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J-Pouch ForumsGeneral Discussion
ohh my rectum
Akk3769Akk3769
ljk Thanks so much for the replies, the reason for asking is when I had my first surgery 8 years ago the surgeon said that the crohns/colitis qas in my lg intestine plus my rectum. I am still adjusting to the jpouch and my mind races that my crohns is back, so scary! I am still having BAD butt burn, incontinence,and I have this feeling that someone has kicked me in the stomach, also because my buttum is so raw I sometimes have blood in my stool which really worries me but again its not all the... [ more ]
lovedby2 Yes, like mentioned above, the words rectum for example, just fly out of our mouths...even though it is removed. [ more ]
Jan Dollar Yes the rectum is removed, for the most part. In most cases there is a 1-2 cm rim of rectal tissue remaining to attach the pouch to, and generally it causes less problems than trying to completely remove all rectal tissue. But, I should mention that a few people do NOT have their rectums removed, but if you retain your rectum, you do not need a j-pouch. Sometimes too much rectum is left behind and that is a big problem for many. Also, the ileal pouch is referred to as a "neo-rectum," that is... [ more ]
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J-Pouch ForumsGeneral Discussion
Possible New Romantic Relationship - HELP!!
Susan HamiltonSusan Hamilton
skn69 Susan, There is nothing to be embarassed about...Trust me...I have 'sprung a leak' from my k pouch in public, private, in bed (at the wrong time) and once on my 18month old grandson's head! (he came running into the house and threw himself at me! Hubby had to clean up the mess while I got washed)...I have learned the hard way that there is no reason to be embarassed and if they like you, they don't run...hubby is a 'prissy' of sorts...architect, good looking guy with culture and class...I... [ more ]
Susan Hamilton Sharon, thank you!! I'm not even sure if I'm ready to take the dating step but when I am, I know it will be difficult when it comes time to fess up! It's the fistula and subsequent drainage from it that worry me the most and will cause me the most embarrassment. I know it could be quite sometime until it gets to that point, if ever, but I worry about telling any man st the right time. I don't ever want to get that deep into a relationship and then spill my guts and he run. I've lost a... [ more ]
skn69 Susan, It is never easy to move on whether you are perfectly healthy or ill...and our illness is one that is hard to throw onto the coffee table with the peanuts and coctails...most people don't like taking about potty issues especially while dating but just like the rest, it is part of life. My hubby (#2) was very discrete about bodily functions and such, I was shy and terrified about discussing it so I hid behind fancy lingerie to hide the scars, dark lighting, candles and... [ more ]
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J-Pouch ForumsGeneral Discussion
Self Dilation
P phonix2g
cr ❤️
phonix2g Thanks guys. Jeane I bowed out gracefully after a couple days of deep thought and said if I really need to go through with that again you can take advantage of me after you drug me up. Scott that's a funny story but disturbing mental picture still trying to erase that. I asked my wife also if she would do it for me just to see what she would say and she said "no effen way" ha ha I don't blame her. [ more ]
jeane Phonix, I say go for the procedure under anesthesia. You will feel nothing during it. I am never really sore the day after either and the benefit is worth it to be able to fully empty your pouch even if it only last 3-6 months before having to repeat the procedure. It sure seems to beat your current alternative. My GI has agreed to dilate every six months. He said if it becomes more frequent than that then I should really consider pouch advancement surgery which is the last thing on my list... [ more ]
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J-Pouch ForumsGeneral Discussion
endoscopy camera pill
OZOZ
Pouch4Wf Yes, my wife had pill endoscopy. She retained the pill for 4 days and finally passed it. No concerns from experienced GI that pill was retained. Initial report showed possible crohn's but follow-up scope dismissed diagnosis. Remember, pill endoscopy is great technology, but is really not the best test to diagnosis inflammation. It is really used and is very effective at finding bleeding of unknown origin. DP [ more ]
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J-Pouch ForumsGeneral Discussion
drinks with friends?
L loop
CeeeeCeeee My J-pouch is alcohol-friendly. I'm not a big drinker and never was. On very hot days I love beer. No problem. Typically, my preference is for one or two drinks but preferably gin martinis.....usually two. No problem. I don't remember how drinking was with me when I had a temporary ileostomy. My version of temporary was a full year. So, it must have been okay because I don't remember giving up drinking.....or eating. I just tried new things in steps and if a food/drink didn't "work" one week... [ more ]
CTBarrister I went to a CCFA Fundraiser last week which was a "wine tasting" in Bethel, CT, with a friend of mine who has had UC for 30+ years. It was actually the best wine tasting I have ever been to because in addition to a wide assortment of red and white wines, they also had spirits and cordials being offered by the participating vendors. I tried the following: Single malt Scotch Whiskey Bourbon Lemon-infused Gin Dominican Rum Amurula (South African Cream Liquer, similar to Bailey's) Moscato (I... [ more ]
Scott F Not only do individual tolerances vary, but people also vary enormously in what they would call "a bunch of drinks." Pay attention to your body and treat it like it's worth something and things are likely to be fine. [ more ]
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J-Pouch ForumsGeneral Discussion
Partial Blockage
P phonix2g
mainebound I am almost 10 years with a j-pouch and I get sporadic partial blockages. Sometimes I can't determine the cause, other times, I know what caused it. My worst one has been from snacking on stuffed potato skins. But, I will eat potato skins a different day and nothing happens. When I feel crampy, I switch to liquids, water and grape juice, and try to walk a lot and do stretches. I just know that after it passes , I feel bruised and sore in my abdomen on the right side (Where all of my... [ more ]
Allison I have had 2 partial blockages in the last two months - never had one before that in 13 years. Does that happen? Can they just start showing up? I think I know what started the first, too much psyllium followed by dry oatmeal without enough water. The second one, however, I have no idea. I'm just getting over this one. I have been putting a heating pad on the stoma area, drinking hot water, not eating very much and eating figs which usually shoot right through me. I've also been exercising... [ more ]
TE Marie It sounds like a partial blockage. I've been getting them as well. As long as you are still passing stool that's good and there isn't much anyone can do for us. Drink some white grape or apple juice to help move things along as well as drinking warm tea. Warm baths help too. I've been eating mainly soft foods since my last one and gradually adding back in my safe foods, like baked chicken and mashed potatoes. I have daily protein fruit smoothies and a lot of Greek yogurt. My surgeon ordered... [ more ]
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J-Pouch ForumsGeneral Discussion
Butt Burn - Barrier Wipes?
WBrooksWBrooks
DON alias (Butt Blaster) I have said this many times get a bidet it will change your life fighting butt burn. [ more ]
Scott C... Brooks, I hate to say this but I know what you mean. I am almost a 6 year frequent flyer with the J-Pouch mess. Call it what you want but BUTT burn is horrible and I live with it. I am a teacher also and it sucks. Here is what I found that helps me: ILEX. Nothing else works or is better in my opinion and I have tried everything. I have even went to compounding pharmacies and made my own recipes. I have experimented with nearly everything but it all comes back to ILEX. Next, no many have... [ more ]
PDXDavid It's great you are using Calmoseptine. It's worth its weight in gold! Now as for your wiping. Stop that. On behalf of your backside, let me say, "Ouch!" At medical pharmacies they sell squeeze spray bottles for peri-anal washing. I take one with me whenever I leave the house. Just fill it with warm water and spray it on your bum after a BM, then pat dry. Don't wipe. It works surprisingly well, though you might need to repeat the procedure. (I sometimes carry 2 bottles. Better too many than... [ more ]
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J-Pouch ForumsGeneral Discussion
Probiotics
B bratcat
ljk A PM would be great if you can Thanks again LJK [ more ]
ljk Hi My MD gave me probiotics too Align samples, I took the first capsule and found myself inthe bathroom all day. Do they have a laxitive in them? He also never explained why I was to take them. Ya, I did not like that at all. I think I need to find a new MD to see. Well then I tried them again but this time I opened the capsule and only used half and I put it in my drink and that was Ok! What are the benefits? Does every jpoucher use them? thanks so much LJK [ more ]
phonix2g I agree with Scott when I got the powder VSL samples from my Dr. I mixed it with yogurt and was shocked by how the flavor of the yogurt was not affected at all. Seemed like a perfect marriage. [ more ]
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J-Pouch ForumsGeneral Discussion
No "action" from ileostomy
LB Lisa B
New J-Pouch I am almost 2 weeks post (surgery at Cleveland Clinic). I am still 'measuring' and was told if I do not have at least 800 cc's per 24 hrs. to contact my Ostomy nurse. I eat 5-6 small meals a day, drink inbetween and chew like crazy. Good Luck! [ more ]
Lisa B I don't think he is exaggerating. I'm very concerned and really want him to see another dr, since his just tells him to stay hydrated. I think he's vomiting as well. Scary... [ more ]
Pluot This is scary. I'm surprised he isn't vomiting after days of no output though?? Could he possibly be exaggerating? [ more ]
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J-Pouch ForumsGeneral Discussion
Extreme fatigue?
H hails1
mainebound Have they checked your B12 levels. If you are low, it can really zap your energy! [ more ]
TE Marie There are a lot of things that could be going on such as fibromyalgia which includes chronic fatigue and the ideas above. Please start out with a Rheumatologist to be checked out for autoimmune problems. There is a reason why you are feeling the way you are. You might want to do a search for fibromyalgia, chronic fatigue, sleep apnea, restless legs syndrome, or by your symptoms and see what you turn up on-line. [ more ]
bandit Have you been tested for sleep apnea and the other associated syndromes (restless leg syndrome and periodic limb movement disorfer)that can keep someone from getting a good night's sleep? Iron deficiencies can contribute significantly to these disorders. [ more ]
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J-Pouch ForumsGeneral Discussion
Meds after j pouch surgery
B bandit
bandit Again, I say thank you to everyone for your insight and information. I realize I cannot predict the future and should deal with what is on the table now. I am just so depressed and afraid right now. I will see the GI doc again in January, after which he plans to do a scope. My impression is that he wants to give the remicade some more time. Next infusion (#6 or 7) is next week and hopefully will see some progress. If no improvement, I will push to have an appointment sooner. In early... [ more ]
Scott F The folks here have a variety of histories. You are likely to differ in important ways from many. Someone whose colectomy was for FAP will generally have an extremely different experience from someone with Crohn's, which in turn will be different from UC. OTOH we will tend to share some experiences (e.g. butt burn). [ more ]
suebear It's great that you are looking around at this site and observing others recoveries. Yes, some people do continue to have manifestations of UC post surgery; either in the cuff, or arthritis, etc. Some get chronic pouchitis, and thousands of others are like me; I take no medication for my pouch or anything else. I'm 12 years from surgery and I live a very active life and no in my close circle of friends would consider me different than them. Like you I had read this board and became... [ more ]
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J-Pouch ForumsGeneral Discussion
Dr. Shen - still cautious
aka KNKLHEADaka KNKLHEAD
aka KNKLHEAD tdr26: Yes, I had problems after the first procedure. He put two endoclips in to keep the sinus open, but they fell out; therefore, I was back to square one. However, last time he put in 9 clips to ensure the sinus is able to drain. As far as "knowing when the clips fall out," I think they are actually very, very small and I'm not sure what they are made of. But never noticed anything unusual! Dr. Shen said he is "90% sure" and "guarantees" he can keep me pouch happy! He certainly helps you... [ more ]
jeane I too feel miserable when on cipro (and always wiped out), but I feel more miserable off it. My joint pain increases while on cipro and the only thing that does feel good while on it is my normally terribly sore rectal cuff (without cipro, my last 2 centimeters of cuff burn constantly and feels rip raw all the time from chronic cuffitis). I am sorry your procedure did not go as expected. Don't give up. I know Dr. Shen always has some tricks up his sleeve and hopefully this procedure will... [ more ]
Spooky Sorry to hear that the first procedure didn't take, but I really hope this second one is the fix you need! You are in good hands with Dr. Shen. Thanks for keeping us up to date. Nope, you're not unusual, and you're certainly not alone. I ALWAYS feel lousy on cipro. I do a little better on flagyl. I think some of us are just more sensitive to antibiotics than others. Hopefully you won't need them for too long! [ more ]
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J-Pouch ForumsGeneral Discussion
Help is needed!
Bill JBill J
clouseau Just made a donation I believe this site is so valuable and hopefully we can reduce a lot of the expenses. I like the format instead of a Facebook format. [ more ]
TE Marie Thanks Calmoseptine I purchase, use and promote your product and appreciate your support! [ more ]
Jan Dollar Good to know Bill! When you started this thread it was said that none of the sponsors were still paying for their ads, so it appeared that they were getting free advertising. Thanks to Calmoseptine for continuing to support the site! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
How was your stricture treated?
N Nroley
clouseau Dr Shen did several balloon dilitations on me and put me out each time. [ more ]
PDXDavid I've had balloon dilation under anesthesia a couple of times, after digital dilation without anesthesia was just too painful. My doctor said he had never heard of anyone experiencing pain from digital dilation in a regular office visit until me. In a way, I'm relieved that more people experience it.... at least I'm not alone. I should direct my dr. here... maybe he might learn something. . [ more ]
Debra I had a stricture-plasty done several years ago, and I have maintained it well using self-digital dilation. I can actually feel where he clipped it. the recovery for me was not bad. However, I do get sphincter spasms and have fissure issues anyway, and because I suffer some leakage almost daily, I am not sure I want to risk more surgery or even botox to treat it, because of the horror of leaking uncontrollably. [ more ]
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J-Pouch ForumsGeneral Discussion
Return to work
P phonix2g
lablover As I recall, my husband went back to work after a month. [ more ]
suebear Yes, so true and thanks for letting others know. I found that returning to work was far more easy than sitting at home and thinking about my butt 24/7. Work gave me the distraction I needed to begin my recovery. Sue [ more ]
phonix2g I agree Scott. The times I had to sit there and think about my pouch and reflect on what happened were the worst times. I definitely needed the time off but not without distraction most of time being I have a 12,8, and 2 year old and since my wife picked up a job while I was out I was the one doing most of the stuff with the kids especially my 2 year old I had all day when the others were in school. I always pushed myself to do things and stay active after my 3 month bout of anemia. I would... [ more ]
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J-Pouch ForumsGeneral Discussion
Migrating kidney
skn69skn69
skn69 I just decided to check this out on the internet and found out that it is more common than I thought...what I read has me a bit freaked out...aparently there are a basketful of other congenital deformities that come with the Migrating kidney...and I have at least 4 or them! Scoliosis, hemivertebreae, bicornuate uterus, hypoplasia plus all of my other problems...I wonder if this is all part of one big thing that no one has ever bothered to diagnosis??? Sharon From the pediatric Urology site:... [ more ]
Scott F Wow. A tender kidney in the normal location is usually a sign of infection, but this isn't the normal place. The would be hard to miss on an MRI or CT scan of the abdomen. If you want some expert advice, I think a urologist would probably be the best path. [ more ]
skn69 Thanks Jan, No, I have no problem urinating...intake-output is just fine...I drink a lot, mostly only filtered water or tea and my scan showed no stones but the kidney is really enlarged...Yes, I have Dheler's-Danlos so that would explain the connective tissue problem. It is the length of all of the urethrea that confounds me...does it stretch? No one tells me the why...it was never noticed before 2008 and I have had tons of scans in my life...I had just figured that it shifted or was pushed... [ more ]
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J-Pouch ForumsGeneral Discussion
do nights get better?
S Salmak
Scott F A doc that's afraid of Lomotil would probably be incapable of considering DTO (deodorized tincture of opium). TinCan got it right - Imodium and Lomotil are quite different, and many of us seem to get quite different results from the two. It's essentially impossible to abuse Lomotil - the atropine they add is of no consequence at appropriate doses but quite unpleasant if people try to get a buzz from the diphenoxylate. As far as whether things settle down, most folks report that they do. I... [ more ]
TinCan I am two years post reversal and evenings continue to be my most active period (or one of them anyway). I have had to be much more strategic when going out at night but it hasn't stopped me. Immodium and lomotil are not the same thing. They are similar chemically and both are used for treating diarrhea but are quite distinct from each other. I have tried both and they behave differently too - at least for me. There have been several discussions about tincture of opium. You may want to do a... [ more ]
mgmt10 For me the hours between 4pm and 8pm are the most active. (I'm three years post takedown) I usually go once when I get up in the morning then not all day until around 4:00pm. So during those evening hours I usually go 3 or 4 times. It can be a bit of a pain when you go out at night but I guess I have just gotten used to it. I can get in and out of the bathroom now as quick as urinating. [ more ]
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J-Pouch ForumsGeneral Discussion
Probiotic "Ultimate Flora"
CTBarristerCTBarrister
phonix2g I have been taking it for about a month and it seemed like it is helping keep everything moving smoothly. I did see a difference from not taking a probiotic at all to taking this on a regular basis. The difference I saw was having an easier time passing stool when I had to go. It suggested to take it on an empty stomach and I support that because I've had much better results while taking it on an empty stomach rather than after eating. When you first start taking it I would take it when you... [ more ]
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J-Pouch ForumsGeneral Discussion
Pelvic MRI with and without contrast
B bratcat
Jan Dollar Should be fine to take it with a small amount of water. This should have been in your instructions. Jan [ more ]
bratcat Another quick question. I take Pentasa and 6mp. Should I take it in the morning (4-6 hours earlier) or just hold off until after the test? [ more ]
hattie bratcat. I have been getting pelvic MRI's with and without contrast annually for many years for the same issue-fistula. I NEVER was told to take dulcolax or anything else--- just fasting for about 4- 6 hrs before the test. Never had a problem doing or having the Radiologist reading the test. Your radiology facility must have thought u had a colon. [ more ]
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J-Pouch ForumsGeneral Discussion
Dr. Milsom @ NY Presbyterian
S stuffperson
Anushka What about Dr. Richard Whelan with St. Lukes Roosevelt? He seems to have such a stellar reputation as a colorectal surgeon, but never mentioned on this site. Why is that? He did my colectomy and J-pouch and was excellent. [ more ]
phonix2g Yeah it sucks having to do all this research and go through such a rigorous and monotonous process to find the right Dr but in this case its definitely worth the time and energy to do the proper research and find the right DR for you. Remember this Dr is going to determine how the rest of your life is going to play out so make sure you get as much background and do as much investigative work as possible. I think there are always positives and negatives to every Dr but you gotta decide what... [ more ]
stuffperson Thanks all. Phonix, that level of care is amazing...never heard of that. My UC was never that bad. I could live and manage, worked out, went out, etc. Until all the complications in 2011, at least. That's when some thought it might be more like Crohn's due to a stricture, abscess, etc...but it's indeterminate or just an unusual case of UC. The distinction isn't all that clear in all cases anyway. My bag has functioned well enough, it's just that I don't want one anymore. But it's tough going... [ more ]
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J-Pouch ForumsGeneral Discussion
Low triglyceride
K KReid
Jan Dollar I haven't, but my cholesterol levels dropped about 100 points after my j-pouch surgery. Perhaps you are not absorbing as well, but unless you are actually malnourished, depleted in some nutrients, etc., I would not worry about it. If all your other labs are within normal limits, you should be fine. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch Advancement Surgery / Retained Rectum 6cm!!
P Pouch4Wf
Nomoremeds I also have bad inflammation in the 1-2 cm of my cuff, and am scheduled for pouch advancement surgery in November. My guess is that 6cm is too much cuff to do a transanal pouch advancement. As explained in the article below, the initially stapled anastomosis must be "within 3 cm to 4 cm of the dentate line" for the surgery to be feasible. http://rapidshare.com/share/6D...1AF6DAB71B3143DA6741 They simply cannot pull the pouch down that far without making an abdominal incision and basically... [ more ]
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J-Pouch ForumsGeneral Discussion
Antibiotics, Oct 22, 2013
B Bodoni
skn69 Here is France, where most scripts and meds are fully covered under the social health insurance...antibiotics were served up like M&Ms...until about 5yrs ago...when they started an add campaigne called 'antibiotics are not automatic'...meaning that they should be last resorts and not firsts unless expressly indicated. They have managed to lower the prescription rate by 20% +/- but are still having problems convincing people that they are usless for viruses... Also we are having a really... [ more ]
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J-Pouch ForumsGeneral Discussion
Best product
B Blairisking
ELH Pure Citrus Orange Air Freshener. It uses highly concentrated oils extracted from fresh oranges to kill odors instantly and leave the air smelling clean. I've tried this product and I like it. [ more ]
PDXDavid I read an antique newspaper opinion piece that was laminated to the tabletop of a restaurant a while back, which I believe may hold the answer to this problem. The writer was aghast (or a-gassed) at the growing trend of people placing toilet facilities INSIDE their homes. The author chided his excessively-plumbed readers for their thoughtless toilet placement decision, which needlessly assaulted their families' and guests' olfactory senses, while the tried and true Out House was such an... [ more ]
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J-Pouch ForumsGeneral Discussion
Too much gas/air in stomach & intestine...
bootstrapbootstrap
TE Marie I agree to stop the probiotics and take the antibiotic. My probiotics, VSL#3DS cost that for 40 packets. I have to go back to paying for them again after the first of the year until we reach our deductible, ugg. The thinking is that probiotics are counter productive. The antibiotic with be killing the good bugs you are adding along with the bad bugs and may miss some of the bad bugs... My Internist has me double up on probiotics for a while after taking antibiotics and not take them while on... [ more ]
vanessavy I need a coupon for Xifacin. Where did you find it> I would fill my script tomorrow if I could. It would cost me 1500 to get mine out of CVS, my insurance also stopped covering it. [ more ]
Bergie77 Bootstrap: is it possible you have a sinus tract in your pouch? [ more ]
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J-Pouch ForumsGeneral Discussion
Nupercainal
N nvu
PDXDavid I got some nupercainal. It works! I had forgotten about it. Thanks for the reminder - it's nice to have options! [ more ]
PDXDavid OK, now I remember. I used it for a while when I couldn't afford my lidocaine prescription. As I recall, it wasn't as effective as 5% Lidocaine, but it did have a noticeably beneficial impact on the pain associated with anal excoriation and butt burn. I'm going to get some and use it in those instances where lidocaine is perhaps overkill, and the nupercainal would do the job. Thanks! . [ more ]
ELH No, Nupercainal has dibucaine 1%. The others have lidocaine 5%. Both are local anesthetics. [ more ]
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J-Pouch ForumsGeneral Discussion
FODMAP AND caffeine, alchohol with jpouch
R RW
PDXDavid I can't bring myself to give up coffee either. I drink 2 or 3 cups a day, in the morning. I try to drink caffeine free sodas but I break that rule at the slightest provocation. From what I understand, caffeine is not the only colonergenic in coffee, so even decaf is a gut stimulant. I don't drink, so I can't comment on that except to say that I read somewhere that Dr. Chen recommends a glass of wine at bedtime to introduce acid to the gut. Not sure of the science behind that, or if it is... [ more ]
RW Thanks to all for your feedback. I am starting this FODMAP diet and so far I feel better with a little less frequency and urgency. i have eliminated glutens and lactose and cut caffeine, drinking 3/4 decaf 2 cups a day. No headaches yet! I am going to try no beer for a week, just wine and then add the beer back. My appetite for alchohol is down since surgery 3 yrs ago, the most I will have is a beer or glass of wine. thanks again to all. [ more ]
liz11 I do FODMAP and drink red and white wines, dry though as i despise sweet wines. I also enjoy good draft beer but find that they are more problematic than the wines. Real english ales seem ok, probably because they dont have all the junk in them as most american beers. [ more ]
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J-Pouch ForumsGeneral Discussion
Lifting and pouch damage?
IS Iron Sights
vanessavy Congrats! I was part of an Oly lifting gym but haven't been able to after having some iron issues but can't wait to get back to it. I find since having my rectum removed I can't lift as heavy. I was told it is a kegal thing but I will get back to a PR with a deadlift eventually... As far as hernias. I have one small hernia. So far it isn't going anywhere and I was told it might not so just be smart and lift with legs and wait until you are cleared to lift over a certain weight. I wanted... [ more ]
Jeff1959 I am an avid weightlifter. This summer I set the Michigan Senior Olympic record for my age group (50-59) and weight class (198lb) with a bench press of 315 pounds. My surgeon at the Cleveland Clinic as well as my primary care physician are aware of my weightlifting and encourage it. I resumed my lifting six weeks after my takedown, my doctor sent me for an ultrasound five weeks post takedown to ensure I was properly healed before I resumed lifting. It has been just over three years since my... [ more ]
Iron Sights Update: Granted, some of you may have already known some of this info, but I hadn't come across anything specific and thought someone could use it. After speaking with the surgeon, prolapse is understood to be typical of those who receive the pouch at a very young age (I understood that to be around <12 yrs old). Prolapse due to lifting exercises or otherwise is relatively unheard of. Furthermore, the information I'm repeating here is specific to the j-style pouch, disregarding other... [ more ]
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J-Pouch ForumsGeneral Discussion
Immodium and pH levels?
I iHateColitis
PDXDavid Could this dietician be confusing Imodium with omeprazole? [ more ]
Jan Dollar I am unsure what she was talking about. I am unaware of an effect on stomach acid by Immodium. It slows the gut by fitting into the opiate receptors. I never heard of that side effect. I've been taking it for 18 years. If you really concerned, I'd ask a pharmacist, who actually knows the specifics of drugs. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Looking forward to better days.......................
DH Donna H
TE Marie Donna, it sounds like you have left no stone unturned with your j-pouch. You even had to suffer through your cancer with a bum pouch I'm glad you are at peace with your decision and hope your new pouch works great. Those better days are close now [ more ]
Donna H Sharon, I can't imagine how difficult this had to be for you at such a young age. No child should have to go through the perils that you have gone through. Yep, life is not fair sometimes but it sure can make us stronger. I am looking forward to the freedom I have been missing and yes, just taking a walk without the pain and worry about all the stuff that goes with incontinence. I know there will be a period of adjustment but also know that in a few months will be experiencing life the way... [ more ]
skn69 Donna, I am so sorry that this road has been so terribly miserable for you...it is just not fair...one of the reasons that I had the k pouch done was full blown anal incontinence...no sphincter whatsoever in my case (destroyed at 2 during my 1st surgery...I ended up with my colostomy. After the reconnect at 3 I was partially incontinent...at 10 they tried to fix but made it worse. At 14 & 18 had 2 gracillis flaps done...the 1st worked for 2yrs, the second was a failure from day... [ more ]
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J-Pouch ForumsGeneral Discussion
can you 'damage' the pouch by what you eat?
I iHateColitis
mgmt10 Highly doubtful that you can "damage" your pouch. My sister has had her j pouch for 22 years and drinks coffee everyday.I drink a lot of coffee too. Maybe if you drink gallons a day! I don't like soda so I don't drink that. [ more ]
Scott F This idea sounds like a heck of a stretch. The pouch is just restructured ileum, though it gets a bit more like colon over time. Plenty of us have individual food sensitivities, and plenty have IBS, but these have essentially nothing to do with the pouch. [ more ]
mainebound That is a good question. I eat anything and everything except for gluten (95% of the time). I do sometimes have an upset pouch, but I never learn I don't know if anything is actually damaging though. Becky [ more ]
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J-Pouch ForumsGeneral Discussion
To drink or not to drink
A anuke76
Scott F It may be helpful to remember that dehydration is a common issue. Withholding fluids at any time is (IMO) asking for trouble. There are much better ways to control the consistency of stool. [ more ]
Jan Dollar This is another example of there being no one right answer for everyone. It is more common for j-pouchers to have problems reducing diarrhea, and one strategy is to avoid drinking much fluids with your meals, and hydrate well between meals. If you have problems with frequent obstructions (not common) and these are food related (even less common), then drinking fluids with meals makes sense. Some people are even restricted to a liquid diet only. But this is rare. So, I would focus on the... [ more ]
skn69 I drink, a lot of fluids and at specific times...I have about 1 quart of fluids when I wake up (water, coffee & juice), at least 1 glass of water during meals, 1 between meals and 1-3 mugs of tea in the evening...that gives me about 2-3 quarts/day...I still get dehydated if I don't drink enough water (coffee and tea or alcohol don't count...they dehydrate you as much as they hydrate)...I don't care if I drink during meals because I do so before them...you need to remember that... [ more ]
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J-Pouch ForumsGeneral Discussion
In shock after surgery
P PDXDavid
jalex ...Good attitude my friend! [ more ]
PDXDavid My surgeon, Dr. Frankhouse, just called, and we had a great talk. He said the bidet is actually the better option to a sitz bath, so not to worry about it, just so long as it effectively cleans the wound. I feel a lot better about things, after the shock has worn off. I guess it is medically the best procedure to do, although it is tough on the patient for a short period. So, I'm pretty sure if given a choice, I would have chosen long-term good at the cost of short term pain anyway. I told... [ more ]
jalex David, I am just reading this after my 11th shower of the day. I don`t feel so bad now after reading what you are going thru. Hang in there and for Gods sakes put that mirror down. Which surgeon did you end up going to? Good healing thoughts coming your way!...J [ more ]
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J-Pouch ForumsGeneral Discussion
13 Best Fodds for Crohn's Disease, Almond Milk
R Rocket
Rocket Thanks Marianne, The Rice Milk was the last thing I thought it was because I have been drinking Rice Milk for at least 15 years if not more. [ more ]
mgmt10 Glad to hear it's not a Crohn's diagnosis. It's amazing how something innocent like rice milk gave you so much grief. Hope you continue to feel better. [ more ]
Rocket Got my results yesterday. The CT Scan was negative and the doctor agreed with me that it was the Rice Milk giving me so many problems. Then he scoped me and all was clear so for now I am off the meds. Rocket [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Tired of fighting Pouchitis
LZ Lora Zwart
suebear I guess you have to ask yourself if you want to continue taking medication? There are many pouchers on this site who have given up their jpouch because of chronic pouchitis, and gone back to an ostomy. None of them have regretted their decision and they all say they have a much better quality of life. Sue [ more ]
CTBarrister That is probably all good advice. I certainly would not give up after trying only one or two antibiotics having adverse effects. In my current rotation in which lactulose and xifaxin play key roles, I take cipro or flagyl only one week per month. Most of the members in my CCFA support group are taking biologics to treat IBD, and they report success with one biologic after another has failed. My GIs have mentioned Remicade in conjunction with treating pouchitis, although they have... [ more ]
Scott F You've been through a lot, and probably tried a lot of things. I'll offer some possibilities I didn't see in your post, just in case they were skipped over, or not tried aggressively: 1) Most antibiotics are entirely different chemicals from one another. They do not all have a propensity to affect the liver. Are there perhaps some good, safe candidates you haven't tried simply because they're called "antibiotics?" Xifaxan, for example, would be a very different choice. 2) I take a *lot* of... [ more ]
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J-Pouch ForumsGeneral Discussion
Major life decision
K kecknickn
Grug I too am facing the decision to J or not to J. I have had the bag for 22 months without any problems other than severe pain from time to time with the rectal stump. This is about to be removed, but with it also will be my chances of having a J pouch. The stoma and bag have served me extremely well and I am concerned that by attempting the J Pouch will introduce a whole new series of problems and issues. The decision not to J I understand would be final. I really am struggling with the decision. [ more ]
kmj I had my j pouch removed 7 weeks ago. It was a tough process but I am doing very well now! I have to deal with my new appliance which can be a pain but at least it is on my terms. Can't say the same for the 7 years I lived with chronic pouchitis. My favorite thing is sleeping all night long now! I used to get up sooo much every night. You will know when you get to the point that you want to live your life, I did and now I can : ) best of luck! Karen [ more ]
chiromancer Seems like you answered your own question. If the ostomoy gets you out of continual pain and hospital stays it would seem silly not to go in that direction. I gave up my pouch at about 18 months and my issues (primarily incontinence with butt burn) while affectinhg the quality of life sound much less severe than yours. The end ileo has been far better for me than the J and I basically do anything I want to do. Why suffer? [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Link between 'pouchitis' after ulcerative colitis surgery and changes in gene express
C cassiecass
cassiecass Thank you I will look into this.I am just a subway ride to Sinai Cassiecass [ more ]
CTBarrister They are doing this genetic testing at Mount Sinai Hospital in New York City from what I have been told. [ more ]
TE Marie Thanks for the article cassiecass! I too had diverticulitis pan colon along with UC pan colon so had the surgery. How expensive is it for them to do the genetic testing on us all to find out where we stand in the continuum? They do biopsies but that's not the same thing. Has anyone had the sort of testing discussed in this article? I sure would like to volunteer to be in a trial of some kind or even pay to have the testing done myself. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
From J-pouch to K-Pouch, BCIR or end ileosotmy?
HH Holly HM
Holly HM Thank you. [ more ]
liz11 Congrats on making a decision and moving forward. Sometimes that is the hardest part. Best wishes with the surgery. You will feel so much better once it is done and you have recovered. [ more ]
Holly HM I think what would be better for me is to remove my pouch totally and go to an illiostomy. After the last two years of leaking and having vomiting and diarrhea, I am sick of it. Apparently when I get almost blocked because of the strictures, it causes those symptoms. When I had my original surgery it was because of a blockage that almost killed me. I don't ever want to get that sick again. The surgeon says it is better to have the surgery now while I am healthy and can tolerate it easier. I... [ more ]
See all 37 replies...
J-Pouch ForumsGeneral Discussion
Update: from Jilly & Life is soooo Bad
JillyJilly
Laurie49 This is wonderful news, Jilly!! Stick with the plan that works and the doctor who prescribed the cocktail. After 12 long years, you know what's best! Huge hugs! [ more ]
TE Marie I need to remember the Canasa for my cuffitis too. I was in denial when I was finally diagnosed with UC, even after a stern talking to from my GI telling me I didn't realize how serious my condition was, it was pan colon. I did let him put me on a heavy course of prednisone for 6 months. I kept on with life and working and doing everything I did before and more, with 2 teenagers, husband, my own business, volunteering the whole 9 yards. That's when I got slapped down by fibromyalgia. Then I... [ more ]
Jilly TE Marie, It took them 12 years to find just The Right combo of drugs. I don't know if I'll flare the second I eliminate just a portion of one of the three pouchitis drugs I'm on (Flagyl, Cipro, and Entocort). The game plan is to have me start the taper next Thursday. Who knows what will happen? My point to you? Keep fighting for better health! Don't just accept your "lot in life" as one filled with pain. And I guess I should also remind you to listen to the Mayo docs!? Hell yes, you should! [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
Well, Jan was right.
P PDXDavid
TE Marie I hope all goes well during your surgery and am a little jealous as I'd like to ditch my cuff. Best wishes for your surgery and yes, Jan is always right [ more ]
suebear Jan is always right. Sue [ more ]
skn69 I am so happy that this is working for you David...keep us posted on what they are doing and how it is working for you... I need one of those doctors here...am going nuts with the pain and have no idea how to get rid of it...Not at all sure that they do that here...they just throw a scipt for codine or opium at you and watch you float away... Sharon [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Panic after injecting.
ManchesterManchester
Jan Dollar There's blood vessels all over the place, but no major ones in the sub-q. Plus those needles are very thin, like insulin syringes. But, if you hit a little vein, you can't just put a BandAid on it and forget about it. You need to apply pressure for 2-5 minutes. Jan [ more ]
PDXDavid Ahhh... I pictured a standard hypodermic needle. You wouldn't think there'd be big enough blood vessels near the surface, on the top of the thigh, to cause such dramatic bleeding. . [ more ]
Jan Dollar Humira is a subcutaneous injection, and if you use the autoject pen, there is no drawback of the plunger. With my Simponi, even without the pen, I cannot drawback on the plunger because of the syringe design. With subcutaneous injections, this is less of an issue. Jan [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Pouchoscopy advice
K ksmarisa
jeane Ditto what DJB has said. I have had several pouchoscopies in the last two years and they are nothing to get alarmed about (much easier to prep for than colonoscopy). I would not even get alarmed if they see some inflammation in your pouch as most pouches have them. I also have a couple of small ulcers in mine, but manage on and off cipro due to some ongoing pouchitis issues and I have ongoing inflammation in my cuff also that is being watched. Make sure you ask for a report and pictures. [ more ]
CTBarrister They are looking for ulcers, inflammation and will biopy your rectal cuff which is where cancer would most likely strike, since it is the one part of the diseased organ that is left in. If you were a dysplasia case pre-colectomy, it is imperative that the rectal cuff be biopsied regularly (I have been told annually for those like me who were dysplasia cases pre-colectomy). Make sure you do the prep and are clear. Good luck. [ more ]
PDXDavid Kate, I've had several pouchoscopies in the past 2 years. In fact I have anouther one day this Thursday. Without exception, I wake up from general anesthesia with no pain from the procedure, and walk out feeling as good as when I walked in. So far, no pouchitis - just some irritation near the cuff, which they feel is from not being able to empty the pouch thoroughly enough due to stricture. They will probably take biopsies to take a close look at the cell structure, which gives them a good... [ more ]
See all 3 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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