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J-Pouch ForumsGeneral Discussion
Burning anal canal
R rashad
RickT I was recently diagnosed with a fissure and you pretty much described my symptoms. I've probably had them before, but never gave a good description to the doctor. They were missed during scopes because, as pointed out by Jan, scopes don't see them. This time it was easily spotted by the doctor because a sentinel pile had formed. What's a sentinel pile? This site has a description: http://www.gihealth.com/html/e...ion/analFissure.html Before I could make it to the doctor I was getting relief... [ more ]
Rebe0505 dort have you considered sibo..bacteria overgrowth..antibiotics control was on them 7 years now dr. shen wants me to follow no starchy carb diet,low sugar..i have had all the above issues cut glass feeling,extreme pain when going in rectum,frequency..for the most part the diet seems to be working i have been off antibiotics for first time in 7 years..but i think perhaps i also get anal fissures as described by some others and jan because it will come on at night and last until next day..i... [ more ]
Rebe0505 rashad..you can take any number of antibiotics,tindermax,amoxicillian,levaquin keflex.. [ more ]
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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 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 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 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 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 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 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 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 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 ]
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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 ]
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J-Pouch ForumsGeneral Discussion
Not Sure What is Going On
C ChicagoDrew
ChicagoDrew Thank you!! Greatly appreciate. [ more ]
skn69 Could be as simple as a case of gastrointeritis or pouchitis or food poisoning...stick to fluids, consomés and soups to keep your sodium up and drink something to keep those electrolites up. If it lasts over 3 days I would consult the doctor or at least give him a call. If you get any severe bleeding, sudden pain or fever then I wouldn't wait and I'd head over to ER...hope that this is only a passing bug and that it leaves you alone for the New Year. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Anal leakage
M Matt34
TE Marie I hope your appointment went well and your insurance woes are over! [ more ]
Matt34 No they have not made my j pouch yet. But it's gonna be happening very soon. Was getting new health insurance first cause my previous ins company cancels the policy end of dec. so new one takes effect jan 1st. I'm getting appointment set up with surgeon on Thursday this week to get scheduled for takedown. Hopefully will have surgery by end of January [ more ]
TE Marie I don't understand everything you are saying. Have they built your j-pouch out of your small intestines yet? In other words are you going to have a total of 3 or 2 surgeries? [ more ]
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J-Pouch ForumsGeneral Discussion
A month post-takedown, nighttime accidents?
A aliiien
ElmerFudd Leakage could be normal recovery, or could be pouchitis. Docs don't like to assume pouchitis this soon after surgery. The stapler they use for the ileal-anal anastomoses is big, so sometimes the stretching of things takes to me to get back to normal. As for the itching... determine if the itch is inside or outside the anal canal. If inside, I'm sorry to say you need to get some medicine up in there. I did this for months using Gold Bond Anti-Itch ointment (OTC). Anything with menthol and/or... [ more ]
Scott F Traveling tend to disrupt our diets, stress levels, bathroom availability, bed times, etc. Each of us varies in how resilient we are when these things are messed with. It's also possible that you've developed a touch of pouchitis, but I wouldn't start out assuming that. You might even have Traveler's Diarrhea. You don't say what you're already doing, so I don't know what to suggest adding/changing. [ more ]
Mark01 I'm coming up to a year post takedown and I still have problems with this. I find it helps if I don't eat for a few hours before going to bed. Also if you aren't already try something like immodium [ more ]
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J-Pouch ForumsGeneral Discussion
I'm Soooooooo Hungry!
C CeeeeCeeee
CeeeeCeeee Milk of Amnesia! What a hoot! Gloria, I bet you have had endoscopies. Just another name for "scopes". Upper endoscopies check everything from the mouth down and into the stomach. (Maybe a bit further than the stomach....I don't know. Those of us with J-pouches have a lower endoscopy from the anus up through the pouch itself. I don't think the scope goes into the small intestine but I really don't know. [ more ]
Jaypea I work in a paediatric hospital and we use Propofol all the time. It is our anaesthetic of choice for most things. It is fondly known as "Milk of Amnesia" Merry Christmas. [ more ]
JeffDC CeeeeCeeee, I hope your procedures have excellent results. 3:30 AM is a God-awful time to wake up, and knowing what you have in store for the day is NOT a motivator. Hope you get back to your "normal" self quickly. [ more ]
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J-Pouch ForumsGeneral Discussion
iron supplements?
B beckysmom
Chris M I get weekly infusions. Dr. is afraid that with all the other issues I have that an oral would just make them worse... [ more ]
beckysmom Thank you all! I'm off to the health food store tomorrow. [ more ]
AllyKat I take Florafix, It is a liquid all natural iron made from fruits and veggies. It does not upset your stomach or pouch. You get it in a health food store. I get migraines from the iv iron. [ more ]
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J-Pouch ForumsGeneral Discussion
Christmas fissure
P Pluot
grandmaof1 I was put on C-Diltiazem 2% cream. Maybe your doctor could call it in and have it made for you. I am so sorry you are going thru this. I know how bad they hurt and I feel so bad. Sending prayers. [ more ]
UjohnjC sorry to hear liz hope it gets better no advice for you sorry my pouch surgery not until feb but curios to what a fissure is ? merry christmass [ more ]
grandmaof1 My GI doctor had a compound made for me. It worked awesome to relax and let the blood flow to the anus area so it could heal. I have to look up the name of it. I am in my favorite place right now. The BATHROOM. [ more ]
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J-Pouch ForumsGeneral Discussion
Fiber
K kubrider
Scott F Most folks take the Metamucil immediately before of after a meal, to give the stuff something to work with. Stretching my "construction material" metaphor beyond reason, if we're making concrete then Metamucil is the paste and food residue is the aggregate. I do take Lomotil at bedtime, and usually get a decent night's sleep. [ more ]
kubrider Thanks again Scott. I'll have to give Metamucil a try. Maybe before bedtime, I've slept through the night no more than 3 or 4 times in the last 5 years, I'm getting tired, haha........ [ more ]
Scott F Everybody is different. I happily eat green leafy salads, but I'm more comfortable with small ones. I eat fruit every day, in moderation. I don't try to find specific foods high in soluble fiber - I just supplement with Metamucil at a dose that seems to make my pouch happy. It's not nutrition, it's just construction material. [ more ]
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J-Pouch ForumsGeneral Discussion
Physillium seed or husk?
AllyKatAllyKat
Jan Dollar Most people tolerate psyllium fine, but it caused a lot of gas for me and increased my frequency by quite a bit. It did thicken my stool though. I had better luck with Citrucel (methylcellulose). It did not cause gas or increase my frequency, other than the extra bulk it caused. I didn't stick with that either because I didn't feel it improved my function enough to be worth the bother. I am not sure there is any particular fiber supplement you SHOULD be using. Just experiment and see what... [ more ]
Scott F Psyllium *husk*. Brand names are Metamucil or Konsyl. [ more ]
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J-Pouch ForumsGeneral Discussion
so it's NOT crohn's?!
clz81clz81
AllyKat I recently had a liver cyst, the pain and it was tiny, but located near a bunch of nerves. I thought it was adhesions acting up. I needed it removed and have been fine since. I hope everything goes ok on Monday. Ugg, the pain until something was decided was the worst. PS, for 10 years my GI has been saying I had CD after every test came back UC. I swear she was determined to find that CD until I had adhesion surgery and the surgeon said there was absolutely no trace of CD. She never said boo... [ more ]
clz81 Scott, I re-read the script for the ultrasound. It does say adnexal mass :-) Doctor's handwriting is so hard to read. I know nothing about this stuff...will find out Monday. [ more ]
Scott F I'm guessing it's an *adnexal* mass on the ovary rather than an adrenal mass. The adrenal gland is pretty far from the ovary. In this context the word "adnexal" just names the general location and doesn't add any useful information. Congratulations (on probably dodging Crohn's) and good luck with your hopefully routine GYN matter! [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Dilation Round 2
P phonix2g
jeane This should help. You may need additional dilations to keep the anastomosis opened. I have had about five and my last one three months ago has been the best. I do still struggle at times with complete emptying which causes a few trips in succession but I guess it's just something you get used to. If there is no anal pain associated with that I can live with it. Good news for you. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
What is the actual Success rate for the Pouch?!
CM chris mitch
chiromancer I think this is right and is one reason why statistics are so misleading. Many people have such bad UC or other problems that even a poorly functioning J pouch is much better. Some people have such poorly functioning loop ileos that even a poorly functioning J pouch is better. My criteria would be if there was any contraindication for the pouch to not do it. That is not saying that it cant be successful but having experienced both a poorly functioning J pouch and good functioning end ileo... [ more ]
CTBarrister "Success" in my mind is measured by what came before versus what came after as far as quality of life. If success is defined as a J Pouch with no complications/pouchitis, then I would not be a defined success. Yet in my mind I was a success because surgery improved my quality of life and as my colon demonstrated when it was removed (it was close to perforating), surgery was ultimately a necessity and not an option. I have had to treat chronic pouchitis since 1995 and despite that, I consider... [ more ]
Goody2shoes Well. what can I say Chris - I had my operation done at a 'centre of excellence' in London - 2 stage, and it has been a year of absolute hell and total failure ........ I am stuck with a non working pouch adhered to my abdominal wall that will eventually have to be removed - and a permanent ileostomy that I absolutely hate - my 'reversal' lasted all of 4 weeks - and I was visiting the bathroom in excess of 30 times a day prior to disconnection (that was every 15 to 20 minutes.....)It was ... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
any harm in taking a course of flagyl?
S Salmak
sudie Vanessey, what strength were you taking of the flagal over the two mouth period I ask this as my surgeon has suggested I take low dosage long term not sure yet what he considers low have appointment in late January so will bring up a few thoughts I am going at least 20 times in 24 hour period so over it all am trying low carb as has been suggested on this site but early days [ more ]
vanessavy Flagly's risk is neuropathy but that is if you use it for awhile. Rotating it and using it for short periods reduces the risk. I used it for 2 months straight and now can't use it anymore due to this. [ more ]
Scott F For me the bulking agents enable me to ignore a sensation of fullness much longer. This enables me to choose a reduced frequency at my own discretion. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
illicit drugs
J Jimmy941
skn69 Jimmy, Thanks for asking the question instead of just going ahead and doing it...it shows that you are more mature than most. I agree with everything that the others say but I will just add that no matter what you do, and if you are asking, you will probably be doing it...please keep hydrated, drink tons of water, juice if you can and whatever you do, Do Not Mix Drugs. Or Drugs and Alcohol. BAD. VERY BAD. You can end up extremely dehydrated, vomitting, and in a bad situation. Also, make sure... [ more ]
vanessavy My surgeon told me to smoke weed. I didn't live in a MJJ state but had a secret stash sent to me from a guy in Cali. So I tried this amazing caramel lollipop and let me tell you. It messed me up. My guts were great and I had NO PAIN but my mental state was really off. I would think cocaine wouldn't do anything different. All intestines, I am not street drug/doctor expert though. Cocaine talk is nothing to me, I am from Miami lol [ more ]
Luton Matt Another thing to consider is the number of people murdered by the cartels who ship these drugs. Any money you give to a dealer is indirectly supporting murdering violent crime families who make thousands of people's lives a misery, let alone the physical harm it can do to any individual user. [ more ]
See all 7 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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