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J-Pouch ForumsHelp! Need advice now!
Surgery at CC
N njblue
Pouchomarx Dr.Kalady did my surgeries in 2008. He is a great doctor. Has great bedside manner and even calls my cell phone every now and then to ask how im doing and gives advice. I had many complications and still have some issues but not sure if you can blame everything on doctors. They have many competent surgeons there and they all pretty much communicate very well with each other [ more ]
SallyJPouch Good luck njblue. Stay connected. This is a great site. I have learned so much here in the past few weeks, and I have had a j-pouch for l7 years. Sally (California) [ more ]
Oneal Hi njblue, I had my surgery with Dr. Strong at the CC in Ohio. Had my pouch reconstruction done in two steps. First in Nov 2001 with final done in Feb 2002. I can only speak for my case but everything has been great. Still relatively issue free. Godspeed on your surgery. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Persistent anal stricture – surgical options/pouch revision?
CliffmegacolonCliffmegacolon
Cliffmegacolon Hi Jeff Whilst I’m not adverse to self dilation (although I’ve never tried it), I’d rather wait till I’m advised to do so by a healthcare professional and given instructions on the proper procedure. I had a dilation under general anaesthetic a couple of months ago which proved unsuccessful. The surgeon that carried this out said that the scar tissue that causes the stricture is formed from very hard and inflexible tissue, and that if you apply too much pressure when dilating, it can cause... [ more ]
JeffDC Clff, have you thought about self dilating? While not fun to do, a dilator cost me $35 and is a lot cheaper than surgery, plus you can do it as often as needed. Google Hegar dilator and get a recommendation from a doc on what size you should get. [ more ]
Cliffmegacolon Hi Leese I haven’t had the surgery yet I’m still waiting for an appointment to see the surgeon. Unfortunately the cogs of the UK NHS turn at a very slow place so it could take up to 4 months to get an appointment!! I have private health insurance but they won’t cover any J-pouch related issues as they consider it a pre-existing condition!! I hope you are feeling a little better and there has been some improvement since you posted. I’m interested to know did you get a temporary ostomy after... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Green water stool
GW Guy with j pouch
skn69 Galbladder.... No, no problem as far as I know...I had mine taken out in March and other than no longer feeling the horrible pain, all is well . The only warning that I recieved for my post op life was to avoid eating too much fat in my meals (I don't eat fried foods) and the fact that once it is out and you are feeling better you tend to eat more and gain weight because you are no longer in pain. Sharon [ more ]
SallyJPouch That is a bummer. Good luck with surgery. What is gut blade? sally [ more ]
Guy with j pouch Thanks to all who offered suggestions, advices. To update you with the latest situation as follows: Ultrasound indicated that I have pack of stones in my gut bladder. Surgery is expected to take out gut bladder. Any concerns for our pouchers to live with gut blade? J guy [ more ]
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J-Pouch ForumsK-Pouch Korner
"STONES" IN K-POUCH
LE little eagle
little eagle The saga with my stones is still going on after three had been removed through stoma by GI doctor. At the next attempt he could not get the other two. Never got a real answer what the stones were made of but he said something like calcification. I think Vitamins have something to do with that. I now take only capsules. He referred me to Health and Nutrition Person, which I have not gone to because I am in Puerto Vallarta, Mex. and without pain at the time. My GI doctor also referred me to a... [ more ]
skn69 Amazing! I am still shocked at all the things that can happen to a k pouch (or J?)...I remember thinking that once I got my pouch that my life would finally 'start' and that would be it...now I realise that it is just one long journey down the road that most others never take. Sharon [ more ]
marz Yes, kaydbird, that is who I will see. Waiting for Dr. Shen to schedule him after I have another pouch xray (the day before)! I wonder if I will have to spend the night in the hospital. Sharon, I will definitely have the stones analyzed and I will post the results. It may be 3 weeks before I can get in. I am starting to get paranoid about taking the PB 8 capsules. I took them for 8 years, now I think I may open the capsules until I find out about the stones. Dr. Shen said the outside of the... [ more ]
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J-Pouch ForumsGeneral Discussion
Half marathon hydration/nutrition advice?
S Subzeromambo
Subzeromambo Good articles! Thank you. [ more ]
hfc Two fairly good reviews on hyponatremia and marathons. At this years Boston Marathon, I went to a day long sports medicine seminar the day before the race. Part of it was on hyponatremia. I ran fairly well on what was I believe the second or third hottest Boston marathon ever (course was mid 90s). I made sure I drank at least one 6 oz cup of sports drink at each stop. http://www.runnersworld.com/ar...-302--8785-0,00.html http://www.webmd.com/fitness-e...nners-drink-too-much Good luck. [ more ]
Subzeromambo Hfc, We were on the Great Wall Sept. 11th when the news reached us of the catastrophe. It was surreal to be surrounded by such beauty while listening to the horrific broadcasts. I picked up the salt tabs today. Thank you for the information. I have seen a lot of contradictory information on the web about how much sodium is healthy. What site did you like the most? [ more ]
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J-Pouch ForumsHelp! Need advice now!
2 failed pouchograms!
D dodge
Jan Dollar Generally, in these cases the abscess IS the infection. It is caused by the pouch leak and the bacteria from your pouch being trapped on the outside of the pouch. It would seem that when they did the revision, they did not open the hole large enough, otherwise the infection would not persist. I would be very cautious about entertaining the notion of a pouch redo if you had an "iffy" reach in the first place. I would not be at all surprised if that was the reason that it did not heal properly... [ more ]
dodge Maybe I need to ask some more questions. Is the infection caused by an abscess then as they haven't mentioned one. I did have the revision where they made the hole bigger back in August but after my last pouchogram they said the hole is only marginally thinner but just as long. I'm absolutely terrified of more big surgery to correct it and not sure what a redo would consist of. My surgeon said that after they had constructed the pouch initially it was a stretch to make it reach my rectum. [ more ]
Jan Dollar Well, I guess your problem is not that you've failed the pouchograms, but that you have this persistant pouch leak that has not healed. After this much time, I seriously doubt that more time and antibiotics will improve anything. So, you probably should look at this time on antibiotics as time to improve your health while waiting for surgical repair. I had a 1-step procedure, and developed a pouch leak, but I guess I was lucky that it was minor, because by the time the presacral abscess had... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Do you have UC and Crohns?
SallyJPouchSallyJPouch
SallyJPouch Good information from you, Spooky and CTBarrister. I am gathering information and making a list of pertinent questions. Thank you so much. Sally [ more ]
CTBarrister I think Spooky is correct. There are probably a number of different species of IBD that cannot neatly be classified as either Crohn's or UC and are more properly labelled indeterminate. There are some people who don't understand that Doctors struggle to pigeonhole a particular manifestation into one category or another and probably the better Doctors put indeterminate in front because what they are seeing is not neatly tucked into one category or the other. My case is an example. IBD is more... [ more ]
Spooky It is my understanding as well that you can really only have one or the other. If you are diagnosed with Crohns, then all your symptoms are addressed under that blanket term, and you are no longer considered to have UC. It is true that a percentage of patients initially diagnosed with UC eventually have their diagnosis changed to Crohns, sometimes even many years later, but usually only when other symptoms begin to manifest, as in your case. What is still debatable and remains a source of... [ more ]
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J-Pouch ForumsGeneral Discussion
Flexible sigmoidoscopy / pouchoscopy
nikikinikiki
SallyJPouch Thanks for the input. That helps to know it was in the norm. Sally [ more ]
notsotough I have had a few scopes - not painful unless the pouch is inflammed but not unbearable and rather quick- the pouch is not that big after all. [ more ]
Jan Dollar My GI always goes a bit beyond the pouch itself, just to make sure there is no pre-pouch inflammation, polyps, etc. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
osteonecrosis of the knee
L lab
JeffDC Lab sorry that happened to your knee. Luckily, I was not on prednisone to have bone problems, but my brother was not so lucky (U C also). He had one hip replaced last year. We went hiking in North Georgia on Saturday, and he had to stop early, as his other hip was hurting. He limped the rest of the afternoon. If it comes down to pain or a replacement, don't wait too long. [ more ]
Leftie I also had these complications with prednisone. For me it was both hips. One was rescued by a surgery and the other one had to be replaced. I am sorry this has happened to you and hope that all goes well. [ more ]
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J-Pouch ForumsGeneral Discussion
Budesonide
J Jbf
Guest entocort designed to open in the begining of the colon. does is work in the small intestines? [ more ]
jeane This is a steriod, not an antibiotic. what are you being prescribed it for? http://en.wikipedia.org/wiki/Budesonide [ more ]
CTBarrister It's Entocort. I am taking it. NOT an antibiotic. It is a designer corticosteroid. Has anti-inflammatory properties. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Painful & throbbing outside of anus
G grandmaof1
Jan Dollar I agree, this if it is an abscess, it is not something to live with. But, it sounds like you are keeping your doctor up to date, so you can wait to see if this gets better or worse. If you go looking too soon, there may be nothing to see and it may give you a false sense of security. If this does turn out to be an abscess, new symptoms will emerge, but not necessarily all of the. Typically there will be a fever, low grade at first and later rising; increasing pain and tenderness in the area;... [ more ]
liz11 if this is possibly an abscess, ths is not somwething you want "live with". Please take yourself to the doctor and get checked out before things potentially get worse. best wishes [ more ]
grandmaof1 Thank you so much Jan Dollar. I never thought about an abscess. That is why I love this site so much. I will continue with Tylenol and lots of praying. If this is what I have to live with and all else is well then I can do that Thank so much. [ more ]
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J-Pouch ForumsGeneral Discussion
Hear hoof beats? Could be a Zebra!
K kereen
vanessavy I just did this in my duodenum. Was cake walk. Mine was done with a upper scope. [ more ]
Jan Dollar Wow, what are the odds? Glad they finally found the cause of the bleeding. Jan [ more ]
kereen Doc did say it could be a number of different things including a fatty tumor best case scenario. He said if he had to guess he thinks it's a carcinoma or a GIST tumor (both are small bowel cancers). I'm hoping for a GIST because 80% of GIST tumors are benign. Hospital called today and I'm scheduled for a CT tomorrow with enteroscopy on Monday. I'll hopefully know what it is soon. [ more ]
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J-Pouch ForumsHelp! Need advice now!
j pouch surgery
FM Former Member
Spooky The stoma has a lot of blood vessels and can bleed easily if irritated. You may want to check around the stoma; if your wafer/barrier ring is too small it could be cutting into the stoma and causing bleeding. A stitch pulling out is another possiblity. However, I want to stress that having your ostomy bag fill with blood is definitely not normal. One thing to consider; are you eating any red coloured foods? Pretty much any of the following can cause a reddening of the stool: beets, anything... [ more ]
Solomin Is it possible that the blood is just at the exit point? Did they do a stool analysis? This would be an important step. Are you watching your diet? I was told to avoid nuts, popcorn, and fried food at all costs as it could cause a blockage. Perhaps a few days of liquid only diet might help. It could also be a partial blockage. As for pain, in my case, the only pain I had was from lack of being able to empty my bladder. All the pain medication affected my ability to pee. It was the worst pain... [ more ]
darealfoo Pain is, to an extent, normal after this huge procedure. What seems odd is the blood collecting in your bag. Are you eating a lot of reddish food (like beets)? I'd let your surgeon know as soon as you can to be safe, even though the x-rays and such came out negative. [ more ]
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J-Pouch ForumsHelp! Need advice now!
koch pouch / BCIR
S Solomin
Guy with j pouch Solomon, I Did some research on BCIR. There are 2 or 3 surgeons in the states performing BCIR. One is in FL (bcir.com) one is in LA/CA (http://ileostomy-surgery.com/index.html), the third one is in TX. I do not have the site. It seams there Is some IP involved, if you look at their sites, BCIR looks like a logo or trademark. It might because that, it is not wildly available elsewhere. In the forum, the feed backs are generally good. It is given the pouchitis is a shared issue with all kind... [ more ]
Solomin Sharon, Dr. Cohen Cohen has always been nice and professional. It is Dr. McCleod whose office was rude. By the way, I never rude rude or acted in an unacceptable way towards Dr. McCleod's office. I was always courteous, friendly and professional. Solomin [ more ]
skn69 Solomin, You are not the first person that I have heard that from...resend your file to Dr C directly with a note to his secretary that you already had direct contact with him and would like to be considered for a k pouch...you will be accepted if your medical condition allows for it...I will re-contact him for you after that. Sharon [ more ]
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J-Pouch ForumsHelp! Need advice now!
Crazy sweaty!
KelseyHey2308KelseyHey2308
TE Marie That's another problem with having pouches. When we get sick from other problems it seems as they all affect our pouches. I hope you are feeling better soon! [ more ]
skn69 Kelsey, Could you be getting the flu? Apparently it is starting to go around...if so, hydrate smart by increasing your salt/glucose when drinking (homemade lemonaide with a pinch of salt and honey instead of sugar is great or honey/lemon tea, chicken soup...)...the other possibilities are that your hormones are going nuts...coming off of long-term cortisone use can do it and so can our surgeries...then there are the 'normal' gyn things like ovarian cysts that can send your hormone levels off... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Series of concerning symptoms over the last 11 days
S Slightxa
TE Marie It sounds like my symptoms before I received a cuffitis diagnosis. It didn't continually fill the bowel. I'd have a major bowel filling with actual dripping out after a BM, then some times when I wiped and then no blood. Pouch scope confirmed cuffitis. I have more frequency and watery BM's are less painful that firmer ones. This is why I rarely take Imodium. I think I had it for months before getting anything done as thought it was part of the "first year" of recovery. It is such a little... [ more ]
Jan Dollar Could be pouchitis, or just a bout of food poisoning or a rotovirus. Since it seems to be resolving on its own, there's no harm in seeing if this trend continues. Of course, should you relapse, you should call your doctor. Pouchitis can start like this, sputtering and going between remission and relapse before you realize it is there to stay. My first bout of full blown pouchitis was after a case of food poisoning. One troubling thing though, is that you mention bleeding more than you are... [ more ]
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J-Pouch ForumsGeneral Discussion
Surgery may be approaching.
FM Former Member
Former Member I know this question may not apply here but has anyone had just a section of their colon removed? I'm just curious about recovery time, diet, pain etc. Thanks Gordon [ more ]
Jan Dollar Sounds like a good plan. Rectal sparing is indeed rare in UC, unless you have been using rectal medications. But, since you have had rectal inflammation in the past, you don't truly have rectal sparing. Still, if possible, it would be good to know Crohn's vs UC. They used to do partial colectomies for UC in the past, and even ileorectal anastomosis in some, but it rarely turns out well, and you wind up coming back for more surgery later. Jan [ more ]
Former Member I met with the surgeon today at the Cleveland Clinic. I felt like a lab rat as I was in a small exam room and he came in with 4 other surgeons all sporting clip boards. He was extremely thorough with his questioning. He has asked me to get ALL recent pathology results, stool test results and would also like the actual glass pathology slides so his team can look at them. He's not convinced yet that I just have UC based on a few observations. He still feels it's possible for me to have chron's... [ more ]
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J-Pouch ForumsHelp! Need advice now!
GUM?
FM Former Member
Former Member ❤️
little greeny If the pain gets worse, or is accompanied by nausea, vomiting or sharp pains you should seek medical attention. I agree also that if the pain is unbearable you should seek help. I had the same situation happen to me (swallowed gum and got a stomach ache). What I did (and what I do whenever I have a suspected partial blockage) is to start drinking a lot more water. Of course a caveat to that would be that drinking water can potentially also make you sick so make sure not to exceed what your... [ more ]
CTBarrister Can a piece of gum actually become stuck inside someone's gut such it would cause a blockage? How big a piece was it? I thought that this was going to be a thread about chewing gum because I had read some admonitions against it, although I am not sure why. Arncap, I doubt you could have swallowed a big enough piece of gum to have caused a partial blockage on its own, but depending on what else you ate, perhaps it did not help matters. If the issue persists, you may need to go to the doc or... [ more ]
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J-Pouch ForumsK-Pouch Korner
Why Are Nsaids Bad?
D dpol
Adroen Hey Sharon, I do feel a bit fuzzy too, and would rather not have to take anything, but they are helping me slow the bowel down so I have to use them at the moment. I can understand from what you say why you'd be sick of having to use them though. I got lucky in high school, as I hadn't got to the sick stage yet... take me back there anytime time machine. lol [ more ]
Donna H When I used to have UC and a period, I would get severe mentrual cramps and take lots of Ibuprofen for the pain. Well, I always thought that my colitis got so much worse during my period but it actually was the NSAID's that was the culprit. I do take an occasional one when I have back or joint pain and it seems that one or two will do no harm to a pouch. Just be sure you don't overdue it. [ more ]
Jasmine 2 NSAIDs, Vioxx, and Celebrex are upsetting to the GI tract. I can't take these on a regular basis, very rarely yes, but they irritate my GI tract. It took years for the GI doctors to figure this out, I used to take ibuprofen daily before I figured out it was irritating my GI tract. I do take one aspirin a day, as I am 60 years old which I've had no trouble with. [ more ]
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J-Pouch ForumsGeneral Discussion
Bleed when run and have a 3cm pouch ulcer
FM Former Member
kereen I frequently have pouch ulcers and my doc treats them with hydrocortisone suppositories. Several folks have posted here that they bleed after running, not sure why but you might want to do a search on it. Good luck! [ more ]
Subzeromambo Jimmy, I did a search here under j pouch ulcers and found some informative old posts. People talked about symptoms and treatment. You might want to do your own search. Ulcers do not seem to be rare and most posters said they were treated with a course of Cipro. I had not heard of j-pouch ulcers before but I am glad to hear they are treatable. Could the bleeding be due to the ulcer? How much blood is it? [ more ]
Guest Much might have changed but at the same time too, so much hasn't. For example J Pouch surgery is still in existence. [ more ]
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J-Pouch ForumsGeneral Discussion
Creatine
N new2thisstuff
Blake D. Yeah, I'm pretty sure the loading phase is BS and just causes you to take more so you buy more. I'd just go with one dose a day. [ more ]
Luton Matt I take it every day. Causes me no issues. Make sure you drink plenty of fluids and you'll be fine. Don't bother with the loading phase though, just have 5 grams a day, you'll still get up to the same results without loading. In uk I use myprotein website, they supply some good supplements. [ more ]
bootstrap I used to use it before my surgery. I still have some left and was pondering whether or not to go back on it. I suppose I might as well at least use up the supply I have left. I think I will wait until well after my reversal, though, when I am really able to throw myself into working out again. For some reason I'm just nervous taking many supplements and pills with an ileostomy. [ more ]
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J-Pouch ForumsGeneral Discussion
exercise, urges, and pooping
fqfq
NewPouchMike I think all of us who are active with exercise have experienced the same. And as was noted, it very much gets better with time !! hang in there...... I tried many different combinations regarding exercise.... I exercised mornings, afternoons, evenings... tried eating before, not eating before etc.... what works best for me is use your anti-diarrheal of choice and then do your exercise. If you end up having to go to the bathroom then my feeling is make sure you get your money's worth !! try... [ more ]
kathy smith Bathrooms on runner's routes don't have toilet paper? Why is that? That doesn't seem very fair to runners. kathy [ more ]
Subzeromambo I have bathrooms marked on my routes, just in case... I carry sample packs of balneol, calmoseptine and flushable charmin. Many bathrooms on runners routes do not have toilet paper! It has become less of an issue over time. [ more ]
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J-Pouch ForumsGeneral Discussion
Screen Name Change
TE MarieTE Marie
TE Marie You changed it [ more ]
CTBarrister I was also thinking of changing my screen name to something a little more remote and generic.....like "jurisprudence" or "CTBarrister"........... [ more ]
TE Marie Thanks Sharon, I'm still feisty. Thanks changingtime, I left the TE there as that's what a lot of folks on here call me anyway. Thanks Chuckus \ BTW my husband is dreaming we're going to buy another home in Florida. I said, how far is Jacksonville. He said why, and I said Mayo is there. How is the weather in Jacksonville in January? This is a related to J-pouch as I'm not moving anywhere there isn't a GI IBD specialist. [ more ]
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J-Pouch ForumsGeneral Discussion
pain meds?
G Guest
Jan Dollar Since Dilaudid is one of those uber-good narcotics, you just have to be more "on top of it" than you would with just Vicodin. That just means that once or twice a day, you should be fine. But, if you are finding that you are taking it to avoid the feeling of not being on it (withdrawal), then you are heading into slippery slope territory. Some people say you cannot get addicted if you only take opiates for pain- very, very wrong.... That said, I have been taking daily small doses of Vicodin... [ more ]
mgmt10 I was on Vicodin for 3 months. If you hurt, take the pain meds. [ more ]
Subzeromambo You have to stick with what works for you. Dilaudid gave me hallucinations but other people find it works really well for them. Morphine works the best for me. Now I use oxycodone and valium when I have painful j-pouch spasms-perhaps twice a month. It really is important to take the pain killer when you need it. I was told that you heal faster when you are not in pain. Oxycodone slows down my bowels but I do not use any thickeners so it is not a problem. So far bananas are the only thing... [ more ]
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J-Pouch ForumsGeneral Discussion
veteran j-pouchers please keep reminding us...
G Guest
Rocket Tom, You're welcome. Other posters here have said that it helps if you lie down and put a heating pad on your belly. It does bring comfort. Funny/Silly???????????? Have to agree with that about myself and my kids have told me that numerous times. I laugh at myself sometimes. Laughter is very good medicine and it doesn't cost a cent. Hang in there and try to stay as positive as you can. I see you are in NY. Are you ready for the storm that they are calling Frankenstorm? Rocket [ more ]
Guest rocket, thanks so much for the list and thanks to you all for the encouraging words. do you guys ever find yourself being funny silly happy excited like you were before colitis/j-pouch? i cant see me there at all but i hang on to your experiences. last night was the worst. again a good day then cement butt at night with unreal bloating to top it off. gonna cut back on the imodium. wish dilauded had an anti spasm effect because its slowing warming calming effect is dreamy. id live on it for a... [ more ]
Guest rocket, thanks so much for the list and thanks to you all for the encouraging words. do you guys ever find yourself being funny silly happy excited like you were before colitis/j-pouch? i cant see me there at all but i hang on to your experiences. last night was the worst. again a good day then cement butt at night with unreal bloating to top it off. gonna cut back on the imodium. wish dilauded had an anti spasm effect because its slowing warming calming effect is dreamy. id live on it for a... [ more ]
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J-Pouch ForumsGeneral Discussion
going to try stopping imodium again
G Guest
Jan Dollar I've never known a "slowing" food, just thickening. For me none the fiber supplements and no foods with soluble fiber slowed me at all. They actually increased my output by increasing the bulk. But, what they do is make stools easier to pass (yes you can strain even with diarrea because of the irritation it causes) and more comfortable by soaking up those bile acids that cause butt burn. Jan [ more ]
Guest do slowing foods cause you the same problems or just the imodium? [ more ]
Guest do slowing foods cause you the same problems or just the imodium? [ more ]
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J-Pouch ForumsGeneral Discussion
Foods or Fibers to add bulk
J JessGoguen
Spooky Some people don't tolerate psyllium fiber supplements such as Metamucil, etc. I found Metamucil gave me too much gas so after a trial of a few weeks, I felt I was better off without it and I didn't bother continuing with it. However, a supplement like Benefiber (the unflavoured variety, of course) can be added directly to food as it dissolves completely and is tasteless. I have used Benefiber in the past without the negative side effects Metamucil gave me. That said, I no longer take any... [ more ]
CTBarrister I have taken the metamucil wafers. They come in cinnamon and apple flavors and regular and multigrain. The operative fiber is psyllium husk. The Walmart house brand fiber supplement, Equate, is what I am using now and it also uses psyllium husk as the active fiber ingredient. It is significantly cheaper than metamucil. [ more ]
JessGoguen Did you take the metamucil in water, a pill? I have only been told about the wafer. Thanks! [ more ]
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J-Pouch ForumsOstomy & Skin
New Skin Irritation and Belt
gmarie1208gmarie1208
Selma I use coloplast and I do like the paste also. I use a convex wafer and the paste. I get skin irritation around the edge of the wafer NOT around my stoma. Will the stoma powder etc. help with that? [ more ]
gmarie1208 Which Hollister 2 piece? Convex or not? A week, wow! I am soooo jealous! gmarie [ more ]
hart155 I use Hollister two piece cut to fit. I use paste...I know everyone seems to rag on paste but I love how it gives me a good seal. I can get a week on one flange. If I get any skin irritation I use stoma powder and barrier spray. [ more ]
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J-Pouch ForumsGeneral Discussion
Eating disorders
skn69skn69
skn69 Grandma, It is not normal to no longer be able to eat after the j pouch creation...it should be the opposite...you should be able to eat better than when you were sick... I would try a new direction...seperate the foods that you eat by only eating 1 type at a time (for instance just chicken for 1 meal, or just tomato soup) I found relief when I started to do that seriously for a while...I learned what I could eat and with what other foods...some mixes are just toxic for my body and pouch so... [ more ]
Rocket grandmaof1, I am so sorry you are having such difficutly with your pouch. I would contact your doctor. Perhaps you have Pouchitis who other related issues. Your message is somewht vague. You say you watch everything you eat and hardly eat all, but what are you eating? I would keep a journal of what you eat and jot down what your reaction is to the food you eat. With J-Pouchers, what one food aggravates our disgestive system, another person can eat it. I always though that unfair but that is... [ more ]
grandmaof1 I still watch everything I eat. I hardly eat at all. If I do eat out comes the diarrhea almost before I even finish the meal. I eat very little and chew a lot. I don't understand how you all can eat. I just wish I could eat something and have it stay in. I am on all those medicines that help with it all. I am sick of taking medication. I feel like I have UC all over again. I must say I love my new weight and size but I hate not being able to eat. It is a bummer. Truthfully it sucks....... [ more ]
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J-Pouch ForumsGeneral Discussion
let me cut to the chase
G Guest
KiwiPoucher Hang in there Tom! I am having a bad day today too, after 4 brilliant days it is a real comedown, but tomorrow is another day! Caroline [ more ]
Guest i see a new surgeon on nov 6th so well discuss this. i had my surgery at cleveland clinic but moved home to ny to be back with family and my surgeon hand picked this new guy so well see. i had these exact symptoms just before takedown just passing mucus and the cuff and pouch were all checked n clear right after so i dont think thats it. i think its adaptation but its alot to deal with. i dont seem to be alone in being overwhelmed 28 days from takedown so i need to stay calm and trust im... [ more ]
Guest i see a new surgeon on nov 6th so well discuss this. i had my surgery at cleveland clinic but moved home to ny to be back with family and my surgeon hand picked this new guy so well see. i had these exact symptoms just before takedown just passing mucus and the cuff and pouch were all checked n clear right after so i dont think thats it. i think its adaptation but its alot to deal with. i dont seem to be alone in being overwhelmed 28 days from takedown so i need to stay calm and trust im... [ more ]
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J-Pouch ForumsGeneral Discussion
Maximum age for j pouch surgery
D DaveInNorCal
DaveInNorCal Thanks for your comments. [ more ]
KiwiPoucher Having had both too, to me a total open hysterectomy was a total breeze..... on my scale a mere 5% compared to the colonectomy/j-pouch! [ more ]
CeeeeCeeee I was 61 when I had step 1 and 62 when I had the takedown. No age related problems as a result of the surgeries. Am now 72 and just had a full on, open hysterectomy last December. Easy recovery for me. I'm far from being in great shape but not overweight. Maybe that helped. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
When to see a medical person??
G Grandonion
Jan Dollar One more point: if you cannot find a GI who has pouch experience (not a crime or a deal killer in my mind- and not everyone has a lot of choices available) make sure that he is at least willing to learn and open to suggestions you may make from what you learn here and elsewhere. My doc is willing to discuss things I read about in journal articles, etc, and willing to try different approaches. I definitely would not stay with someone I did not like or treated me indifferently. If you are a... [ more ]
Spooky Opinions on this will vary. Some surgeons want to continue to treat you and see you regularly after surgery. Other surgeons will discharge you to the care of a GI once the slicing and dicing is done. Although my surgeon is fantastic and tried to be as accessible as possible when I had questions or issues, the fact of the matter is that he's an extremely busy chief of staff dealing with dozens of surgery patients weekly, and he wasn't always immediately available. We got to a point at about 3... [ more ]
NJK Like Jan said both will do but make sure your GI has experince with Jpouches. My GI and CRS have each other on speed dial so if one can't take care of me the other can. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Fistulas, jpouch, Crohns.... oh my!
A akteacher
jeane aka, I have been doing this for over a week and this is the first time I have been off antibiotics for more than two days with no issues so far..and I considered myself a good eater before.....praying...hope this helps you!!! It may be just because I still have a lot of the drugs in my system that is helping me get by but whatever it is I'll take it. [ more ]
akteacher Thank you! This is exactly what kinds of information I'm looking for! [ more ]
jeane You should do some research on anti-anflammatory diets. The often include the following: green tea fish oil olive oil 100% unrefined salmon,trout tuna, herring, sardines(uugh I know) no carbs, wheat, flour, sugar tumeric, ginger, cinammon green leafy vegetables (if tolerated) and plant based foods See the following link below. Dr. Weil has a lot of valuable information on anti inflammatory diets. I have been following this for over a week and already feel better. I actually stopped my... [ more ]
See all 3 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Diarrhoea at 10 weeks pregnant
S Sarahbp55
rockandroller Yeah, goat curry is not something I'd be eating while pregnant or I'd expect to wake up in a mess in the bed too. Hang in there lady. Even non-pouchers have a host of GI problems while pregnant. [ more ]
Sarahbp55 Thanks for your replies ladies. I went to the hospital and had a blood test (3hr wait!). That night the diarrhoea stopped and now I'm blooming constipated! Not complaining though! I am actually on a long term maintenance dose of augmentin (co-amoxiclav) for my fistulas anyway so I think this was a case of a dodgy goat curry I ate on the Friday which gave me the runny tummy for 36 hrs. Plain old food for me from now on.... X [ more ]
Clicky I struggled with bouts of severe diarrhea esp in the first trimester (I have antibiotic dependant pouchitis). Do go to the specialist, and consider antibiotics if its pouchitis. If it gets bad go and get rehydrated at the ER. I had to start a much faster antibiotic rotation to deal with it and its working better now. For a while it was yellow watery stool 20x day with 5-6 at night. For me, night time incontinence means the pouchitis is getting out of control. There are plenty of good... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
good all day rougher nights
G Guest
Guest im happy with the number of bms. just wish they were all easy like my morning one. i think i may have just stumbled on something. my morning bm is always easy cause my butt is well rest and relaxed but as the night goes on and the pressure builds my butt is stressed and flexed from holding in the pressure. im sure you guys figured that out but it just hit me. the trick is to teach my butt to relax even under built up pressure... [ more ]
gleam Wow, very impressive Tom. I wish I was going as little as you are. I do not count them but if I had to guess I have gone 9-12 times in the last 24 hours. Actually that doesn't sound too bad... Hmm, funny how things look typed out. [ more ]
Rocket Thanks Tom Rocket [ more ]
See all 13 replies...
J-Pouch ForumsPouchitis
MRI Enterography Study of Small Bowel
CTBarristerCTBarrister
jeane Interesting. xifaxin increased my diarrhea and urgency..not a good one for me Good analogies!!! [ more ]
CTBarrister They seem to work well in tandem or as a duo, like Abbott and Costello, Martin and Lewis, Simon and Garfunkel, and Hall and Oates (not to mention Laurel and Hardy and Penn and Teller ) . The efforts of the duo seem to outstrip the solo efforts of each partner. I am not sure why. Cipro/Flagyl in tandem are my most powerful antibiotic combo, followed by xifaxin and then augmentin. All of them work, but augmentin is probably slightly less effective than xifaxin. [ more ]
jeane DJB, Report back on the augmentin rotation. I went almost 19 months on it with pretty good success with no side effects. Maybe you can take that one for a longer period of time as the side effects seem less even though it is a big gun antibiotic. After my issue with Cipro last night our GI said to stop it and restart it the next day (today) and get some benadryl in case I have a reaction. I have gone almost 14 hours with no antibiotic and although I had a little nausea earlier, I seem to be... [ more ]
See all 25 replies...
J-Pouch ForumsGeneral Discussion
Hey Jan Dollar
G Guest
Jan Dollar I am leaving this post here for one purpose; to urge everyone to please add this fellow to your ignore list by clicking on his profile name and choosing it from the drop-down menu. Obviously, "Honesty" has chosen not to play by our rules and is relishing in typical troll behavior of doing all he can to disrupt the site. This has nothing to do with truth, honesty, or anything similar. Just plain childish high-jinx for someone with nothing better to do. Thanks for your cooperation. Also,... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Pouch pexy?
K Kelsie
TE Marie Very Interesting. So scar tissue, in certain areas, is good for our j-pouches. [ more ]
Daisy18 Yes, I had this surgery done a couple years ago, not because of a prolapse necessarily but because my pouch kept twisting since I did not grow enough scar tissue to keep it in place. My surgeon attached my pouch to my sacrum using dissolvable mesh in the hopes that once the mesh dissolved, scar tissue would take it's place. So far so good and for me the recovery was similar to the takedown surgery. [ more ]
Kelsie Yeah I saw that but Rigby didn't post afterward to say how it went. I was hoping for details. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Very interesting article.
SpookySpooky
kathy smith Wonderful article! And she's a very fine writer to boot. Thank you for posting this Spooky. kathy [ more ]
SallyJPouch Great attitude! [ more ]
Jan Dollar Well put, and I couldn't agree more. Why should it matter what it is called, since you will have "it" regardless. I guess in the sense of finding appropriate treatment, a diagnosis should be sought. But, like the author, as long as you are finding your rhythm, new normal, whatever, it is OK to accept, adapt, and move on. Bravo! Jan [ more ]
See all 4 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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