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J-Pouch ForumsGeneral Discussion
Can you go out at night time?
fqfq
Kline84 I noticed that the more I think about it the more I have to go. So if you can engage in interesting conversation or activities that take your mind of going to the loo it helps. Sort of like when you were a little kid faking sick to stay home, after having to act and convince ur mom u were sick u eventually start convincing yourself and actually feel it. If I keep worrying and my mind is telling me I'm gonna have to go a lot then it actually happens. Another thing I found that helps is humor. [ more ]
little greeny I would agree with Sue. Go out and have fun !! I go out pretty much every weekend and often on weeknights. Like was already said, you are probably a lot more worried about what your friends think of you going to the bathroom then they really are. In terms of your increased motility at night, do you tend to drink more carbonated drinks at that time? If you are drinking soda, drinking out of a straw or chewing gum you may notice increased gas. Also check out the J pouch diet. I was eating a... [ more ]
mgmt10 Spooky brings up a good point. My girlfriend pees like every 20 minutes! (overactive bladder) We j pouchers are not the only ones who have to make several pit stops along the way! [ more ]
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J-Pouch ForumsGeneral Discussion
How do you feel the day after alcohol?
MJ Manuel J.
Former Member ❤️
Specks ❤️
Kline84 I have not had a binge night but I did drink three red beers and a couple regular beers while up camping with no I'll effects. Maybe a bit more gas in the morning but it did not last long. It sure was nice to feel like "one of the guys" again! I have since had a few vodka cranberries also and was fine. I am scared to drink enough to get drunk though because I fear sleeping to hard and not waking up to use the loo if needed. I guess you can say that the j pouch turned this 28 year old into a... [ more ]
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J-Pouch ForumsGeneral Discussion
Low iron and CBC
C chrfor
LionsPride Low iron is one of those 'gifts' a lot of us have from the UC, even after the surgeries and with no bleed. As others have said, sometimes the infusions are necessary initially if your levels are really low but often the supplements taken daily over a long period of time are enough. If they didn't specifically mention it look for a type of iron supplement called 'slow FE'. It absorbs more slowly and is a little easier on the stomach. [ more ]
vanessavy Oh I have tried it all. You name it I have been on it for my leg cramps. My disease causes the cramping in my legs and the tension that never releases. They get worse when my iron is low. When I get an infusion they feel a lot better. [ more ]
mgmt10 chrfor, I don't know if I would consider myself still weak but I get exhausted very easily. I do not have much stamina. I get winded just climbing stairs and I have to catch my breath. It's really annoying. My body has learned to deal with it because I have been chronically anemic for 7 years now. It's so hard on all your organs though. I'm confident that if I get iron infusions I will get this under control. [ more ]
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J-Pouch ForumsGeneral Discussion
Seeking opinions
HemingwayHemingway
Tommy pb Yes you should see your gi or surgeon to make sure all is ok. Also make sure that your not anemic. After my surgery I remember becoming very weak and it turned out I was very low on blood. Wish you the best of luck! The body is amazing and does adjust with time. [ more ]
little greeny I agree with everything that has been said. It DOES and it WILL get better. Give it time. One suggestion at this time is to consider energy conservation. Remember to take naps if you can (if you can't just take time to lay down and relax, don't do too much on your "good" days and don't spend a lot of time worrying. Take time for you, to do the things you like a little at a time. Trying taking a hot bath and drinking some warm milk before bed. Do not watch tv or do anything over stimulating... [ more ]
liz11 couple things to try: try sitz baths, try eating things with tons of protein, and don't be shy about trying some mild over the counter sleep assistance- even baby benadryl. You need to get some rest to heal.. AND to be able to think clearly about your quality of life and big decisions. Also you may need to slow down transit time for your body to more fully absorb nutrients. [ more ]
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J-Pouch ForumsK-Pouch Korner
Madison, WI doctor for scope?
J Jasmine 2
Jasmine 2 Thanks Janice....yes I am nervous about someone scoping me without knowledge of ever scoping a Kock Pouch before. So hopefully my insurance will cover this specialist in the future. As, there is always a chance of a perforation with a scoping with a colon or without. [ more ]
JaniceM Hi Jasmine...yes us with long term awesome KPs are very relunctant to have a non specialist scope. I am very lucky, my GI dr in my hmo group is familiar with the KP and does mine. He uses a very small child size cath. He is not able to do it in his office (like the surgeons usually do as you know) so it's done out-patient endoscopy. I can get sedation if I want. It's nervewracking for sure. I don't know if you've called around to find someone. I hit the jackpot as I was in the hospital for... [ more ]
vanessavy Yes some don't but many do. I have 4 in my area that can scope me. 2 surgeons and 2 GIs (in case one is out of town, etc.) Plenty will learn as well. IT isn't hard. The scope is the size of the catheter that is used, you can be awake during a scope as well. [ more ]
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J-Pouch ForumsGeneral Discussion
Ostomy #3
C Cate87
jeane I am so sorry for you Cate. I know how rough this has been. Was your surgeon able to explain why the fistula reappeared and did you sense it was appearing before passing stool the way you were? I think you are doing the right thing in letting your body recover from all the trauma you have been through. Get healthy and finish school and then revisit the surgery. By then, they may even perfect it to a greater degree. At any rate, your body will have time to heal and repair and for you to get... [ more ]
tammykathleen Cate, I am just so sorry to hear that after everything, you now have to deal with this too. You have been through so much crap and I wish the outcome had been better. I am sorry. ~Tammy [ more ]
Cate87 Beginning of June*** [ more ]
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J-Pouch ForumsGeneral Discussion
Level of control - question for experienced j pouchers
C chrfor
notsotough Just a thought- I had no problems holding but the pain after emptying turned out to be a stricture. I had it dilated and for a few weeks - no pain after emptying but it seems to be creeping back. However reading others posts it does seem that for a stricture one dilatation is not ususally enough. at least I am not worrying that it is something worse. ps I am seven months out from takedown [ more ]
CTBarrister I have had the J Pouch for 20 years and, except for periods of untreated pouchitis, control is better than it ever was when I had UC. Control is as good now as it ever has been, so long as I am on antibiotics. Even in a pouchitis flare, while there is urgency, I still have the ability to control. It's not total loss of continence and massive stools in the pants as I had many times with UC. [ more ]
chrfor Yes during the day and at night. I can hold it pretty good but I have awful rectal pressure - even right after I go. Hoping that gets better with time. Thought by 3 months out that would go away by now but guess I have to be patient. It makes me nervous to leave the house at night because I always feel like I have to go - even right after I go..... [ more ]
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J-Pouch ForumsGeneral Discussion
Questions on Strictures/Treatment of Strictures
CTBarristerCTBarrister
Ray C Dear DJB, I had nothing to add, just sorry to hear your illness is taking a lot out of you. Hope things turn around soon. Ray [ more ]
CTBarrister I think my Doctor thought that the Entocort would kick in after 2 weeks of taking it with the antibiotics and that I would be able to go off the antibiotics. When I reported these problems to him he told me to go back on the antibiotics and that the Entocort may have needed more time. At this point and after experiencing the sensations I had in my gut this weekend, I would certainly rather play it safe. The plan now is for my Doctor to study my recent MRI alongside my 2008 CT Enterography... [ more ]
Rebe0505 djb putting in my two cents here maybe all this latest develpoment is because you went off antibiotics..i can tell you that one of my awful symtoms when antiobiotic not working or if i were not on them is this terrible feeling of not emptying and straining to relieve myself.. like i have a stricture..so maybe it is just simple like that..my problems presently fall in pouchitis category but i sure as heck have that issue aside from some other goodies i know you did not have like severe... [ more ]
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J-Pouch ForumsPouchitis
Pouchitis situation. Flagyl only and VSL3. Please help.
T Tigowoods
Tigowoods Thanks Rebe I have upped it and feel a little better. I seems to me that I might have the same thing. How long can you last though? It only lasts so long right? [ more ]
Rebe0505 i would forget the the probiotics and think getting what appears to be a form of good old pouchitis under control with antibiotics..when i have have pouchitis my burning is so bad i think its all raw in there and bingo when the antibiotics work it just goes like that..so if the upped flagyl does not work there are others..cipro mentioned but also keflex,tindermax and i am presently on augmentin..i have antibiotic dependent pouchitis in other words with out being on antibiotics at all times i... [ more ]
John95 There are many other antibiotics that you can try besides Flagyl. Cipro would probably be the next one to try if you haven't already. [ more ]
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J-Pouch ForumsGeneral Discussion
Did Asacol ever work for anyone?
Rich_1976Rich_1976
Jan Dollar I was in remission (with a few minor flares until my final refractory flare leading to colectomy) for nearly 24 years with Azulfidine, my husband has been in remission for the most part for about 10 years with Asacol, and my son has been in remission for about 4 years with Colazal. These are all 5-ASA drugs and first line treatment for UC (due to generally good response and low rate of side effects). Since everyone here either had colectomy or is heading for it, naturally they would have... [ more ]
rustyskyline My doctor prescribed Asacol HD 800 for the treatment of Chronic Refractory Pouchitis. Is there anyone else taking Asacol for this? [ more ]
Brian E. I used to love taking loads of Asacol and then seeing them essentially whole in the toilet. It was like a joke, a friggin' joke. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Passing gas through vagina
C Cate87
liz11 cate.. with diverting they leave the jpouch inside you and just bypass it with the ileostomy. Sounds like maybe thats what you had before. Permanant one is when the remove the entire jpouch. I'm wondering that even if they did a diverting one before and fistula didn't heal, can they still do it again right now just so you can start living your life and get you a good start with grad school? [ more ]
Cate87 What's the difference between a diverting ileostomy and a regular one I guess? I had a temp one before when I had a rv fistula last year. They tried having the fistula heal on its own and it didn't. [ more ]
liz11 cate.. I'm so sorry to read about your ordeal. You could opt for a diverting ileostomy which would possibly allow for your fistula to heal but more importantly could get you back your quality of life and get you onto a good start with grad school. I was very quickly recovered after my jpouch was disconnected with a diverting ileostomy. I think I was back to work full time in 3 weeks from surgery date. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Whitewater Rafting
B beucfree
beucfree Thank you for the advice and encouragement. All went fine. We had a lot of fun. It was half a day trip starting at 2:30, so I had breakfast and then drank protein instead of lunch around 1pm. Used the bathroom before getting in water and I did just fine. Thanks! [ more ]
suebear Of course you can! Get out and enjoy life...and let us know how your trip was. Sue [ more ]
Goodspeede You should be just fine! I live, work, and play in an area with whitewater rafting and I have never had a problem during a trip. If your stitches are all healed up, then level III rapids should be okay to paddle in - they are perfect, not too big and not too small. For extra reassurance, I would inform my guide and he or she may be able to place you on the raft in a position where you might not need to paddle as forcefully. Also, if the trip is long (where I live they are about 6 hours) I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anti fungal cream ???
L LilMoe03
Subzeromambo Over the counter Monistat until dr called in a Nystatin prescription. [ more ]
NurseAlex Another Prescription cream for yeast is Nystatin... Worked very well for all three of my children when they got it from diaper rash one time or another when they were babies. Sometimes mixing nystatin with a mild cortisone cream can be very soothing as well as having the anti fungal treatment. [ more ]
SteveRM My surgeon recommended Balneol. You can get it at Walgreens. It has worked ok and use it after each bowel movement. It does have yeast fighting ingrediantes. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Melsalamine & Canasa HELP!!
G grandmaof1
grandmaof1 Thanks KJeane!! All I have now is patients. I just try to live each day as it comes and deal with what comes my way. I truly love the support I get on here. Makes it so much easier Again thanks, [ more ]
jeane I too had pouchitis from day and one one year later I am still on antibiotics and also taking canasa suppositories intermittently for cuffitis. I will not lie to you in that it has been a very long year for me. When it comes to pouchitis and most inmportantly pouchitis that becomes chronic, unfortunately, it is a guessing game to see which meds give you the most relief with the least long term side effects. I also experience flu like symptoms with my pouchitis which includes sore muscles and... [ more ]
grandmaof1 I forgot some important information. I had whole colon removed Jan. 2012 for precancer cells. And then my take down March 16th, 2012. So all of this is new to me. Learning something new each and everyday Seems like I have had pouchitis right from the beginning. Once I started taking it I felt great. T [ more ]
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J-Pouch ForumsHelp! Need advice now!
9 yr old son, what can he eat?
L LilMoe03
Subzeromambo I am one month out from the j-pouch take down and I agree with your son. There are days when the butt burn is so bad I am afraid to eat. On those days, I stick with a liquid only diet--mainly Ensure Protein Plus Vanilla. There is also a lactose free version. The case you have may be lactose free. If it is, it will say so on each bottle. It looks milky but does not contain any dairy product. Chocolate, sugars, fats, dairy products, red meat and gluten products go right through me with a very... [ more ]
LilMoe03 Well last week i mention symptoms and he said my son aint having cramps or pain. He farts fine and poop is mushy. So he is good. [ more ]
liz11 Has his surgeon truly ruled out pouchitis? Did he do a scope? Just saying... as my surgeon blew me off with these kind of symptoms after surgery. I ended up back at my GI who immediately did a scope and told me I had pouchitis. And yes,.. try to stick to the thickening up foods. Try to get the transit time slowed down. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Any ideas?
LaurenMacLaurenMac
John95 A GP would probably write a prescription for Cipro or Flagyl for you, especially if he's followed you for a while and knows about your GI health. Also, the more convincing you sound, the more likely it is you'll get it. Worth a shot! [ more ]
LaurenMac SO frustrated! The GI I wanted to see is out of town til mid-August, so I asked my GP for a recommendation of another one, and that GI can't fit me in for another two weeks. Can a GP diagnose Pouchitis and get me Flagyl or Cipro? [ more ]
LaurenMac Thanks everyone! This forum is a life saver I'll call him up today and get started on those meds as soon as possible. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Colyte Prep? Seriously? Even with no colon?
albertagirlalbertagirl
CTBarrister albertagirl, I don't think I ever had that prep with the J Pouch but I did when I had my colon. My pouchoscopy prep was what kjeane described, fasting and enemas. No oral laxatives. Did you confirm with them that you have a J Pouch? Because one year I was given the wrong prep instructions by someone who thought I was a coloned patient. Assuming this instruction is correct, I hope you can get most of it down, just try to drink it rapidly and don't think about the taste of it. Because when you... [ more ]
jeane If you really want to fight this you can (in the future)and I would not worry if you cannot complete all the prep. I only managed one of the two enemas the GI requested the morning of my scope and I did just fine and as I said I have had several pouchoscopies with no prep at all other than no food or drink after midnite. If you are having pouchitis symptoms though, it would be wise to clean out as best as possible for your doc to get a good view. [ more ]
albertagirl whoops, you are right kjeane - pouchoscopy. not pouchogram. DJB - same thing yes. I can't imagine even drinking half of it! I feel sick after 3 glasses already. Nearly a gallon to go! [ more ]
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J-Pouch ForumsGeneral Discussion
lots of bathroom trips at work
Holly MHolly M
Holly M Mark, good point, being able to work and keep healthcare benefits that is what is very important to me for sure. I had a fairly good day today. Only ate a peanut butter sandwich for lunch and only had 2 bathroom trips today. It wasn't as stressful as my normal work day either so that may have played a part. Keeping fingers crossed for a good day tomorrow. I don't travel too much either (only 6hrs on weekends to go to our weekend cabin) or go out too much after work. [ more ]
Minn Mark I had my takedown in 2007 and still have lots of bathroom trips during the day and night. I do not eat breakfast, and only a banana at lunch. I eat supper at home, and typically am in bathroom 14+ times per day. This is the system I have evolved into which allows me the most productivity at work. Not great, and I dont go out much or travel etc, but I am able to work full time and keep my healthcare benefits. Try experimenting and see what works for you. Mark [ more ]
liz11 holly have a great week at work. [ more ]
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J-Pouch ForumsGeneral Discussion
gastritis gone after step 1 of 3?
G Guest
vanessavy Yea I don't have colitis but I had a vertical gastrectomy so they think that is what causes it along with trauma from surgery. [ more ]
Guest acid blockers made mine worse but the surgery made it better. only time it flares is when colitis flare and of course after friday colitis should be cured if all goes well... [ more ]
Guest acid blockers made mine worse but the surgery made it better. only time it flares is when colitis flare and of course after friday colitis should be cured if all goes well... [ more ]
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J-Pouch ForumsGeneral Discussion
J Pouch and Urgency
FM Former Member
Kline84 When I have to go it feels like pressure down below and maybe a little bloated feeling from the gas. I can hold it for however long I like though. For example the other day I was up in the mountains fly fishing and had just put my waders on and made it to the middle of the stream when I realized I had to go! Instead of going to the bathroom right away I continued to fish for a few hours untill I had waded upstream to the next set of restrooms at a campground. Not once was I afraid I was... [ more ]
John95 I second what Steve said about the feeling to go which gradually builds. You're able to choose when you want to go. It can get uncomfortable if you put it off for too long, just like if you hold off on peeing for too long. Despite this, there are times when I make sure I know where the bathrooms are, but only when I'm dealing with a bout of pouchitis. Then the urgency is definitely a problem; however, pouchitis is usually treatable, so I didn't let that possibility deter me from getting a ... [ more ]
TE Marie I have more time to get to the restroom with my j-pouch as I can hold it much better than I could before the surgeries. Best wishes for your surgery and remember you can take your time. You can go with an ostomy for however long you want to. Also after living with and ostomy you can decide when or if you want to go ahead with a j-pouch. The difference will be one extra sugery. [ more ]
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J-Pouch ForumsGeneral Discussion
abdominal workout
N new2thisstuff
liz11 of course you can work out.. as long as your doctor clears you. I have no idea why someone said you can't work your abs with a loop ileo. I did all sorts of exercise with my TWO loop ileos... including lots of core work such as pilates. Also lifted weights - though restricted a bit as to how much overhead- ran three half marathons, biked, swam. Exercising will do wonders for your recovery. Just make sure you have your doctors ok and start back slowly. [ more ]
Subsky well with the loop ileo, I'd take it easy with the ab workouts. You shouldn't have any problem doing light workouts until your takedown. Running would be good. [ more ]
dodge I'm 4 month's post pouch formation and had a leak at one of the conection points so for me im looking at least 5 months now till takedown. I had a procedure yesterday to to clean out any infection and make the hole bigger so any infection left has a better drainage point. I also has a bad wound infection which completly opened up about 7 - 8 inches but thankfully has now closed apart from a tiny hole . I'm really eager to get back to the gym as i lost 3 1/2 stone and have complete muscle... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Rectal Recovering following permanent ileostmy
gmarie1208gmarie1208
liz11 gmarie- my wound was not sewn or stapled shut. It was left open to heal. I think surgeons each have their preference of method in dealing with this wound. I have been strictly instructed to put no creams or anything in the area. My healing instructions might be different because I had major abscesses there while in the hospital and also another abscess just a month ago that burst and landed me back for another surgery to clean it up and drain it more. Sitz baths help a bit. Also, I have been... [ more ]
vanessavy I had a lot of pain and issues not to long ago. I posted on the kpouch section about it and it seemed common. One person on facebook said he used peanut butter down there. Anyway, a sitz bath might help and hemorrhoid tpe of cream. Mine formed a big lump like a hemorrhoid. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Takedown #2 on Thurs, now vag is acting up!
C Colleen2001
Cate87 Best of luck on Thursday. I have/had a RV fistula and they are a pain. I hope it's just normal discharge and that everything works out for you. [ more ]
dawn58 Vaginas tend to have normal discharge. Some women have more than others, but every woman I have spoken with (with or without jpouch), have stuff coming out of their vagina. I always make sure it looks different from the mucous that comes out of my tush. [ more ]
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J-Pouch ForumsGeneral Discussion
Fasting
Uncle PocketsUncle Pockets
Uncle Pockets I think I have only had caffeine drinks twice in the past five months. I used to drink cola all the time. Does seem like the diet forced on us with a loop ileo only provides benefit. [ more ]
Guest You're on the right track Pockets. I've learned the hard way many times already how important it is to keep hydrated. Keep away from caffeine too. Everything I drink now is caffeine free. [ more ]
Guest You're on the right track Pockets. I've learned the hard way many times already how important it is to keep hydrated. Keep away from caffeine too. Everything I drink now is caffeine free. [ more ]
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J-Pouch ForumsGeneral Discussion
9 month old w ostomy
clz81clz81
skn69 Don't wish it Vanessavy... I was born with this, lived on fluids til 2 and then had my colostomy on my 2nd BD. It leaves scars....no just physically. I have never, ever known life as a healthy, carefree person...I do not know what going to grade school or highschool healthy is like. I only learned what life without pills, pain and suffering (not to mention public humiliation) was like after I recieved the k pouch. Some people are lucky enough to only retain the physical scars but some... [ more ]
vanessavy I wish I was that young having all this done. I have heard of younger having a colectomy. [ more ]
CTBarrister On the other hand, she will be well adjusted to the ostomy/J Pouch (?) psychologically because it will be the only thing she has ever known, assuming she adapts to it well. I wonder though if they will need to make surgical adjustments as she grows. I hope it works well for her. You are right that it will be difficult for the parents who will become de facto ostomy nurses in addition to changing diapers. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J Pouch vs Ileostomy
FM Former Member
chiromancer I went through 18 months of difficulties and called it quits. The surgery from J to an ileostomy varies in how you go about it. No way to know until you get into it. I opted just to be disconnected and have an end ileo, figuring maybe a 1 hour surgery but due to adhesions it took 3 hours. We were going to remove the pouch if it was "easy" but upon looking at it would have been another 3 hours due to adhesions and this was not removing the anus and closing things up (I will not do this). [ more ]
TE Marie Mark makes a good point. If you have the ileo and then go for a j-pouch you usually end up with 3 surgeries rather than 2, which might not be a bad idea anyway. My daughter's friend sent me a DVD she produced about how she's living with a permanent ileo after getting rid of her j-pouch. She was very adamant that the j-pouch was not the way to go because of her bad experiences with it. If you PM me your address I will mail it to you. She shows how she deals with wearing a 2 piece swimming... [ more ]
MarkGregory It is hard to know exactly what to tell you about this, because we each have our own bias as to the j pouch surgery. My pouch has been nothing but trouble from the start, so of course I should say "dont ever get a j pouch" Those whom have had good luck, will recommend it. But dont fall for the line, "I can always try it out to see if it will work, if not, I can always get an illeostomy." It is never that simple. If you get a j pouch that doesnt work good, then you will be putting up with... [ more ]
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J-Pouch ForumsHelp! Need advice now!
plugged AGAIN!
B badguts
TE Marie I hope you aren't sitting in the ER again and have been admitted. Hopefully they can give you pain medication ASAP. Good Luck and make sure you tell them when you need help with the pain. Post when you can, hang in there. [ more ]
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J-Pouch ForumsK-Pouch Korner
Very small ostomy site..
hollyfaith76hollyfaith76
JaniceM The stoma often shrinks down after it heals fully. The surgeon can correct this as it's not part of the valve. A colorectal surgeon should be able to consult and help (they can talk to the KP surgeon). Using a smaller cath is better then nothing as you need to empty. But, yes, poo takes longer to empty and you really have to watch your diet as the cath holes are tiny. Have you tried leaving your 30 french taped in attached to a leg beg? Or taped in and use a cath plug on the opened end? Then... [ more ]
vanessavy This is the guy that makes them for the BCIR patients in our take home kit. Wayne Jacks MWJacks@aol.com [ more ]
hollyfaith76 where do i find the stoma binkies? [ more ]
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J-Pouch ForumsGeneral Discussion
Better / Just as good as Psyllium?
TheresaSTheresaS
TE Marie I used generic Metamucil caplets and didn't take a full dose of 5 at a time. I took 6-9 a day as 2-3 with meals. I quit using them and digestive enzymes. I stopped fiber and imodium before a year out and the digestive enzymes about a year and a half post take down. I do better with looser stools as the more formed they are the more pain I have. [ more ]
Spooky I found Metamucil seemed to give me excess gas, wafer or otherwise, so I had to look for something else. I no longer take any fibre supplement, but for a while I used Benefiber and I had better luck with it, in as far as there were no side effects to report. And since you can add it to virtually any food or beverage (provided you don't get the flavoured kind, of course!), and since it completely dissolves in water, it's really easy to take. I usually dumped mine in a glass of water before... [ more ]
suebear I like chia seed for fiber. You can purchase it at www.getchia.com Sue [ more ]
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J-Pouch ForumsGeneral Discussion
when did you have confidence to leave your house?
fqfq
TE Marie I wasn't going out at your stage and now only go out during the day. It isn't like when I had UC and couldn't hold it. I eat light during the day and hold of going very much that way. I don't go out to lunch or dinner very often as when I eat I need to go and don't want to use a restaurant's bathroom. When we go out it's usually close to home and we leave as soon as we are done eating. I also carry a pair of underwear with my cream and wipes, in a zip lock bag. Old throw back to UC days. I... [ more ]
mgmt10 I had a stricture too after takedown. I had to have it dilated about 5x. It's gone now but it took over a year to resolve itself. So because of that I never took Imodium either. I wish I had some solid advice on how to slow your frequency. Peanut butter worked well for me after takedown and also rice. Bread too. Everyone is so different. Watermelon actually slows me down but for most people it goes right thru them. Go figure. [ more ]
fq Marianne - interesting, because after the first couple months with the ostomy, i felt fine going out. psychologically checked my bag more than it needed to be checked at first, but eventually forgot it was there. I am not taking immodium because i had a stricture recently and it makes me feel a lil bloated. that happened to you? what else can i do? i eat meat and potatoes, but frequency higher than i like it still (12x) Randi M - you're right, nights are the tricky part, where i'm on the loo... [ more ]
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J-Pouch ForumsGeneral Discussion
C-DIFF Infection Frequency.
P POD
TE Marie I had C-diff with my colon and had a worse case of it with my pouch. I had it along with cuffitis and the symptoms are very similar. More frequent and looser BM's pain and sometimes a fever, although I don't get the fever. I also had bleeding and don't know for sure if it's a C-diff symptom or not. It is for cuffitis but not everyone with cuffitis has bleeding. My GI took a stool sample while doing a flexable pouch scope for my clearly visible cuffitis. I had C-diff too. I had not had any... [ more ]
Connie My son has had it once in the 11 years since his take-down, and it was due to taking Augmentin for a month. But his GI always tests to rule out c. diff when ever he has pouchitis. Especially when someone has had it before, it's always a possibility. [ more ]
Lorsall I have had c-diff twice since my take-down, which was a little over two years ago. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Wisconsin pouch dr????
J Jasmine 2
Jasmine 2 I found a doctor at the UW Hospital in Madison that will do scopes of a Kock Pouch. They do other pouches at the UW, but not Kock Pouches. So I told them they may have my scope used as a teaching tool for the hospital as it is a teaching Hospital. The more doctors interested in the Kock Pouch the better..... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
herbal supplements
N NJK
Spooky I've been drinking valerian tea for years, before and after UC. I've never noticed any problems. In fact, valerian is supposed to be one of the natural remedies thought to calm the digestive tract, among its other benefits. [ more ]
skn69 I take both constantly without any incidence. Sharon [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
4 months from take down and still married to bathroom
JpoundsJpounds
vanessavy There are a lot of people actually that do Kpouches and CIRs (like the BCIR) Don't let a local surgeon tell you not to have it. I had everyone left and right tell me not to but they all couldn't give me one reason not to. My issues with the BCIR are nowhere as bad as my friend who had a jpouch about 2 months before my surgery so I guess I have it better. No colon removal surgery is perfect IMO. There is always some set of issues. My pouch is pretty good though here and there. I have been... [ more ]
Jpounds Vanness, I read your blog. Are you still struggling with th BCIR? Some days I get so frustrated. My doc in Boston has nothing more to offer me for the intense rectal pain, spasms, painful gas, and frequency. I had asked my surgeon if she did BCIR, She said no and said as far as she knew, only the Clevland Clinic doc did it. She recommended against it saying it would be difficult if I had complications to have treatment locally. When I read about it online it seemed like a good alternative. [ more ]
MarkGregory I know what you are going thru. Took me a good year to get back to some kind of "normal" . I spent many a night where I slept on top of bedpan. I imagine you have tried, but will ask anyway, have you tried changing diet? I have had to go to a completely sugar free diet. Absolutely no sugar, no high fructose corn syrup, no brown sugar, etc. Cant even have things like canned peas, because they have sugar added. I have to really read labels and check for sugar added, to see if I can eat it. And... [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
Intra Abdominal Ileostomy
C chrfor
vanessavy I have it. Compared to my friend who has a jpouch the same time I had my surgery I have way less issues so I guess it is good to go. It is by far not like a colon but I didn't want the jpouch even when it was iffy I could get one. [ more ]
skn69 Chrfor, I have had a k pouch (the predecessor of the BCIR) for 33ys and am very happy with it...the Bcir is a modified version of the k pouch, the main difference being that they use a 'living collar' to prevent the valve from slipping or twisting (doesn't always help)...k pouchs/Bcir have less incidence of pouchitis and are great alternatives if you cannot have a j pouch or if you have a failed j pouch for whatever reason. If your anal exit is intact and you can retain your rectum and/or... [ more ]
suebear Yes, it's the same thing as a k-pouch only with a proprietary valve. One of the disadvantages is that the BCIR surgery is only performed in 2 US hospitals, one in Florida and one in Los Angeles. I researched this surgery, and almost had it, before opting for a jpouch. Sue [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
ate corn now have had watery diarrhea!
B BrittanyKay
Donna H I think all pouches have a mind of their own and some days they are just cranky no matter what you eat. Like several people said, try a little bit of a new food and reintroduce it at a later time if it causes you issues. I have had my pouch for 15 years and all I can say is that it can be unpredictable at times. You are such a newbie so I would not cross anything off of your list. [ more ]
BrittanyKay Thank you Kathy I totally got what you were saying! Thank you for the encouragement too, as I am very new to this and can totally see myself not enjoying food/life because I am afraid to try! [ more ]
suebear I also agree that there are no universal bad foods. I've had POs from oranges and pineapple, but it was because I didn't chew it. I eat copious amounts of popcorn and have never had any problems. The biggest disservice we do for new pouchers is scaring them from eating a variety of foods. Just because someone might get POs from a particular food, is not a reason for new people not to eat it! There was someone on this board who hadn't eaten vegetable in 8 years because she read that people... [ more ]
See all 16 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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