [ more ]
Eric I had it done June 2012. I can't lie, it was a pretty rough surgery, BUT, so worth it! My J pouch was falling apart and I was in agony 24/7. After the surgery, I'm pain free! Not much I can offer in the way of advice as everyone reacts differently, but I will say, within a few days, I started to feel so wonderful, and the pain was gone! It took me about two weeks to recover enough to go home, and about six months to feel completely recovered. Just don't rush it, take all the time he needs to... [ more ]
aka KNKLHEAD I wanted to bump your post. I think you might be better off posting this in the "general" forum. I might be having an excision in the future, but sorry that I don't have info for you. Best wishes for him! [ more ]
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J-Pouch ForumsOstomy & Skin
3 Weeks Out From J Pouch Removed, Now Perm Ileo
P PoucherInTO
Holly HM So very glad to hear that you are doing well and the surgery was better this time. I got an abscess after my first surgery with temp over 104. I almost died from the infection, so that pushed my recovery time to about 9 weeks. Praying and hoping this one goes better. Please keep us posted about your continuing recovery. Homie [ more ]
LHetti I had my 15 year old jpouch removed this April. It's a big surgery and my barbie butt had to heal as well as that big midline incision. But it was ONE big surgery. For me, it was at least a 6 week recovery, but went much smoother than all the complications of my colectomy/jpouch surgery. I know there are hurdles anytime we face surgery, but my experience was better this time. Laura [ more ]
goldie I'm going to have my jpouch removed after 22 years due to Crohns...was the removal surgery more difficult then the creation of the jpouch? [ more ]
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J-Pouch ForumsOstomy & Skin
pouch removal
K kmj
Holly HM Amen to that. Just trying to keep my mind off of the surgery. I really do dread a 6 hour surgery. That is how long my original surgery took. They took out my uterus and ovaries with the first surgery. My surgeon said it would be better not to have to go back in there for anything, so they basically cleaned out anything I didn't need. The surgeon that will be doing this surgery says it may take that long because chances are the pouch has attached itself to my bladder and will need delicate... [ more ]
Lambiepie Holly, I am feeling somewhat anxious over this major operation. Like you, I find myself saying, "next summer, I can have a bonfire on the beach and eat a sandwich!" I did very well with my ileostomy. I felt strong and like I had conquered something. The only leaks I had were 2 near the wafer early on because I had neglected to remeasure my stoma and a handful later from my watery loop output that I didnt empty enough and would break my clip open. Oh, and one from a large salad I ate late at... [ more ]
Holly HM Karen, thanks for asking. Are you having any leakage from your anal area? The nurse told me that I would have some, but the body will start to absorb it and it will quit after a while. I have been looking through ostomy supplies. When I had my temp ileo, the area under the wafer would break out and I would be miserable. That was 20 years ago and hopefully the products have changed and gotten better. I was reading about an appliance that has a filter on it for gas. Do you use that or... [ more ]
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J-Pouch ForumsOstomy & Skin
For those who got rid of your J pouch
dgtracydgtracy
aka KNKLHEAD Thanks, Donna. So thankful for the forum and nice to know others with similar issues! I guess one question I might have now that I read so much here: Is it less of a surgery to revise a pouch OR remove it? I've read that removing is such a major surgery ... maybe easier to give the JP another shot, anyway? [ more ]
Donna H KNKL, I agree with you that the quality of life with an ileo is underrated. I suffered with a j-pouch for 18 years. I was on the toilet way too many times and the BB was just terrible along with incontinence. My sphincter muscles were badly injured at the time of the colectomy so there was no way I was going to get any improvement of my situation. I hung on way too long. I went in for a Kock Pouch last Oct and woke up with an ileostomy. I was shocked and depressed and angry since there was... [ more ]
Alli Anderson Oops, I mean Dr. Remzi! [ more ]
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J-Pouch ForumsOstomy & Skin
j-pouch removal decision : devil’s advocate questions !
A Arnaud
Arnaud Thanks very much for your messages, Liz and Lynne, they're quite encouraging ! The part that scares me though is about having a surgeon who's done it many times ... I just had this afternoon an appointment with one of the top surgeons for this in France and it seems he does only a few pouch excisions per year (he didn't even know the exact number in fact), just because there's a very small number of patients with failing pouches (and that's a quite large hospital in Paris, specialized in... [ more ]
Lynne2 I, too, have not one regret about my surgery and only wish i had done it years sooner. As Liz said, it is very important to find an expert surgeon. Other than a few obstructions as I was learning how to manage my individual diet, i did not have complications. Liz had a very challenging recovery and even she has no regrets, so that says a lot. I hope you feel better soon! [ more ]
liz11 best decision I have ever made in my entire life... was to get rid of that jpouch. YES its a very massive complicated surgery. And don't even think of having it done unless your surgeon has done it many times before. I was one who suffered with multiple and massive complications from the jpouch removal surgery. But regardless.... I would do it again.. any day. My life is dramatically improved with that mutant jpouch beast gone. And as another person mentioned in another post... life with an... [ more ]
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J-Pouch ForumsOstomy & Skin
how many times do you empty your bag in a day?
dgtracydgtracy
dgtracy Based on the responses so far I wonder what my surgeon would thing about giving me the end over the loop...whether this is temporary depends in me and how I feel once I have it. [ more ]
Lynne2 I had entire j-pouch removed and have a perm ileo. My output varies significantly based on what I eat. You will figure out over time what thickens your output and what doesn't and then you will able to plan accordingly. I'm probably about 6-8 per 24 hrs. My output is often very liquidy (I love fruit & veggies) so I use absorbent packets in my bag (I think they are called Ile-sorbs?). Imodium can also help if you can tolerate. I recommend emptying before bag fills to point where your... [ more ]
liz11 about 6-8. with perm. end ileo now and jpouch totally gone, And always one of those empties is in the night. but with jpouch disconnected ( and still in situ) and loop ileo it was 20+ with all sorts of medical intervention also. [ more ]
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J-Pouch ForumsOstomy & Skin
Ostomy or a difficult pouch? Hmmm decisions decisions
Alli AndersonAlli Anderson
Alli Anderson WOW! Thank you for your support, it means a lot to me. I'm sorry I've been so late in my reply! Today I feel well but as you all know, that changes really quickly and most of the time without warning. I've recently been trying imuran and messing with my meds really sets my pouch (and butt) on fire. I've gone back to my regular regimen of 500mg cipro and 6-8mg immodium, 2 tabs in the am and 2 tabs before bed. I can only tolerate 50mg if imuran, too nauseating. I've been on cipro for 10yrs but... [ more ]
PoucherInTO Hi Alli Boy, I can empathize with you! I'm so sorry to hear of what you are going through. Sounds very similar to what I was experiencing. I had my j for 18 years, I'm now 34 and got rid of it Oct 2013. I have never been happier or healthier, all thanks to making the big decision to go perm ileo. My surgeon said "when the jpouch works it works well. But, if you're even thinking of going back to the ostomy that should tell you something". Quality of life and long term health and happiness... [ more ]
Lynne2 I'm sorry to hear about your situation. I suffered with pouchitis for more than 15 years before finally having surgery. I recently celebrated my one-year anniversary of having my j-pouch removed and a perm ileo constructed. Couldn't be happier with my decision! Wish I had done it years earlier. Still don't have a firm diagnosis of UC vs CD, but it got to the point when the diagnosis didn't matter. The darn pouch needed to get out -- even Remicade wasn't helping. I am med free and loving the... [ more ]
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J-Pouch ForumsOstomy & Skin
permanent ileo advice
LambiepieLambiepie
Lambiepie This is all very comforting to hear. Liz, thank you for saying that this should be presented as a viable option, not a last resort. I've always gotten that impression from my surgeon. I also wish he had finished our initial conversation four years ago with, "BTW, think hard after surgery number one. If you're satisfied, it's a whole lot easier to maintain that end ileo than to remove a j-pouch once it's created." No, he waited until I came back to discuss removing my difficult pouch to tell... [ more ]
Lynne2 I totally agree with Liz. She was one of my inspirations for doing the surgery! [ more ]
liz11 feel free to pm me too. i did it 27months ago. And despite complications out the whazoo for over a year afterward... it was by far the best decision I have ever made regarding my medical care. It is sad that this is presented as a last ditch effort to patients when it really should be presented as a way to have a great quality of life.. and not waste your life away.. trying to play the jpouch game. really.. pm me if you would like. [ more ]
See all 18 replies...
J-Pouch ForumsOstomy & Skin
A mobile app from a fellow Ostomate!
U ucfree
oonja ❤️
Lynne2 Wishing you all the best! Keep us posted! [ more ]
Holly HM Glad to hear you are doing well. I hope that in a year's time I can be saying the same thing. I know the surgery is difficult and long, but I am in much better shape for a long surgery than I was with the original j-pouch. I was at death's door and on high doses of cortisone. The cortisone kept me from healing properly and I ended up with a severe infection. Hopefully this recovery time will be better. thanks [ more ]
See all 14 replies...
J-Pouch ForumsOstomy & Skin
Bag question
PouchomarxPouchomarx
aka KNKLHEAD I give Coloplast a lot of credit for engineering the Mio. It certainly is a very valiant shot and they obviously worked hard on the new design! I was very optimistic and gave them a very good test for several weeks. The filter worked great for one night .. but not for two. I also had premature leaking on the two piece and the one piece leaked underneath prematurely, as well. I am really running through the products and paces -- Hollister, Convatec and Coloplast. So far, the Convatec has the... [ more ]
chiromancer Regarding the new Mio system there have been a number of reports on the HealingWell ostomy site of failures. It was originally released for people with colostomy and may not work well for a ileo. They have sent me a card to request samples but seems like they need to work on the design. I use a Coloplast slightly convex Sensura one piece with Eakins seal and Brava strips and it works quite well. 1" was too small and 1 1/8" which I use is too big but the Eakins seal fills the gap. [ more ]
Pouchomarx well i tried the new Coloplast Mio bag, i cut to 1 inch and also used a seal. less than 8 hours go by and stoma starts hurting and burning. I take the bag off and sprung a leak. I will stick with my 7/8 Hollisters i guess [ more ]
See all 5 replies...
J-Pouch ForumsOstomy & Skin
stoma names
GinLynGinLyn
Halo52208 I named mine Izzy after the one on greys anatomy. Because she was stubborn and wouldn't stop talking. Mine never stops making noises and flowing. So she and I talk a lot. She gets scolded in the shower if she starts spitting. [ more ]
aka KNKLHEAD While I'm not sure I want a body part with this name, I think calling mine "Rush" fits pretty nicely for obvious reasons. [ more ]
skn69 Not only do I talk about him but I also talk to him!!!! We have conversations about fiber, thickness, gas...passionate conversations! But it is habit and makes me seem like I have a split personality (which I must)...no, he does not answer me but he does burp! Sharon [ more ]
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J-Pouch ForumsOstomy & Skin
More discreet bags??
PouchomarxPouchomarx
ISeeUC I wear a Comfizz wrap to flatten the bag. The wraps are snug, so I ordered one size up to get the right fit. [ more ]
Lambiepie Poucho, I've been scouring youtube and found a video by someone who swears by Spanx, or something similar to Spanx. It covers from above the belly button to the groin or hip flexor area which, pretty much, covers the bag. She showed the Spanx and then covered it with her quite form-fitting top and you couldn't see the outline of the bag at all. She said she got them at Target and they were about $25 each. She has about four and rotates them as they others are being washed. If you get them in... [ more ]
See all 2 replies...
J-Pouch ForumsOstomy & Skin
irritation from adhesive remover wipes
GinLynGinLyn
Pluot I can't speak to the Marlen brand but with Hollister and Coloplast (sorry, the only ones I've used), there's no need to remove all the adhesive -- as long as there's no output on what's left behind, it's fine to pile new adhesive on top of old. Provided it's clean (wipe with damp rag) and dry (air dry or use a hair dryer on 'cool'), the adhesive should stick to itself. [ more ]
GinLyn Sharon, which disolvant do you recommend? The one I tried STUNG like no one's business! (The oil worked great to remove the adhesive, though!) Gin [ more ]
skn69 oil. Any body or baby oil....apply gently with a cotton ball or piece of gauze and rub using tiny circles...then you need to remove the oil with a very mild disolvant or everything will slip right off of you...Not a good idea! Baby lotion can work too.. Sharon [ more ]
See all 9 replies...
J-Pouch ForumsOstomy & Skin
hot tub
DH Donna H
oonja ❤️
Donna H It's an interesting thing that I can go a few days afterwards!! I do not, however, go with a new pouch. Maybe I will test the waters - :-) [ more ]
Cataja I have been in a hot tub with no problems...I do usually end up changing my wafer shortly after. I probably wouldn't go in if I was wearing my last wafer and waiting on a shipment...lol. [ more ]
See all 8 replies...
J-Pouch ForumsOstomy & Skin
skin breakdown
GinLynGinLyn
GinLyn Thanks, all. It is slowly getting better; yesterday was the first day I changed the appliance without actual pain, so that's great! Spoke with the surgeon yesterday as well and I've been bumped up on the priority list for the op; will find out date this coming week. So that's good news. Gin [ more ]
PoucherInTO I also agree with the other posters, don't worry about getting all of your Eakin residue off. I get most of it off but there is always some there when I go to apply my new wafer. Those barrier rings are designed to be very soothing and healing for the skin, so it's better to leave bits of it on rather than rub your skin to get it off. I would NOT use any oils or dissolvants, other than wipes made for the peristomal area, as they can further irritate the area and/or make it very difficult to... [ more ]
chiromancer I agree with Jill. I have found it not really required to remove all the residue which for me is primarily from a Eakins seal. I get some off during a shower and most of the rest off using a dry wash cloth after I shower. There is certainly some residue left and it doesnt seem to make much if any difference. [ more ]
See all 4 replies...
J-Pouch ForumsOstomy & Skin
J Pouch VS Living with Ileostomy
I izzie29
n/a I'm apparently one of the few who, if I could do it over again, I think I'd stay with an ostomy. My j-pouch was made somewhat incorrectly (small pouch, long ATZ) and has caused quite a few problems for me over the last 21 years. I was doing fine with the ostomy while I had it. However, if you have a surgeon who has LOTS of experience building j-pouches, and have someone who will provide you with excellent care afterwards (by that I mean years, not just months), you have very good odds of... [ more ]
Cataja Unless there is a reason not to first try the J-Pouch, I feel you have to give it a shot. If it doesnt work, you can live a pretty normal life with a permanent ostomy. [ more ]
GinLyn It's really a very personal question and decision. What have you heard about pouches? Are there any specific concerns you have, either way? There are many, many people with great pouch experiences and many, many with great ostomy experiences! Gin [ more ]
See all 3 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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