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J-Pouch ForumsGeneral Discussion
J-Pouch
BKSBKS
Jaypea Hmmm..learn something new every day. Thanks! [ more ]
Lesandiego My surgeon said the same thing.... he does not do J-pouches on "tall" people. [ more ]
Jan Dollar Actually, a long trunk and a narrow pelvis (common in men) can make for a very difficult j-pouch procedure because of the physical "reach" of the blood and nerve supply for the small intestines. It can even lead to an inability to do the procedure. That said, years after surgery, he should have been able to adapt and function, as long as there was not chronic ischemia (reduced blood supply) to the anastomosis because of the "iffy" surgical presentation. Chronic ischemia can lead to... [ more ]
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J-Pouch ForumsGeneral Discussion
Doctor referral/Mass/CT
JB J Baru
jeane Dr. Ioannis (Yanni) Oikonomou ( e con o mo) at 40 temple st at Yale New Haven. Best GI doc around for jpouches. Trained at Cleveland under Dr Shen and has been managing me and my issues ( stricture, pouchitis, cuffitis) for well over a year. Really nice guy also and highly qualified. I know of one other member on board who goes to him also. Good luck. [ more ]
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J-Pouch ForumsGeneral Discussion
Imdoium
LaviSinghLaviSingh
Jan Dollar Yes. I have been taking it since my surgery in 1995, but need much less now. Still, my output is variable based on what I eat, so I don't pay too much attention to how thick or watery it is. I mostly care about frequency. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
update on my December
clz81clz81
JeffDC That was a tough month. I hope they get better this year, [ more ]
skn69 Let's pray that 2014 brings you a hospital-free year with only good news to rapport... Sharon [ more ]
phonix2g Good luck and try and keep a positive outlook. We all understand how times get tough but the human will to survive and persevere is an amazing thing. I believe there are good days coming your way. Happy New Year. 2014 will be the year you take back control of your life. [ more ]
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J-Pouch ForumsGeneral Discussion
Malabsorption, Iron Deficiency, Weight Loss
wazzou2wazzou2
winter wish I had j-pouch aspirate and hydrogen breath test done to confirm sibo and therefore on continuous antibiotcs. But it wasn't until I was started on Creon for pancreatic insufficiency that i got real results. Quality of life definitely improved. Maybe worth asking for a trial of Creon, doctors over here don't recommend imaging for it but just to trial the creon as see does things improve. Definitely right!! sibo can cause serious malabsorption problems. [ more ]
liz11 wazzou sounds like sibo for sure. If you haven't already done so - try hunting down a GI doc that specializes in nutrition issues. Seems lots of docs are pretty clueless about sibo. and don't give it attention it deserves until they see the weight loss and bad bloodwork. I have bad sibo. Right now I am rotating three different antibiotics every 2 weeks and on a strict fodmap diet. As winterwish posted.. there is significant scientific evidence about the fodmap diet. But even with all of this... [ more ]
Scott F ARP83, I'm intrigued that you consider yourself med free while self-injecting these substances. I'm glad they're working for you, but "med free" doesn't seem accurate. [ more ]
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J-Pouch ForumsGeneral Discussion
Chronic Pouchitis
G Grandonion
Scott F CJB, I haven't done a lot of tinkering with the VSL #3 DS dose. I was on a lower dose for years - 2 packets/day - and that worked fine until it didn't. I'm honestly not sure if the 4 packets/day is critical, it's just the highest recommended dose on the product literature. [ more ]
AllyKat Ive been on 2 packets a day for the last 4 years. That along with canassa keep me in remission for 4 years. Currently taking a VSL 3 D breather and trying homemade kifer. [ more ]
AllyKat I've had Pouchitis from day 1. 14 years and still have my pouch but seriously wonder at times about my sanity. I have been on just about every med if you check my signature. Currenty back on UC meds. canassa and pentasa after a short dose of xifaxan and endocort. Also trying my hand at Honemade kefir which has about 60 billion probiotics in it and about 30 different strains. Lots of anti inflammatory vitamins. It's a roller coaster for sure and I'm always thinking this is the end. I'm trying... [ more ]
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J-Pouch ForumsOstomy & Skin
Signs of appliance allergies?
DaDDie2DaDDie2
DaDDie2 Thanks all. I eventually had to hit the ER and my favorite WOC Nurse was right on the job. She claims it's a minor fungus issue. Gave me some powder Nyaststin(I think) things seem a little better. Still waiting on my precut order to start. [ more ]
tulsamom I became so allergic to all the adhesive products that I'd spend a lot of time in the shower with a bottle of Maalox. It did provide relief when I spread it over the inflamed itchy red area - a big square. I had to change my appliance at least once a day, it was so painful and itchy. I tried everything and even went to the dermatologist and in the end there was nothing I could do but pray for my take-down to come fast. I wish you all the luck in the world!! [ more ]
PoucherInTO It sounds like stool is getting under your wafer and irritating the area around your stoma - this was happening to me until I found the system that works best. I make sure my skin is clean and very dry, then I apply stoma powder where there is the redness. Dab off any excess powder to make sure your adhesive sticks correctly. Then apply a barrier (there are sting free pastes or a cohesive seal - like the Eakin or Adapt. Coloplast also has a Brava line with seals). Call manufacturers for as... [ more ]
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J-Pouch ForumsGeneral Discussion
mucos output from rectum; post-Step1 surgery
TheRealBrettTravisTheRealBrettTravis
DaDDie2 Completely norm. I used this opportunity to strengthen my new pipes by tryin to hold it as a form of exercise. It seemed to work as the urges became less and less frequent. Plus what you eat can effect the out-put. [ more ]
CTBikeBoy I'm dealing with the same thing after step 1 of 3. It's completely normal...and annoying!!! [ more ]
Pluot It's a sign of healthy tissue, nothing to worry about. It's also not unusual to see small amounts of blood in the j-pouch discharge, even longer after surgery, so don't worry. [ more ]
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J-Pouch ForumsGeneral Discussion
Anxiety/Depression help needed - Don't know what to do.
MJ Manuel J.
DaDDie2 Manuel, no worries good buddy. Talk with your doc ASAP and he'll be sure to set you on the straight an narrow. I'm 31, single and with a very strained family. Basically alone and between the chemo and all the ops this whole thing can go Ef itself. But the truth is someone(s) somewhere needs us. If it gets to be too much for you, then do it for your loved ones. I've been to some dark places but thanks to my beautiful kids I manage. The "downs" are at a new low and highs are few and far... [ more ]
phonix2g Hey Manuel you have absolutely nothing to be ashamed of there are so many people out there being treated for anxiety and depression just from life itself and you have even more of a reason because of the major trauma your body endured. It is not only tough physically but the psychological toll it takes is nothing to ignore. I am 31 and never had anxiety or depression but after my surgery I was plagued with it and yes it is an illness that needs to be take seriously. I decided the combination... [ more ]
skn69 Manuel, I would say that yes, you need to talk with someone who can help you to see how relative everything is, how you may be different than you classmates now, but as time goes by, you will realise that we all have our problems, some bigger than others, but not so big that they are worth destroying an opportunity to live a beautiful adventure with a lovely girl. You are right, it is your anxiety and lack of self esteem that are hurting you and your ability to enjoy the moment. Yes, a good... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Intro and Peritoneal Inclusion Cysts
L Liberty15
sweetpeasmom My daughter, age 22, was diagnosed with peritoneal inclusion cysts last year. She had a colectomy with jpouch formation and diverting loop ileostomy 12/2011. She has not yet had her takedown due to complications (initially an abscess that took almost a year to clear up) and then PIC. She has had multiple drains inserted, as the PIC caused severe pain while walking, with intercourse, and pain after peeing. Birth control was never suggested, but I read something about it, so the docs agreed to... [ more ]
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J-Pouch ForumsGeneral Discussion
Maybe pouchitis may be Crohn's diseas
G GraceL
GraceL Roberta hope you get some answers. It's taken me months to get this scope my surgeon thought I was simply complaining about going to the toilet 7-8times a day wasn't until I lost it and said I'm delighted with that and fact I've control over things that he listened. Liquid diet is the best for me too homemade vegetable soup blitzed and then sieved so no lumps. You had take down a few weeks before me. Yep I feel diseased all the time too. It hurts to eat now too and no energy I'm hoping... [ more ]
RLC GraceL - I too have all your symptoms! I have been to my GI and scoped and biopsied! I had my j pouch takedown in 4/30/2012. I have been on chewable probiotics, eliminated all dairy, watch diet, etc. On dexilant for GERD since 2007. My GI in Providence, RI just prescribed sucralfate which seems to help with my inflammation and pain in stomach. I am off to Boston, MA for a 2nd opinion in February. They are not sure if the rectum(cm left) is what is causing all my problems. Always feel like I... [ more ]
GraceL Thanks Ally Ive been on an ongoing course of VSL#3 they help with the pain but not much else but he did mention something about the bacteria. Hoping for results in next 8 weeks. Thanks though glad to know I'm not the only one. It helps a lot forgot how lonely feeling unwell can make you feel at times [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch Failure, Question About Permanent Ileostomy
RJ Russell J
Rainstone33 I just had my j pouch removed and a perm ant ileostomy put in. On nov. 13,2013...it was the best decision I have made..I am 32 now and was able to have two children before my crohns got out of control. [ more ]
Tana Dr.Bo Shen at CCF did a dilation of stricture and pouch for me 2 yrs ago. Maybe they can do that for you? Best of luck. 3stage Jpouch 1992 facing a redo myself for twisted pouch and pelvic floor problems, herniated pouch misdiagnosed have CD instead [ more ]
bluemusic4us It's been two years since my jpouch surgery. There was a sinus leak and I've been unable to have the take down. Saw a specialist that said he could do a surgery that should allow for takedown. But there are risks, etc. So I have not done that and may not. My life has been so much better in the last two years. The ileostomy is a hassle sometimes, but nothing like what life was like before. All the docs say that I can live with the ileostomy as is and no other surgeries are required. It's... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need advice regarding surgery
S Solomin
BillV I have an excellent GP and a GI who are fully informed about my BCIR and can deal with most medical problems I might encounter with it. If something unusual developed, Dr. Rehnke is just a phone call away. Valuable information about dealing with these problems is contained on the Quality Life Association web page: www.qla-ostomy.org (Medical Information tab). You are wise in doing more research and consulting with your doctors before proceeding with further treatment or surgery. [ more ]
RickIe Thanks.First I would like to discuss it with my doctors and do some research. Do you live near a DR. who can take care of you if you have a problem? Rickie [ more ]
BillV Rickie, the BCIR is done by Dr. Ernest Rehnke at Palms of Pasadena Hospital in St. Petersburg, FL. I had that surgery in April, 2013 and have had very good results. If you would like to talk with me about it, please send me a PM with your contact information. Bill [ more ]
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J-Pouch ForumsK-Pouch Korner
Immodium
vanessavyvanessavy
vanessavy I just pop one in the morning when I head to the gym. I don't eat breakfast since I am training so I eat lunch after the gym. [ more ]
vanessavy Immodium doesn't thicken my output, that is the last thing I want. It just slows it down so my guts are less spadmodic and filled up quickly. I follow Paleo diet so I don't eat grains like oatmeal or peanut butter. But I have tried that before and I poop more. Fiber makes me go so. Never sure how jpouchers swear by the stuff. It clears me out! [ more ]
Bodoni Some foods may slow down time and thicken output. Oatmeal, bananas, peanut butter, etc. works for me. Have you tried Lomotil? [ more ]
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J-Pouch ForumsGeneral Discussion
My nights are like clockwork..only sleeping 2 - 2.5 hours in rotation
dgtracydgtracy
TE Marie Dr. Page was the surgeon that did an excellent job on my surgeries so you did well in trusting him. He trained at Cleveland Clinic and the GI that scoped me at Mayo the first time said I had the best j-pouch he'd seen in 5 years. I'm sure he was joking but I have no complaints about having my surgery done locally. My GI Dr. O'Brien sent me to Mayo, where he trained, when he couldn't get my cuffitis to go away after 5+ months of treatment with canassa and/or anucort. He said he was a... [ more ]
urbhusker Actually all my surgeries (colon removal, large, infected hematoma removal a week after colon removal & 2 stricture procedures) have taken place at Mayo...except the last stricture surgery. That was done in DSM (Dr. Michael Page) and he actually cut scar tissue instead of sending me home to self dilate. Things were getting better on Flagyl but since they have taken me off not so much. I failed to mention I was tested for c-diff and that was negative. My GI doc (Reyes here in DSM) had... [ more ]
TE Marie P.S. I also had problems with frequency etc. You do not need a physician referral to go to Mayo and I can post the information again. [ more ]
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J-Pouch ForumsGeneral Discussion
Skiing with J-pouch?
T Tim_S
clz81 I went skiing last year in the mountains, and it was great! I normally don't take Imodium during the day so I took one around lunch time to keep my afternoon bathroom trips quiet. I took a bathroom break at lunch at the top of the hill and then when we were at the bottom for the day. Also, I think when you are active like that, you don't really think about needing to use the bathroom. Go for it! [ more ]
Stephaniesays91 I've had my pouch almost 6 months now and I'd say if I was stronger I'd defiantly say that would be easy peasy! The first maybe 3/4 months after take down was hell and I never thought I'd be able to do normal stuff again but now it's much easier! I'd make sure you eat your dinner early and not eat til you bursting at the seems tho! My wound still hasn't healed which I think is partly why I'm still not very strong but in another 6 months I'd assume il be running about the place! Steph [ more ]
Scott F I'm extra mindful of food and Lomotil when I'll be away from a toilet for an extended period (e.g. scuba diving from a boat). As far as I'm concerned it's what my pouch is *for*, but it needs an attentive and disciplined manager, at least in my case. [ more ]
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J-Pouch ForumsGeneral Discussion
slowing down bm's
S Stone
Bodoni I take 2 probiotics. One Culturelle capsule in the mornings. And in the evenings, I take one small bottle of DanActive. Personally, I think one cup of non-fat yogurt at breakfast time, helps, as well. [ more ]
TE Marie I was just wondering if all of you are taking a good probiotic? [ more ]
AllyKat My surgeon on told me augmentin is his choose of drug. Dixocyline never did anything for my pouch. I've been on it recently for a few sinus infections and I think it caused the imbalance? Never cut down on my bathroom trips which I found strange. Good luck! hope it works! [ more ]
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J-Pouch ForumsGeneral Discussion
does e-coli mess up pouch?
A aureliasc
Pouchomarx i had an ecoli infection after step 1 and it almost killed me. kept me in hospital for 9 weeks [ more ]
aureliasc Thanks Jan! That made me feel sooo much better! I went and he said I had a nasty and very resistent bacteria strain. I got a "shot" of another antibiotic. So we will see how that works over the weekend. THANKS AGAIN for ALL you do on this site. It is VERY much appreciated!!!! It has given me so much comfort over the past 5 years. [ more ]
Jan Dollar Everyone has E. coli in the lower GI tract. The only time there is a problem is when you get food poisoning with one of those potent strains that excrete toxins (like the tainted hamburger stories). Most E. coli is harmless, except when it gets where it does not belong, like your bladder. Sounds like Cipro is not the right choice for your bladder infection. I'd call the doctor back and get something else if it has been 2-3 days without improvement. Taking an antibiotic that is ineffective is... [ more ]
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J-Pouch ForumsGeneral Discussion
Surgical Dilation....
M Marianna
Marianna ..thanks everyone....I am eager to see what my doctor meant by surgery...at least there are solutions and I will feel better in the long run...xoxo... [ more ]
msh98991 I'vs had to be dilated 3 times now. Once doc attempted in his office (I was not put under ) & WOW!!! Much better to be put under. Anyway, as far as having it done under anethesia, it was quick & painless. I was a tad sore for a few days but no pain. The whole procedure is very much like a colonoscopy. In fact, my doc did a "pouchoscopy" while he was dilating me because it just made sense to do during the dilation procedure & kill 2 birds. You have a prep (may be 2 enemas-nothing... [ more ]
Scott F Marianna, I think folks are telling you about conventional dilation, which is sometimes done under anesthesia, rather than stricturoplasty, which is true surgery. It's best to find out exactly what procedure your doctor is recommending. [ more ]
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J-Pouch ForumsGeneral Discussion
Lomotil - when to take for good night's sleep?
aka KNKLHEADaka KNKLHEAD
Jeff D Rebe0505, I have the same prescription. It's been 1 year since my takedown and I now find myself taking approximately 4 per day instead of the max of 8. KNKLHEAD, I attempt to not eat anything for up to 2 hours before I head to bed. I take 2 lomitol approximately a half hour before bed. Hope you find a solution soon. [ more ]
Rebe0505 lomitol perscription i have is two every four hours up to 8 a day.. [ more ]
aka KNKLHEAD Appreciate the info! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Please, what does this mean?
B beckysmom
beckysmom Happy New Year Jan! Thank you for responding! [ more ]
Jan Dollar Yes, metaplasia and hyperplasia are typical cellular changes in response to inflammation. All j-pouches have this to some degree because of the use of ileal tissue as a reservoir (the mucosa is adapting to the fecal stasis). Jan [ more ]
beckysmom I think so, Thank you. Well, my daughter still has speak with her surgeon but the on call dr said they see those results often and it is just indicating inflammation. [ more ]
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J-Pouch ForumsGeneral Discussion
pancreatic exocrine insufficiency
winter wishwinter wish
winter wish hi I think the biggest thing is to stick to a low fat diet. Have you tried Questran or cholestogel, for bile acid malabsorption ( the terminal ileum is needed for enterohepatic system to work), this may help fat malabsorption. It doesn't work for me (makes the fat malabsorption worse due to the fact that I have too much ileum removed but if less than 100cms removed it should help). Have you tried a proton pump inhibitor with the creon, as it helps with the acid environment, as too much acid... [ more ]
wazzou2 Hi there. I see this post is 6 months old or so, but nobody seemed to chime in. I have fat malabsorption and fatty stools all the time. I am also taking creon, but it doesn't seem to help much anymore. Have you found any success in treating this? [ more ]
Cez Hi Winter Wish, I'm going through the same process at the moment so we might be able to help each other! I was diagnosed with chronic pancreatitis (aged 12) just 2 years before my UC appeared. i had my pouch operation aged 17 and I'm now 27 and up until now so far so good! No problems with my pancreas since that initial 1st attack, so my GI who i see now thinks it was a missed diagnosis and maybe it was auto immune pancreatitis. She's running tests on me at the moment and my faecal elastase... [ more ]
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J-Pouch ForumsK-Pouch Korner
happy new year!!!!
D dpol
skn69 Ditto...I didn't even notice! [ more ]
dpol Reading my post now, I can see I was over served last night. The second "all" was supposed to be "have". [ more ]
skn69 Thanks Dpol, To you and yours a happy and very healthy new year....and to all of us...let our pouches be kind to us and our valves stay unkinked and continent! Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Inflammation of the rectum
G grandmaof1
grandmaof1 I found a website for it. Thanks so much. [ more ]
grandmaof1 Great Idea Rebecca!! I am going to look up the diet. I want to go off Cipro starting in January. Is this a diet you found that worked that you made up for you or on the web? Thanks so much [ more ]
Rebe0505 grandmaof1 maybe its the fissure and /or sibo which i have been talking about on threads..you certainly can try the diet idea to see if it helps removing all starchy carbs and lowering sugar to say fruit..if its bacteria overgrowth i am finding it really helps got me off antibiotics so far for first time in 7 years.. [ more ]
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J-Pouch ForumsPouchitis
bacteria overgrowth issues seem to be eliminated with just diet
R Rebe0505
sudie Rebe. I must say I am doing the no carbs as you posted the last two weeks, and can't believe the difference was going up to 20 times a day this has greatly improved,was put on a gluten free eating plan by dietician made no difference but no carbs and low sugar has made life more bearable went for a picnic with extended family and only need a loo once so thank you and keep us updated on your progress as it is encouraging [ more ]
AllyKat Ok so today I cut the carbs and sugar out. It is a good day [ more ]
Rebe0505 two weeks down and holding on my diet and my probiotics just in case they may aid the diet..no antibiotics!!!!this is a record for me...never could go two days without them before in 7 years of having jpouch... again absolutely no starchy carbs of any kind(grains (flour),potatoes,rice,pasta bread,sugar less exact..some sugar eaten in yoghurt,natural to fruits and veggies and i eat fruits(no limit at this time)doing well with this but might experiment with limiting fruit a bit..however fruit... [ more ]
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J-Pouch ForumsGeneral Discussion
shot gut/rapid transit/weight gain
BM boy's mom
Goody2shoes Had a discussion about short bowel syndrome - just yesterday with my surgeon My small intestine has 2 metres of functional bowel (2 metres up to ileostomy, 40 cms none functioning beyond that) I had read on the internet that small intestine was around 7 metres long - and wanted to know why mine was only 2 metres long(I have not lost any small bowel, other than a small amount to make j pouch that is not functioning) I have a high out put stoma, but as my haemoglobin levels are increasing and... [ more ]
Bodoni A friend of mine with a Koch pouch has a short bowel. He has had this for over 20 years and has no problem with diet or nutrition. In fact, he gains weight too easily. [ more ]
boy's mom Thanks - this is interesting for me to hear that there is still improvement years out. My son is 13 and had his surgery in April - so he is 9 months out. He has developed Crohns (takes humira and methotextrate) still seems antibiotic dependent - so is taking augmentin or cipro all the time and has started a pretty restricted diet which has cut down his frequency but things still move through him quickly and weight gain not happening. Just wondering about this concept of "functional short... [ more ]
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J-Pouch ForumsGeneral Discussion
Pain at old ileostomy site.
J Jaypea
nikiki Great to hear you have relief Jaypea. [ more ]
JeffDC Ditto on that obstruction. That happened to me, and after a short while, the pain grew to include the left side as well. Needless to say, I am very attuned to any pain in that area. [ more ]
Jaypea Thanks everyone. It is not an obstruction anymore as my output renewed itself last night. Whew! The area is still sore and aches but I'm leaning a little more now towards a pulled muscle. I don't have any bulges. I appreciate everyone's replies. This group is great. [ more ]
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J-Pouch ForumsGeneral Discussion
Don't know what to do...
D Daisy18
Scott F I'm sorry you're having such a rotten day. Once you get this acute event sorted out I'd suggest scheduling an appointment with your surgeon. If he suggests a procedure to prevent future prolapses, you may have to press him on how many he's done. Experienced people will be quite rare, and you might be better off shopping around for an experienced practitioner. Most of this is premature, though; I'd just start with an appointment. [ more ]
Daisy18 Thanks everyone. At the ER now. Things got a little worse. I think my intestine prolapsed again. Just scared for what this all may mean. [ more ]
Scott F Do you have a gastroenterologist? If so he/she might 1) not be on vacation, and 2) be able to take a look with a scope. Something has you a bit blocked, whether it's a prolapse, stricture, or perhaps a partial obstruction upstream. In any case the liquids would be prudent, I think. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pain increase and delayed peroid
B beckysmom
beckysmom Thank you Jan. She finally got her period today. [ more ]
Jan Dollar Just a guess, but I would suspect that the scoping could add extra irritation to an area that was already engorged and primed for pain. Could even be a leftover ovarian cyst from a prior cycle that was swelling again from her current hormonal phase. Any recent weight loss? That could delay or skip a period too. Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Cyst, scar tissue or fistula?
S Sweetie1234
Sweetie1234 Thank you all for the responses! It's nice to know I'm not the only one dealing with this. I have an appt. in a few weeks with my surgeon for him to examine me and talk about my options. I also have a pelvic MRI (with contrast) scheduled, which I'm hoping will give me more insight on what this is. I'll let you all know when I get some answers! [ more ]
liz11 So best way for them to see whats going on is a combination of a Pelvic MRI with contrast AND an exam under anesthesia. Whatever you do , please please please find a surgeon who is very experienced with this stuff. [ more ]
Ashlea Sounds like what I had. I had a rectovaginal fistula. It started out small and within days it grew to where it was painful to sit down. My gyno DR said it was a cyst so I went in for surgery only to find out that it was a fistula. It was a wasted surgery and a painful one for no reason. After finding out it was a fistula, my gastro DR put me on Remicade. I think that it is a miracle drug. Not only is my fistula gone but my Crohn's is under control. I would definitely get a second opinion... [ more ]
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J-Pouch ForumsGeneral Discussion
The time has come
ManchesterManchester
BillV Knklhead, quality of life issues were very significant in my option selection when confronted with the medical necessity to have my J pouch removed. I had the bag between pouch operations and was greatly relieved when it became history. The prospects of an ostomy was an issue for both my wife and I and presented distinct limitations on intimacy, among others. We were thankful that I had the BCIR procedure which made life close to what I had prior to my first surgery. She has been very... [ more ]
aka KNKLHEAD I hope all works out well. I am on the cusp of having a pouch excision, as well, with what I consider chronic issues with abscess and pouch leaks, etc. I have been progressively tired and weak, taking antibiotics and my surgeon and I have pretty much resolved (but for one more visit to Dr. Remzi and Dr. Shen at CC) to go back to the ostomy. When I had the ostomy I felt perfectly normal and healthy. I didn't go to bed at 9:00 and wake up four times a night to go to the bathroom. I am very... [ more ]
Jaypea I had an iliostomy for 1 1/2 years before I had my j-pouch formed. Once my colon was removed during the first surgery I felt like I had entered a totally new way of living. I was pain free, worry free, and not so depressed. I felt like my ileostomy had given me my life back. I worked full-time, played in a pipe band, participated in all kinds of fun activities and never had a blowout or leak in public. I opted for a j-pouch because during the initial urgent surgery my colon had been removed. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stomach Pain - Hard to breathe in deep
F feirs1
kta I am sorry you and your son are going thru this. As far as diet goes, it took my pouch a long time to adjust to fruits and veggies. For me, starting out slowly and adding items one at a time in small quantities was the key. Hopefully, this will be a passing thing for him. [ more ]
TE Marie Have you tried to make fruit smoothies with a protein mix for your son? I make one once a day with frozen fruit and stick in a carrot or fresh spinach too. I always include a banana. I use PlantFusion a plant based protein powder but there are many other's out there. There are others that make smoothies out of veggies but I'm not very experienced with those... I hope he's feeling better real soon [ more ]
Lesandiego I had pancreatitis prior to my J-pouch. It was a side-effect of the drug Lialda that I was taking to manage my chronic proctitis. Spent 3 days in hospital and liquid diet for a week. After that, I never had a problem again or restricted my diet. [ more ]
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J-Pouch ForumsPouchitis
Cuffitis pain is killing me. What can I do?
B Big-V
Scott F There's a Cleveland Clinic in Jacksonville, but I don't know if the have any significant IBD/J-pouch expertise. They share a name but they don't really share staff, as far as I know. [ more ]
Big-V Thank you Rebecca and Jan for the help. I honestly think Jan hit the nail on the head. I did some research into Anal Fissures and started to follow a prescribed eating plan as well as care plan and the difference is night and day. I am also going to contact the Cleveland Clinic to see if I can find a referral in my area. Thanks and God bless. [ more ]
Jan Dollar While cuffitis will cause crampy pain, it should not cause big time serious pain. I wonder if you have an anal fissure in addition to your cuffitis. That would cause major pain and OTC pain meds would not do much. Also, inserting Canasa suppositories would likely make it worse. In that case, oral mesalamine is a better bet until things calm down. Even anal irritation would be worsened by suppository insertion. Norco, Vicoden or codiene would help with the crampy pain. Jan [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
A New Problem
Mema 1Mema 1
Mema 1 I get pressure when it feels like I need to go, but nothing comes out, and pain that shoots from my stomach and out the rectum with a gurgling sound, so I know it's gas. [ more ]
phonix2g Do you have any anal pressure or pain? [ more ]
Mema 1 Thanks, Jan, that's what I thought as well. I've been using the Canasa Suppositories, and they don't seem to be touching it. I thought maybe I'd stop for awhile to see what happens. Although I don't seem to be going much since using them, it seems that all of these symptoms happened after I started using the suppositories. Don't know if it's just coincidence or not....my pouch as never been a happy one, and I'm a very stressful person, so I'm sure that it's all tied into one. Hopefully the... [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Not Sure What is Going On
C ChicagoDrew
feirs1 What have you tried so far? Are you taking any medications? Have you tried eating just rice or something that is slow digesting? Any chance you could have pouchitis? Probably makes sense to reach out to your doctor especially if this has never happened to you before. [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Back to Ileostomy again?? To be or not to be???
T Tana
Tana Dani, just wanted to know if I may the circumstances causing you to go back to ileostomy. It may help us figure it out? Apparently I have paradoxical non relaxing puborectalis and in Manomotry studies I flunked two tests. I also have an angulation of intestine and they said my pouch is angulated??? Not sure what all this mean but the prolapse and blockage of80% is my biggest concern. What's your diagnosis [ more ]
Tana Thank you all for your advice and experiences. It's nice to know you're not a freak because you have half your guts missing:-) Well I am feeling better however being off the Remicade for preop prep has been difficult. All my joints and muscles hurt so bad I can barely get out of bed other than to run to bathroom with diarrhea. I have my great days and more bad days but we all do I guess with Crohn's. After 20 years of jpouch I think it's time for us to part ways.. I read that CCF did a bowel... [ more ]
SueH I didn't want to read and not leave you with positive thoughts and prayers for your decisions. One thing I will say: permenant ileostomy and stoma are a totally different animal to a temporary one. Through my nursing I have seen lots of perm and temp and the perm ones temped to be so better behaved and easier to manage in general. I know lots of people who chose to lose their pouch and are so glad and are now living healthy active lives. I wish you both the very best of luck. [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
persistent pain in feet, legs ...
skn69skn69
Jaypea I'm wondering if you have some kind of peripheral neuropathy? This is pain that is generated in the nerves and does not respond to anti-inflammatories. It is common in people with diabetes or those undergoing chemotherapy. There are a whole host of other things that can trigger it. It looks like there are lots of other great suggestions from people who have "been there, done that". Good luck with finding a solution. Michelle [ more ]
skn69 I already have an assortment of custom and OTC insoles and arch supports...they have always worked for me before but now they do nothing...I have 50 pairs of shoes and none are comfortable anymore (sound like a girl, don't I?)...I was ok in crocs flip-flops and am fine in scholl clogs funny enough but anything else is murder and brings tears to my eyes...I limp! It is mostly the right foot but the left ain't so hot either... Am already on twice daily anti-inflamatories but need to do... [ more ]
BillV You may want to try shoes with a good arch support or orthotics. I have significant foot pain when I walk bare footed on hard surfaces for a short distance. My doctor suggested that I wear New Balance brand shoes with a roll bar, and that corrected the problem. The ones I use are Model MW811, but New Balance should have a comparable women's shoe. There probably are other brands with similar features. [ more ]
See all 8 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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