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J-Pouch ForumsGeneral Discussion
Mini stools?
CeeeeCeeee It seems so strange to experience constipation after years of the opposite! I believe it is all part of our new parts learning to adapt. There is so much trial and error in learning to work with our new plumbing. For me, eating an apple takes care of the "constipation" issue. Simple fix, for me anyway! Hang in there. It does get better. If not, don't give up. There are answers out there but they are not always obvious. [ more ]
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J-Pouch ForumsGeneral Discussion
timing of problem foods/drinks
Ro thanks for the response. im not sure if it was the alcohol, because i tried again and didnt have the same problems... crazy stuff here, this j pouch is!!!! [ more ]
Aria I was stubborn from the start and decided I wasn't going to cut anything form my diet, and so suffered through sometimes weeks of gas or pain from lettuce of broccoli or something, and now, 17 years later, I can have anything I want. It wasn't always easy, but it's been fine. Some people find they can't tolerate things they once could, and trying to work through it is harder than giving it up, and some aren't going to be able to. If this is your first time trying alcohol, try a smaller... [ more ]
samantha1803 Kathy I need to thank you for the beet post. I get fooled every time! I don't eat them too often but I swear I start crying every time i see the toilet that color. I sure this is the big one! Thanks for the laugh, I really needed that. [ more ]
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J-Pouch ForumsGeneral Discussion
Advice for a New Start?
Subsky That`s why I became active on this site again, to help out others and let them know it gets better. I remember when I was in the hospital years ago a guy who had a j-pouch came in the visit me, and tell me about the surgery. He was very helpful, down to earth, and most importantly let me know what I could realistically expect from j-pouch life. He also told me about j-pouch.org, which I became a member of my first week out of the hospital after my one stage j-pouch. For years I haven`t taken... [ more ]
TE Marie Subsky, I hope some of your great attitude rubs off on me! We have not gone through all we have to give up now. I'm too stubborn to stay down but it sure is hell some days! [ more ]
Subsky Thanks I'll look that up about the VSL#3DS. I also hope it's not Crohn's. Last scope a received a couple months ago my GI took biopsies and they came back negative for Crohn's, but he said the biopsies can be tricky. Also the physical thickening of section of small intestine, not just interior inflammation as UC is, made them think maybe Crohn's. My plan right now is to use this hitting bottom as my chance to climb back up. I've been feeling so ****ty from the pouch pain and frequency for so... [ more ]
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J-Pouch ForumsGeneral Discussion
New jpouch. Need help
tammykathleen Hi Minnie, Many of us have been where you are now, and we are proof that it WILL get better. I am so glad that you went to the ER and you are in the hospital. I despise being there myself when I have to go in, but it is really the best place for us to get all our issues resolved. I pray this nasty obstruction passes. How you have been feeling since you have been obstructed is NOT an indication of how you will feel when it has passed. I promise you. It takes patience, courage and faith. I... [ more ]
minnie I went to the ER last night and they are keeping me for testing/observation. they think it's a partial bowel obstruction since I threw up bile 5 times yesterday. I was very careful about eating soft bland foods, but I guess you could still get an obstruction? My stools are green diarrhea too so they are checking for infection. I hope the day will come soon that I will say I am glad I had this surgery. Thanks for the kind words. [ more ]
mgmt10 How are you today? If you are still vomiting, please go to the ER. [ more ]
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J-Pouch ForumsGeneral Discussion
hard area around ileostomy closure
Aria Seconding Jan. It could be an infection, like an abscess, that needs care ASAP before it gets worse (a week's wait should never happen), or it could be scar tissue forming. If you're not sure, then go in. Especially when you're still healing, it's much better to be safer than sorry. [ more ]
Jan Dollar Not an emergency, but you need to call your surgeon. Sounds like it is an infection or possibly just a seroma. Either way, probably needs to be drained. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
itching
CTBarrister Where is the itching occurring? If it is on his skin a dermatologist can scrape the skin, look at the scrape samples under a microscope, and tell you in less than 30 seconds whether it is yeast. Yeast infections can be defeated through antifungal creams, powders and pills. [ more ]
Colleen2001 Another good one for the itch is Calmoseptine. It's generally a moisture barrier, but the menthol relieves the itch. Just don't use too much, especially with children. It can almost burn if applied in too thick of a layer. Good luck! [ more ]
kathy smith Did they also test for yeast? Yeah, that itch is maddening. There are two products that help me. One is OTC Nupercainal - it's located in the same vicinity as Preparation H. The other product that really helps is Ilex. Drugstores can order for you or you can order it directly from the company . It's the king of butt creams. You need to put a thin layer of vaseline over the top so the gluteal cheeks don't stick together. But I usually don't bother with the lube layer. kathy [ more ]
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J-Pouch ForumsGeneral Discussion
surgery- part 2
Subsky Do you currently have a loop or end ileostomy right now? Have you discussed how many parts your surgery is going to be? If they go non invasive, then time in the hospital won't be more than a week or so. Depends on how healthy you are and how your surgeon wants to go about hooking you up. My j-pouch was supposed to be a two part with a temp ileo but he liked how the pouch looked and hooked it up right then. I love it, you need time for your body to adjust, but with a healthy lifestyle and... [ more ]
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J-Pouch ForumsGeneral Discussion
Post takedown Question
Jan Dollar Could just be a pulled muscle, a torn adhesion (not a bad thing, just a thing), or a kink in your intestine. The fact that it is better probably means it will resolve on its own. As long as the sharp pain is not there and it is improving, you can just wait and see. But, if it persists more than a few days without gradual improvement, call your doctor. Obviously, if it gets worse, particularly if the pain is sever, you need to call sooner. Some of the complications at the stoma site can be... [ more ]
Peachy I had my takedown on May 21st and I have a spot like that on top. So, I'm very interested to hear some responses to this. Sorry I'm no help [ more ]
Holly M Wow you are doing good walking 3 miles a day so soon after takedown. I had takedown March 18th and that same area you are describing is still a little sore. Maybe you are overdoing it a little and just need to take it a little easy and see if that helps. Good luck to you! You are doing much better than I was after takedown that is for sure! [ more ]
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J-Pouch ForumsGeneral Discussion
Unsettling Tobacco/Cigar Experience
Subsky Looks like your health is dependent on whether or not the yankees win husky, hopefully they have a good season :P I used to be a light smoker, a few smokes a day. I quit a few weeks ago, I don't have the lungs/body for it. And cigar smoke would make anyone light headed if you inhale it, even if you're a regular smoker. Picked up some cuban cohibas to smoke last time I was out of the country, still have one left to light up for a special occasion [ more ]
Jan Dollar OK guys, let's stay on topic. We are not a sports forum. Jan [ more ]
CTBarrister rusty, Yankees play the Nats this weekend, I too am looking forward to seeing Bryce Harper and the surprising Nats. [ more ]
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J-Pouch ForumsGeneral Discussion
Electrolytes, anemia-help
grandmaof1 Thanks skn69. I have not only tried one veggie so far and it is squash. I don't think I can try and others yet. I had my take down March 16th, 2012. I am finally feeling better this week. The doctor doubled my medicine and I think it is working. I do eat blueberries but just a few at a time. We do grow our own garden so I will have cucumbers soon!!! I am just excited I have slowed my diarrhea down. I take 2 lomotil and 2 loperamide four times a day now. I hope this works. I am also on Cipro... [ more ]
skn69 Granmaof1, Bananas are not the only fruit that contains potassium...you can try tomatoes if you like or potatoes (not fried but steamed or boiled) and cucumber have tons of trace minerals without all of the calories...basically if you eat fruits 'of the season' all year round and a good healthy quality of them daily as well as lots of green veggies in steamed form then you should be ok...but add sea salt to your veggies. Sharon [ more ]
grandmaof1 I only drink Smart Water and Target has a brand also and both have electrolytes in them. I am so glad I found them. Krogers have Smart Water on sale this week. Buy 15 and they are only $.67 each. I stocked up. This is all I drink now. I do feel so much better. I also hate bananas but I found that I love dried banana chips. So that may help me also. Maybe this will help you out also. [ more ]
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J-Pouch ForumsGeneral Discussion
Stricture anastamosis site ??
vstRN liz11 - Thank you so much for your post. I am going to get a scope tomorrow to see what is going on. My surgeon's nurse is leaning toward stricture - thank you for the warning. Ughh... doesn't sound fun. Did you need any dilations after that one? [ more ]
liz11 could be an abscess or stricture. I had tons of mucous discharge between 2 and 3 and then it reduced but I ended up having tons of pain. Seems I had a stricture, so I ended up having to have a dilatation under anesthesia between step 2 and 3. Just be forwarned if your surgeon tries a little look and see in his office first. OMG.. that was the worst pain I ever had. After that failed office scope he scheduled the dilatation for 2 days later. [ more ]
vstRN My GI was recommended by my former GI when I was living in Chicago. He then recommended my surgeon who he works closely with. I adore both of them. And yes, I'm a nurse but not at NYP. I'm actually a nicu nurse so absolutely no help when it comes to all of this. [ more ]
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J-Pouch ForumsGeneral Discussion
Hulless Popcorn?
mgmt10 Mmmmm Pirates Booty is the best! My kids favorite snack. [ more ]
KangaRoe I do have a problem with popcorn and corn on the cob but my sister-in-law turned me on to "Pirates Booty". I like it better than popcorn. It is just like popcorn without the hard hulls and it comes in different flavors. My favorite is the white cheddar. Yum, give it a try. I bet you like it. KangaRoe [ more ]
vanessavy I don't get the hulles even though I should, it is better for your teeth. I found out I can eat popcorn with my BCIR at an awesome restaurant called Salt&Fat in NYC. They bring out popcorn popped in bacon greese instead of bread! Another way I pop it is now in coconut oil. All natural and the flavor with the coconut is really good! [ more ]
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J-Pouch ForumsGeneral Discussion
Exam Under Anesthesia/Update
CeeeeCeeee Thank you so much for sharing your experience so completely. It sounds as though you had and are having the very best of care. Best wishes for a thoroughly positive outcome! [ more ]
n/a I just wanted to add, for those interested: there was NO PREP for this EUA other than not eating/drinking past midnight. No fleets, no drinks, no nothing. The surgeon and her assistant just said "they don't do that here". So I just have to wonder why they're required for pouchoscopies by so many doctors (including Shen).... [ more ]
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J-Pouch ForumsGeneral Discussion
FYI just 2 articles on Malignancy and complex fistulae
tammykathleen Super. That just cheered up my day [ more ]
n/a Yay. Something new to worry about. [ more ]
kathy smith Oh that's lovely, isn't it? I couldn't get the links to work but I can just imagine how happy the articles made you feel. I guess there's nothing to do but wait around. Hopefully it will never be something you have to deal with. kathy [ more ]
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J-Pouch ForumsGeneral Discussion
New information on probiotics
n/a I too have been taking probiotics forever and have not gained weight through the years; I haven't been terribly careful with what I eat, but only lately have been trying to eat as Rebecca described, and probably most importantly, don't eat a lot ... [ more ]
Rebe0505 i do not buy that study..there could be so many other factors like is everyone eating the exact same foods everyday that is the people they test,how many calories are they taking in and so on.... i do not get direct connection to probiotics.. i take them and manage my weight fine its because i am careful of what i eat.. if i eat certain things i will gain weight.. if i don`t i will not..i need to avoid sugars(sweets) and bread mostly...and i have to increase my protein intake and lower my... [ more ]
skn69 I was thinking the exact same thing Jan, Darn! Another reason (excuse?) why I can't loose weight! Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Hernia repair
TE Marie I had incisional repair surgery that he was going to do laprosopically that ended up open as it was too large. I'd suggest to take care of it while it's smaller, if he thinks it is going to get bigger. [ more ]
skn69 Hope, I won't tell you to live with it although for some it is possible...I would say that laproscopic surgery is more or less a walk in the park compared to everything else that we have lived through...I had a small per-stomal hernia that grew quickly and caused countless problems...they fixed it traditonnally twice and then had to fix it through laporoscopy...much easier and a much better fix. With lap surgery you go in in the morning and can be back in your bed that night or the next... [ more ]
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J-Pouch ForumsGeneral Discussion
Takedown questions ???
Dog I had iced sugar cookies. The burn on the way out was almost unbearable. Stay away from surgary foods in the beginning! Rice and soup are your friends. I also convinced them to let me suck on cantelope and watermelon, as long as I promised not to swallow them. So tasty. [ more ]
Ro one of the first substantial meals i had in the hospital was grilled cheese and french fries, which they said is their "test food" post op....looking back, i wouldnt have gone that intense.......i ended up sticking to eggs and toast the rest of the time i think.....bagels maybe..... [ more ]
Former Member Everyone's different. I had california rolls and cooked-type sushi the day after i was released from the hospital with no problem For me cheese was (and can still be) pretty horrible. Pretzels, bread, pasta with a non-tomato based sauce, potatoes, and lots of soup are foods I would recommend. -Sara [ more ]
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J-Pouch ForumsGeneral Discussion
jpouch soreness
Ro i dont knwo what it is, but my best guess is that its just sore from all the squeezing. and possibly the remainder of our colons just getting irritated from the same thing. hmmm. [ more ]
Alexis Exactly! [ more ]
Ro i get a soreness feeling in teh pouch area, more by my tailbone, and it also comes and goes. id lilke to know what it is too. i feel like for me it COULD be diet related, or it also just seems to happen more often when im going a lot, or toward the end of a 24 hour period where im into my 8th 9th 10th crap of the day... hmmm... [ more ]
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J-Pouch ForumsGeneral Discussion
Surgery 2
TE Marie They had to cath me too like mgmt10 - the nurses did it in the room, ouch. I had my first BM 12 hours after the surgery but my female bladder wanted to take a few days off. [ more ]
ju330 I just had my ostomy closed almost three weeks ago. I was in the hospital for exactly one week. It was an easy stay, though- I wasn't catherized either, and was up and moving around very soon after surgery. I would definitely say that the surgery itself is a quick recovery. [ more ]
Holly M The average is 3-4 days. However, complications can arise you are not prepared for. My stay ended up being exactly two weeks. My bowels woke up then went back to sleep and I had to have the NG tube put in, then I got some fluid pockets in my abdomen and had to have drains put in. I am 8.5 weeks post op now and feeling so much better and back to work. Hopefully you won't have any problems and you can go home in the normal time frame. I was not catherized. Had to get up to pee not long after... [ more ]
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J-Pouch ForumsGeneral Discussion
Pls read and reply
JGeorge Hi Liz11/ chiromancer, agree with you, no anal closure at any price,,, you can close it anytime later when you are sure that everyth went fine. For me my surgeon, removed the fistula, made a perminent ellio (fuel tank for sex machine:-))),removed maby 70% of my Jpouch and left around 10 cm which were severely inflammated, and guess what, he close my a**. of course after 2 weeks he was forced to reoped it again:-(( I'm confused as some persons says that it shouldn't be resky as he planned to... [ more ]
JGeorge Ops liz, I started to worry:-(( Liz could we skype about it pls [ more ]
chiromancer I would think Canasa might help along with cipro. It is possible to remove the pouch but not do the anal closure. This is likely what I am going to have done. According to my surgeon the general complications arise mostly from the anal closure, it is a difficult wound to heal for some people. Pouch removal to the connection point at the rectal cuff varies in complexity due primarily to the amount of adhesions. Since you have a fistula that would be another issue. I was told pouch removal and... [ more ]
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J-Pouch ForumsGeneral Discussion
Can't catch a break
bratcat Thank you Kathy and toughenough for responding. I will definitely be calling the doctor's office Monday morning. And I will probably play the bleeding pouch card. The faster I take action, the faster I'll be under control and I can focus on other things. toughenough, I don't know if the test I was going to take has modifications. Plus, I probably wouldn't have thought to apply for them since up until recently I was doing great. I was diagnosed with UC in high school and had a 504 plan, which... [ more ]
TE Marie I had blood with cuffitis like you describe and didn't do anything about it thinking it was normal. By the time of my first year scope I had graduated to having a lot of pure blood every couple of days in the stool. Diagnosis - cuffitis. You are doing the right thing in checking it out and Sue is right, the blood you are seeing is increasing and you are anemic. If it's not cuffitis it could be something else pouch related that is bleeding and you need to know and get better before your trip! [ more ]
kathy smith Bleeding is usually an indication of cuffitis. But the vessals in that area bleed very easily. It might be nothing. If your doctor can't get you in sooner then pull the 'bleeding pouch' card - that might hasten things. And that's certainly not to say that you need to see someone right this minute but it seems that you need to see someone just to ease your fears. I've had that bleeding thing and it turns out to be nothing. Hopefully that's your diagnosis as well. I hope you get the fatigue... [ more ]
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J-Pouch ForumsGeneral Discussion
SCD diet
Moneyball ❤️
Olive Oil Paleo goes back to Hunter/Gatherer type of diet and you eat lean meats, fruits and veggies but nothing really processed, no dairy, gluten, or grains. It has not cured my Crohn's but it has lessened my symptoms to a point where I can actually feel somewhat "normal." As you know with a J-pouch we go quite a bit but Paleo has slowed things down and thickened them up. I'm not promoting this at all as a cure but a tool you use to aid in managing the disease. Check out the link below and you'll... [ more ]
Catinthehat I tried the SCD prior to colectomy but found it too rigid and could not stick to it. Frankly, I don't think any diet can overcome an autoimmune condition as severe as UC. [ more ]
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J-Pouch ForumsGeneral Discussion
Metformin and Crohn's or J-Pouch
CeeeeCeeee Have J-pouch. Take Metformin....have for about three years. No effects I'm aware of. [ more ]
KangaRoe Jan, I am going to talk to the doctors but I will stick it out. I have been giving myself the enemas and I am already seeing improvement. After seeing your post I am pretty sure it is just one of my flares and not the Metformin. Thanks again for your wisdom. KangaRoe [ more ]
Jan Dollar That's why I asked, since the side effect is also a disease symptom for you. Are you going to try to stick it out a little longer, or ask to switch to something else. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone have pouchitis and NOT on antibiotics?
vanessavy According to what I know. The pouchitis has to be in remission to fight it with probiotics like VSL. [ more ]
mgmt10 Hi kjeane, I don't have any experience with pouchitis (yet) but I was reading about natural antibiotics. Maybe this would be something that would help you if your pouchitis isn't too bad. Dr. Oz talked about it on his show once too. Google natural antibiotics and a whole bunch of stuff will come up. Garlic I know is one and there are many others. Maybe worth a try? [ more ]
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J-Pouch ForumsGeneral Discussion
The screaming has stopped.....
TE Marie kjeane, I hope you are feeling better and it sounds like you have found a good local GI! [ more ]
jeane Grieving, I understand your apprehension. I was repeatedly told I had low grade dysplasia in my colon (with second opinions indicating it was indefinite). I didn't care how much I read about how difficult it can be to distinguish LGD from inflammation, I was REALLY pissed off when my colectomy came back clean with no dyplasia and I was left dealing with the outcome. I swore no one but my surgeon would ever touch or scope my pouch. Well after a year and almost 30000 OOP in numerous medical... [ more ]
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J-Pouch ForumsGeneral Discussion
...
Jan Dollar Quite interesting. However, I hate it when newspapers and such use IBD and IBS interchangeably, as if they are the same. Clearly, the study was about IBD, and now people are going to think that this gene defect is going to have something to do with irritable bowel syndrome. Just a pet peeve I guess. To me it is very interesting how they keep finding links to the microflora/fauna in the gut as being related to so many diseases. The evidence is much more solid than any food related... [ more ]
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J-Pouch ForumsGeneral Discussion
How do you scream on the computer?
Former Member I can relate. In so many situations over the years i have felt like a guinea pig! 6 months after my surgery I had an emergency hystorectomy and I had told the dr. that he had to call my GI first and he assured me he did and felt ok to do the surgery. After the surgery I realized he had opened my entire scar again and it should have only been a tiny cut. His response was, " I never saw a j pouch and was curious as to how it functions." I was furious and so was my GI. I ended up having 2... [ more ]
kathy smith Since we are all more educated on j-pouches than even many doctors I think we tend to forget that there is just too much about the human body that can rear its ugly head that doctors are stumped about. I was thinking this yesterday when reading about those FAP'ers Whipple procedures. Whipples have been mentioned here a number of times and I was thinking that I should at least have cursory knowledge of them. But I don't. Everytime I see the term I visualize some sort of plaything (Whiffle... [ more ]
Srf1 I had part of my left lung removed back in 1978 due to a major infection resulting from Pneumonia. In 2004 following a chest x ray I was sent by my PCP for an MRI to check a "large shadow" in my left lung that showed up on the x ray. The shadow turned out to be the missing lobe from my earlier surgery. Same thing, the radiology tech reported it to my PCP who didn't even open my chart to look at my previous medical history. It's frustrating that all of this stuff get's documented in detail... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch Scope Questions
Former Member For my first few years after surgery i did use my surgeon for scopes. I live in East TX and he is in Dallas TX. I found a GI Dr here but he does not do surgery. However he is very familiar with the j pouch, is very capable of removing all growths that have came up over the years. He just removed two that we thought were too big to come out through a scope but we went to a different hospital with a special scope and he did it. I am very pleased and if major problems come up I still go to my... [ more ]
bratcat The first 3 years after my surgery, I had yearly scopes with my surgeon. I wasn't seeing a GI because there was no need. After getting pouchitis last year, I went to a new GI (pre-surgery I had a pediatric GI). My GI wanted to take a look for himself to see what he was dealing with. I think as long as the GI has an understanding of a pouch, it is fine for him to do a scope. As for prep, it was no food after midnight and both my surgery and GI had me do a fleet enema....much to my dismay. [ more ]
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J-Pouch ForumsGeneral Discussion
Ileostomy Products
CeeeeCeeee I sent my left over ostomy supplies to FOW....Friends of Ostomates Worldwide. They have a website. They supply ostomy supplies to people in countries where getting these supplies any other way is almost impossible. [ more ]
Former Member I think Coloplast makes the best products. I understand why she feels this way b/c they can be unsightly. However, I got very creative with tape. I mold my 10 1/2" bags into a much smaller bag that I wear during the day. I order Leukotape that holds very well and does not come off (Leukotape is something used in PT clinics). The first thing I do is tape the top part down that has the filter. That already makes the bag smaller and since the filters do absoultely nothing as far as I'm... [ more ]
Former Member I was going to say all the same as randi! It will also depend on how much output she has. My son is 8+ now but has had his ostomy since he was 3. He uses the big ol 12" bag so that he can get mostly through the night. He wears what is called a care-fix by a company called nu-hope. It is almost like an old fashioned tube top that he tucks his bag into so it doesn't hang out. There are many belts and products on the market but he likes this one the best. Ostomy secrets has some good ones too. [ more ]
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J-Pouch ForumsGeneral Discussion
Pain in the butt
Tyler44 I have asked my doctor about it. He said that it could be muscle soreness just from going to the bathroom. Kelsey your explanation would make sense. It would be nice if it would expand. Thanks [ more ]
Former Member hi there! i get this too and im three months since everything was recconnected . i think its the pouch stretching out as it bbegins to fill up. the pain has lessened for me but unless there's actually something seriously wrong that pain is a good thing. you want your pouch to expand...makes the time between bms alt longer. good luck! [ more ]
kathy smith This could be normal. I would assume that it's not an abscess since the pain tends to lessen when you sit. But you never know. Have you talked with your surgeon about this? kathy [ more ]
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J-Pouch ForumsGeneral Discussion
Ever use your ostomy or jpouch as an exucse to get out of a ticket?
Not your average gal! ❤️
LionsPride Just like any other profession there's good cops and ****ty cops but I try to remember what it's like to do their jobs. Especially if you're in an urban area like much of my family. They deal with the worst of society on a daily basis year after year and it takes a toll on their eventual outlook. [ more ]
kathy smith LionsPride - I agree. Law officers often get a bad rap and that's unfortunate. I have family and friends who are in law enforcement and are firefighters. We all just need to be a little more respectful and a little more aware of an officer's (or firefighter's) job (no troopers out here so I think I'm good on that). I can't even imagine being in law enforecment in Seattle these days. I don't know how they hold it together with all those people out to shoot them. And I feel the same about the... [ more ]
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J-Pouch ForumsGeneral Discussion
Emergency Denied
suebear I agree that Kathy could have come up with a better reply. The one that comes to my mind is that your posts often ramble. It would be ideal if you could stick to the point instead of adding paragraphs of superfluous information. Sue [ more ]
CTBarrister They are offensive only in your mind. I used very general descriptions applicable to real world situations and not to specific people. They were meant to cover possibilities of what could happen within the realm of one's experience. I would think you would have better things to do than copy and pasting a litany of quotes in an effort to belittle me or my writing style. The only thing that is offensive is your post and the fact that someone would waste time copying and pasting posts to make a... [ more ]
kathy smith All these labels are offensive. I think you are intelligent enough to get your point across without belittling other people. kathy [ more ]
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J-Pouch ForumsGeneral Discussion
what did you do the month/week/day prior to surgery?
CeeeeCeeee My j-pouch is "food friendly". It has been for the ten years I've had it. It hasn't met a food it doesn't like. Or a drink, for that matter. So.....I like the advice which says eat what you like and be sure to walk....now and again as soon as you can post-op. Congratulations! [ more ]
Jpouch8888 My surgeon said to walk everyday. Surgery is a big shock to the body and said it is best to be as fit as possible beforehand. Also, eat nutritiously and drink lots of water. Also, go to the library and rent lots of books and movies to watch for during your recovery. [ more ]
Former Member It's definitely good to live in the moment and not stress yourself out over what tomorrow will bring. On the other hand it is wise to be prepared so you can achieve your goals for tomorrow. That being said, I too am soon to have take down after waiting over a year to have it. For me I feel it is important to nourish my body with healthy food choices, supplements and exercise to prepare my body for healing. I would rather go in feeling strong, healthy and ready than to feel bloated and tired. [ more ]
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J-Pouch ForumsGeneral Discussion
Blockage
Former Member Thanks a lot for the advice. I am doing a lot better now. I am not passing much gas anymore but I still have some growling when I drink water. Currently, I just drink lots of liqiud and skip any solid food. I'll remember drink lots of water whenever I eat any peanuts [ more ]
kathy smith If you think you have a blockage, the things you took wouldn't be the best thing for it. In the future don't take bowel slowers (Imodium) or pain killers (they also slow down the bowel). Don't eat bulking foods like bananas and ramen. Drink liquids, move around as much as possible, take warm baths or use a heating pad if you're in pain. Drinking warm water is good. I've forced myself to vomit when I've had a partial blockage - that offers a little relief. I've also jumped up and down (trying... [ more ]
beckysmom Is your stomach extended and hard? Have you vomited? These are the signs when my daughter has a blockage, distended abdomen and waves of pain. She finds walking and even getting on her knees and butt in the air and swaying from side to side sometimes helps. I think I have read on here if you start vomiting a lot you may need to head to the ER. I don;t know about the warm water, but it sounds like it could help. Maybe someone else will come along with more to add. Hope is resolves quickly. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Ileostomy output
kathy smith That's the nature of the loop ileo as everyone has said. No worries. If she's feeling okay then she is okay. Everything should get much better once she has takedown surgery. kathy [ more ]
CeeeeCeeee I found no comparison between the liquidy output when I had an ileo and the nature of the output once I had the takedown. When I had the ileo I was frequently dehydrated and had several hydration infusions over time in the E.R. Then, I tried thickening the output by eating/drinking Metamucil. It did the job but the Baggie was so much more timely to empty that I stopped using it. I was careful to drink Vitalyte-type products. Best wishes. [ more ]
Former Member I have an 8+ year old who has had an ileo since he was three. Output color changes all the time. His is mostly pretty liquify all the time. What we watch out for is a big increase in volume. In the beginning we measured all his ins and outs to learn what was normal for him. I still do most of the emptying so I know when there is more than usual or if his bag is filling up quickly. I wouldn't give her anything without talking to the doctor either. How long has she had the ileo? [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchitis again =(
kathy smith I was going to suggest maybe it's gallbladder pain you're experiencing because of the diet - fatty and greasy. But the pain is on the left side. But who knows, maybe the gallbladder stayed put on the right and sent the pain to the left. I hope you figure out how to resolve all this and there are no more face plants in your future. kathy [ more ]
Jan Dollar This sounds more like cuffitis to me, because of the bleeding and the fact that antibiotics did not help last time. For cuffitis, the treatment is mesalamine or hydrocortisone suppositories. You can call your GI and see if he will give you an Rx in anvance of your appointment. The diet issues just serve to exacerbate symptoms, but do not cause pouchitis or cuffitis. It makes sense to avoid these things that irritate, at least for now. Then once you are better, moderation is thekey. Jan [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
considering surgery.
SBS Hi Ellie. I agree with Becky, if you're seriously considering the surgery, it's best done when you're relatively healthy. No doubt about it, it's a tough procedure. With that said, though, the body has amazing abilities to adapt. Mine was done 23 years ago this summer and I am very pleased. Like others, I think it was easier for me as I had no decision; that colon was coming out! As others have said, life with a jpouch is not the same as life with a colon, but you adapt and adjust. Prayers... [ more ]
Becky Boo Ellie -- My best advice is if you're considering surgery, do it while you're feeling relatively well (even if you're fatigued)and not wait until it's emergent. It will be a much easier recovery. That said, I had UC for all of about 6 weeks before I was shipped off to surgery emergently. I was actually relieved to have that decision made for me, as I'm not sure I would have willingly done it, but I was so happy (immediately) not to have to face a long-term life of heavy medications,... [ more ]
CeeeeCeeee I had the first step of this surgery when I was 61 and the second step when I was 62. Wonderful results! My surgeon has successfully performed this surgery on 70 year olds so I guess outcomes are determined by many factors, one of which is probably age. I'm now 72 and all is well! [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
back to work
SBS Congrats, Holly. You're one step closer to life returning to "normal"; whatever that may be...lol. Prayers and best wishes in your continued recovery, Steve [ more ]
Debthetraveler That's great news! I went back to work in mid April. I, too, worked half days the first few weeks. At first I was stressed out because of the potential unknown's and what to expect for bathroom usage. I've been lucky and have far fewer bowel movements from morning til late afternoon. Keeping busy and focused on work, definitely helps! My job requires that I travel(usually within an hour or two) a few times per week. I never thought that I would be able to do this already. My struggles seem... [ more ]
CTBarrister It's always great to go back to work when you enjoy your job, and your co-workers. Glad to hear you are back in the saddle and doing your job. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
The wait is over
Srf1 Hi Kathy, I've still got to make an appointment with the surgeon and work out the details. Hopefully that will be in the next week or so. Dr. Varma is going to be my surgeon! If things roll along I'm guessing surgery will either be in late June or early July. Thanks to everybody for your support. [ more ]
mgmt10 Best wishes for a speedy recovery! [ more ]
kathy smith Congratulations and welcome to the fold. Where are you having the surgery done and who's doing it? kathy [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
New pain
kathy smith I also think it might be adhesion pain. You might want to try massaging that area to try to get them to release. There are also massage therapists who do that. kathy [ more ]
mgmt10 WishingWell brings up a good point about getting it checked just in case it's a hernia. [ more ]
Wishingwell Hi Jeff I have lower abdomen pain on and off for +10 years. I have had MRI scans and various other tests performed in an effort to get to the bottom of it. It has always been put down to adhesions, except on one of the many occasions I had an obstruction where I had to be operated on, when they discovered a hernia as well as adhesions. The discomfort/pain is just a part of life now and I only get concerned about new pain. May be worth mentioning to your doctor if it continues though,just... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Ginger tea
ju330 Mmmm, ginger tea! That was one of the few things that could settle my stomach when my UC was flaring. I'll have to try some now and see if I have the same effect you do with my j pouch. [ more ]
vanessavy Try the instant ginger tea. Get it Asian stores. It should be 100% ginger. SO good! [ more ]
SarahXYZ damn, sriracha sauce! we have different tolerances. I do find ginger in my food to sometimes be too much (garlic too) and I think that the packaged nature might actually help me because it isn't as strong. that said, I do intend to try fresh made ginger tea to see if I can tolerate it just as well. but at $2/box for instant and such good results, it's not broke, so no need to "fix" [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Butt burn or something else?
mgmt10 Yes it can burn on the inside as well so what you are experiencing is normal. Get that Calmoseptine. It's a life saver. For me, nothing works better than that stuff. I don't get butt burn all that often but sometimes certain foods will do it. [ more ]
See 1 reply...

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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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