Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsGeneral Discussion
Blood Pressure Medicine bothering J-pouch and intestines
Pilot DebbyPilot Debby
Pilot Debby Thank you for your response! I have a j pouch done at the Cleveland Clinic...I am not familiar with a Koch Pouch. [ more ]
Pilot Debby Thank you...I am just trying to get some meds so I can go in with a list to my doctor. I appreciate your help! [ more ]
Bodoni I have congestive heart failure. I take Coreg and Zocor. For blood pressure - I take Linsinopril. I have no problems. My blood pressure is a bit too low. I get a bit of lightheadiness, but presents no real problems. By the way I have a Koch Pouch. By Dr. Joel Bauer. Mt. Sinai in NYC. [ more ]
See all 4 replies...
J-Pouch ForumsMen's Health
Removal of Rectum J-Pouch & Sexual Dysfunction ??
MagooMagoo
Former Member ❤️
Magoo Thank you Doug .....I hope full function returns for you. My GF Just visited from Calif for ten days and it was great. She wanted to get some use out of me in case my surgery makes him go " Plop " lol I. have no definite date for the surgery so she might come to Visit again...all the way to Ireland . We've only known each other for a year and sex with the Baggie was just fine ...Great in fact so We both hope he works afterwards !! Magoo [ more ]
DougF I have a loooong story with lots of factors but here's the abridged version... I had a sub-total colectomy in 2011, delayed j-pouch decision until this year. I decided against j-pouch and had proctectomy surgery at the end of May. Previous to that I had my first girlfriend in 15 years and sexual performance was excellent. After surgery not so much. I could get aroused but couldn't maintain an erection and could ejaculate without a full erection. While it seems logical the problem is related... [ more ]
See all 21 replies...
J-Pouch ForumsK-Pouch Korner
NUVAL continent ileostomy valve
KS Kim S
skn69 Kim Have you read the post about anti depressors? Not sure if this is your case but I found it interesting that for some people it may explain unexplained leakage. ... just in case, check it out on this forum. I hope that it is nothing serious. Sharon [ more ]
Kim S Well, things were going great after the 2nd revision (June 18th), but I am back to experiencing leakage. At first it was very small amounts, but it has been increasing in amount and frequency. The only good thing is that it never leaks while I sleep. I have an appointment for an ileoscopy on October 24th. This has been a very trying 12 months. After almost 37 years with a K pouch, 35 of those years with very few issues, I'm so frustrated. I may put the NuVal back in. [ more ]
JLH Kim--fantastic news and congrats. the bruising feeling lasted with me for many weeks and indeed it is bruised. would be good to know if there is anything one can do to relieve the problem. hope you are able to rest and stay cool to continue the healing. best wishes, janet [ more ]
See all 34 replies...
J-Pouch ForumsGeneral Discussion
Prolapsed hemorrhoid/skin tag? - UPDATED! :)
SpookySpooky
Spooky Hi Grace, I have two external skin tags that don't bother me at all. The newer issue I have is the hypertrophied anal papilla, which - in terms of the most simple description - is basically an internal skin tag which has prolapsed and is now protruding through the anus with bowel movements and needs to be manually pushed back in. It's not a hemorrhoid, however it does become irritated and sore. It's also not likely to shrink spontaneously from what I have been told. My surgeon is reluctant... [ more ]
GraceB Hi also have a skin tag. I noticed it one year after my j-pouch surgery. My surgeon told me just leave it alone. Now it's been 8 years since surgery the skin tag is just a little larger but doesn't interfere with bowel movements. When I have pouchitis it seems to get a little larger. I am still not able to gain weight. There are just certain foods that I just can not eat. I spoke to nutritionist, she told me try other foods with baby steps. I have been trying to do that but than I always... [ more ]
Spooky Well I have an answer. Not a hemorrhoid or a skin tag, but a Hypertrophied anal papillae. Totally benign. My surgeon says normally he'd just snip it off, but I'm not an average patient and he doesn't want to risk infection close to the pouch, so we're going to leave it for now. Often they do reduce on their own, according to him, so we will leave it for now and just monitor. He did prescribe cortisone for week just to see if it helps, but otherwise nothing to do. You learn something new... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
J-pouch being created October 3rd!
NickPNickP
Pilot Debby I am sure that you will be fine! My intestines were in very bad shape I ended up having a perforated colon with many ulcers in my large intestines. As bad as my intestines were I got to have my j pouch about a year later in 1994. The things that stick out in my mind the most is to make sure once your j pouch is connected and things starting flowing through is to make sure you have a good barrier of paste around your rectum, because your but will burn if you do not. Do not go crazy on food no... [ more ]
valli Regarding ilex cream where is the best place to purchase it from. I looked it up and Walmart sells it for 21.99. Trying to locate it in Canada. But even 21.99 is expensive then add exchange on and its going to cost me $27-28 for a 2 once tube. Which I fear will not last me long since I am going up to 20 times a day. Thank you guys for the suggestion. [ more ]
valli ❤️
See all 11 replies...
J-Pouch ForumsHelp! Need advice now!
Depressed/Need Advice
N Nick10136
CTBarrister I was also shocked when I was told my colon had to go. But when it’s gotta go it’s gotta go. 26 years later, my only real regret is not having the surgery sooner than I did. Although I don’t have a perfect J pouch, I have a treatable form of chronic pouchitis or Crohn’s which is vastly preferable to the out of control ulcerative colitis that consumed my colon. The way I look at is I traded up or upgraded, if you will, in diseases. Quality of life is good and the last 26 years was vastly... [ more ]
skn69 Hi Nick, Yes, there is hope and yes, you have options...if your remaining colon has to go, then go it must but that does not mean an outside ileo for the rest of your life, just a very short period of time (and a lot of J pouchers adapted so well to the outside bag that they either choose to put off having the reconnect or don't have it done at all)...We do not know how we are going to react until we get there. Next, there are 2 or 3 possibilities in all...one is the Kock pouch (internal... [ more ]
duck11 Hi Nick, So sorry for what you are going through--we've all been there and it sucks. Depression is a pretty natural response, so do make sure you talk to your loved ones or a counsellor about it as it can easily overtake your life dealing with chronic illness. There is no shame asking for help to get through something so difficult. As for the medical stuff--I had a bag for over a year too. I had a three step surgery with all kinds of complications and it felt like it would never get done... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Older J-pouch Guy here
therealstingertherealstinger
GraceB I have had my j-pouch for 8 years. Surgery did not go well. Lost 35 lbs. have PSC, bronchioistis severe leg cramps, osteoporosis, I am a small woman to begin with. I am down to 94 lbs. Hard to digest food. Take a lot of vitamins. Prolia injection, At least 1x during week I take an oxycodone I take atovan at night to sleep and take Lomotil in morning also vsl#3 packet. I get depressed often I had asperated pneumonia this past winter. I feel like I am falling apart also. I have always been... [ more ]
drone3 I'm 37 and have had my j-pouch for 25yrs. Currently on Humira and MTX, I do worry about my long term health as my arthritis has progressively got worse over the last 4 years and subsequent fatigue has really slowed me down. If I don't get at least 7.5hrs sleep I'm an absolute train wreck. [ more ]
lablover My hubby is 59 and has had his pouch for close to 25 years. No other issues other than having to wear a brace on his knee, back issues (but he does weightlifting to try to stop that issue) and gets pouchitis 2 to 3 times a year. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Pat down at the airport
LesandiegoLesandiego
skn69 I travel a lot, and all around...I get patted down nearly every single time (underwire bras do that)...I couldn't care less...I get the x-rays and the 'puffers' too...I figure that if they take my x-ray then I am entitled to look at it and ask that they show them to me Once or twice I have refused to be patted down by specific people and have asked for someone else (a good looking guy?) but I always do it with a smile. Now I go through mostly in a wheelchair...I get bugged a bit less...but... [ more ]
danny Dud ❤️
Jan Dollar I have never have had issues with full body scanners. Sometimes I get randomly selected for explosives screening. As for the water bottle, I just bring an empty bottle and fill it after security. Jan [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Pressure
AngiebAngieb
Raj I havent tried metamucil, I just take pysillium husk raw. Also I take one probiotic a day just to help digestion. I find bananas , whole wheat breads , oats and potatoes to be best bulking food. For all my carbs I'll just have them. Also salads make me go more often . So you can see if its the fresh fruits or veggies in your diet thats causing gas and loose stools. [ more ]
Angieb Perfect thank you [ more ]
CTB23 I use Benefiber and I do well on it. I also like it because it has no sugar. My surgeon had told me when I started with it that it tends to cause less gas. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Partial blockage
M marypar
marypar We think he is still blocked because of the stool output not like it was before this happened three weeks ago. The images saw blockage, but he also has hiatal hernia and GERD which may be making it worse as his hernia is 5cm. He wants to continue the full liquid/clear diet for now but sporadic output is causing him the stress and anxiety. [ more ]
Scott F If he has no pain then why do you think he’s still blocked? A liquid diet will often yield a liquid output. Not going as much isn’t by itself a sign of a continuing blockage - it could just be that as stool gets more solid it moves more slowly. Is it possible that things are fine, but you’re both still worried and his diet is strange? [ more ]
marypar He also has output during the day wavering from 3 times to sometimes 8 times. Lots of brown liquids and some stool. No pain. [ more ]
See all 5 replies...
J-Pouch ForumsPouchitis
Manuka Honey
S Sherry24
Sherry24 Id say its a great accompaniment to antibiotics and everyone is different. Over time I need antibiotics again, but now they work much better alongside the honey. [ more ]
drone3 How are the Manuka Honey people doing, any negative effects? I don't have any sugar in my diet besides a bit of daily fruit (banana,kiwi, blueberry) Should I try it? [ more ]
StarryNight ❤️
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Bidet
B bwils
Scott F My Washlet remote is mounted on the wall. I almost never remove it from its mount. [ more ]
MChong I spoiled myself with the a Brondell SE600 heated/dryer unit from Costco. If i had to do this again I would not get a remote as I use the same hand to wipe and hold the contol. It is hard to empty in one go so i am switching between wiping and remote. Invariably your hand can get soiled with wiping. [ more ]
CeeeeCeeee Call me spoiled rotten! My bidet has a heated seat and hot/warm/cold water temp. settings. It doesn't have a dryer or remote but that is just fine with me. I've had the same bidet since my takedown in 2003. I won't let anyone else use that toilet! See, I said I was spoiled! [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
removal or disconnect?
GinLynGinLyn
Linda Reed My husband is now 18 days in the hospital. Trying to treat jpouch infection and abscess they caused, treated with vancomycin sent him into acute renal failure. Now we are trying to get his kidneys working again. It’s dialysis 3days a week till they start functioning right again. My advice is to get the colostomy and no jpouch. [ more ]
Linda Reed My husband still has a drain to remove infection due to jpouch left in. Surgery is scheduled for October and he has to be as healthy as possible. The disconnected pouch will cause trouble later.His was in 10 years. [ more ]
chiromancer I have basically the same. A tiny amount of intestine above the anus was left as well as the anus I get scoped every two years (I did have rectal cancer as well as UC). It takes a minute or so, no drugs. I did have a mucusectomy when the j pouch was done. I get a little mucus excebtion which is no problem. Theoretically I could get another pouch but that isn't going to happen with current medical methodology. I am satisfied with my end ileo. Also glad I didn't get the anus removed and sewn... [ more ]
See all 18 replies...
J-Pouch ForumsHelp! Need advice now!
Probiotics
MIKEEYMIKEEY
MIKEEY Thank you and God Bless [ more ]
jhills I am 16 years out with my Jpouch and had severe ulcerative colitis. I’ve tried several times to go off probiotics and can’t because I start bleeding inside. When I take too much probiotics I get diahera. If I eat any form of dairy I get bloating, gas and pain. My wonder drug is ProBio 5 by plexus. I bought it just to help a friend get started with this company and now am 3 years out taking it and can’t get off it! It has great anti-inflammatory and priobiitics properties in it. For my system... [ more ]
MIKEEY Scott because I have no colon and a j pouch I am so afraid of going off probiotics completely, the reason I was taking antibioticcs for so many years was to help with diarrhea hence started taking probiotics. I use to have many accidents during the night, my doctor right now is in Europe so unable to ask his advice. Can't take pepto bismal since taking coumadin. So afraid to stop completely?? Just wonder if anyone else has experienced this. [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Gastroenteritis / stomach flu
cbearcbear
Scott F This is probably normal recovery of a wounded interior. OTOH only you know how severe the pain is. Hopefully things will be going in the right direction - if things start to get worse then medical attention is likely warranted. Good luck! [ more ]
See 1 reply...
J-Pouch ForumsPouchitis
blood in stool
J JoVic
JoVic Yes, a couple of days ago. Doc said my actual pouch looks great but I have some inflammation and mild ulcerations in cuff even though it’s less than 1cm. Also strictuting. So this explains the bleeding. My symptoms have subsided but I just started on Canasa for a month so hopefully this gets the inflammation down. If not I’d like to try Anucort. [ more ]
AARON Did you have the pouchoscopy yet [ more ]
Aimc ❤️
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Strictures with JPouch Part 2
LaurieFLaurieF
LaurieF Thanks so much Jan. i go back to see doc on the 20th and will have a list of questions. I go to the bathroom normally 6 to 8 times in a 24 hr period anyway. And i just started miralax last week and just recently started eating more so ill be keeping track if i poop more. [ more ]
Jan Dollar Miralax is a laxative. An osmotic laxative. It draws water into the bowel, increasing volume and frequency. Imodium is an antidiarrheal. It slows the gut and aids in absorbtion of water. This in turn reduces volume and frequency. As you can see, Miralax and Imodium are opposite acting drugs. I suspect that your doctor wanted you to take Miralax to keep your output loose and flowing, because Imodium slowed your gut so much that stool was backing up due to strictures. You are better off... [ more ]
Bubba1028 Hum, I wonder if MIralax works differently on the system than immodim. I don’t know what I’d do without number Immodium. Had to stop it this week bc I was fearful I was getting an obstruction. My butt is so sore now that the liquids are going through and the butt burn is real! Anyhow, I’d guve your doc a call and let them know the Miralax alone isn’t cutting it. Maybe they can figure something out like you described where you rotate between the two? Was the Immodium contributing to the... [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Complications with j pouch
CL Colin Lissenden
Colin Lissenden Thanks very much. I've had the drain fitted now so hopefully it will clear up. I think I am about to be referred to a specialist in london to hopefully fix the pouch. I agree I would really like to remove the bag but too be honest I just want to feel a little more healthy and have some quality time with my young kids. If that's with a bag then so be it. Thanks again. [ more ]
duck11 Hi Colin, I had 4 abscesses-yes 4!- with the colectomy part of the surgery. After being on immune suppressive drugs, it isn't surprising. Each one had a drain that went from inside through a tube to an outside reservoir i "wore" that captured all the gross stuff. Between that and antibiotics they finally cleared up, and then they could focus on getting the unconnected j pouch in order. Infections are deadly and really need to be taken care of before the other healing can start. Maybe if they... [ more ]
Hermione Oops !! Sorry I have no idea how I managed to post that twice😕 [ more ]
See all 10 replies...
J-Pouch ForumsPouchitis
Canasa suppositories
L lrdo
JoVic How long have you all found it takes for Canasa to work in reducing the inflammation caused by a cuffitis flare? I just started a 30 day course. I had one day long episode of bleeding which actually stabilized on its own before the Canasa. My GI scoped me and found some mild cuff inflammation, stricture and a few very small, shallow ulcers. The rest of my pouch looked great. During my scope 2 years ago I also had some cuff inflammation. Damn colon is still haunting me and my cufff is less... [ more ]
DJ H I also was put back on Canasa Suppositories for rectal/anal issues. Along with my chronic moderate to severe pouchitis I also have rectal inflammation and some bleeding at times. I guess I'm just one big ball of inflammation it seems I had a mucosectomy when I had the pouch done so I wonder about using Canasa since I don't have a regular cuff (or"cuffitis proper") like some others do. I guess I have proctitis instead due to not having the mucosa. I also have some hemorrhoids going on. All... [ more ]
Jim S Just started Canasa 1000mg one per day a few days ago because of inflammation and ulcers in the j-pouch. No other pouchitis related meds. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Bone marrow donation
JA Joey A
Joey A Thank you. I'll keep you posted. [ more ]
Jan Dollar Good for you for wanting to help! The medical criteria is here: https://bethematch.org/support.../medical-guidelines/ Crohn’s would not disqualify you, but if a type of inflammatory arthritis is the reason for your hip replacements, that might be a disqualifier. The first thing to do is to go in for testing. If you are not a match, the point is moot. bone marrow retrieval is done on the iliac crest of the pelvic bone, which is not where your hip replacements were. They can also collect stem... [ more ]
Bubba1028 I can’t answer your questions but I think it’s so wonderful you’d consider helping this man. Have you registered to see if you’re a match? You can do that just by getting swabbed ( super easy process that you can mail in) and they can put you on file to see if you match anyone. Then, I’d you do match someone, then you’d meet with the doc and get your questions answered. My brothers brother in law, if you can figure that one out, was a match to a three people! That’s like unheard of. The... [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Blood in stool every now and then
BenBBenB
BenB It does sound like it could be food related considering it's comes and goes at random. I do like sausage rolls and ate a fair few that day. Since posting this question, it's stopped, not even a little on the tissue. I feel good, no symptoms at all so I think ill just keep an eye on it for now [ more ]
duck11 Interesting-I'd actually say the complete opposite that blood isn't unusual. Do you notice it in particular with any types of food-esp. Insoluable fiber? I find if I eat too much insoluable fiber it irritates the pouch and bleeds a tiny bit. Sometimes the rectal cuff can get inflamed. I wouldn't worry too much if you don't have other symptoms but if you are uncomfortable with the idea of unexplained blood, best to ask your doctor. I think I had blood for up to a year off and on after my... [ more ]
AARON Definitely get a pouchoscopy for this [ more ]
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
Probiotic
amosamos
Raj I take sporolac powder sometimes when I have to go out . Expect that I just take lactifiber 2tsp daily. Though I have VSL3# too but I dont really see anything extra for those extra bucks it costs me so i've stopped buying anymore of it. [ more ]
Bubba1028 I think you’ll hear mixed reviews. I think most agree Vsl3 is the best but it’s super expensive and some insurances don’t cover it (most of them!). Some docs recommend certain ones, other docs say anything is fine. One of my docs suggested Floristor and that’s worked well for me. My dads doc suggested Citrucel or something like that bc it has a certain number of microbes. If you do some research online you’ll find a suggested number that you’re supposed to hit- like 10 billion or something... [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
HUGE HERNIAS AND J POUCH REPAIRS
tireonemiketireonemike
Jan Dollar This is a tough one. Just having these hernias, it is not a reason to not consider a j-pouch. Losing some weight helps reduce complication risks, including more incisional hernias later on. Since you are quite concerned, a second opinion may be your best bet before going forward with any plan. Hopefully, your sphincters are in good shape after not being used since 2012. That can have an impact on the success of j-pouch surgery. If you have already had the j-pouch surgery and are simply... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Frequent Blood in Stool - Low Iron
S samlc25
drone3 Hi Sam, I had a few years were I had several haemorrhages with bleeding. The only way I could stop the bleeding was to cut out all sugar products, I even cut out fruit. That was 10 years ago and I have now added in a bit of fruit but for me it was the sugar that was the main culprit. [ more ]
samlc25 Thanks. Will do! [ more ]
AARON Good luck! Let us know what happens. I just don’t know what else it could be. But I hope it’s not Crohns. [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Canasa = sulfa drug?
W ween
Scott F The biggest downside of any drug is always much worse than the likely result. I don’t like the side-effect profile of steroids, and tissue thinning is a bigger deal than you might expect. If it were my body I’d price mesalamine enemas (probably cheaper than Canasa) before settling on Anucort. As far as deductibles go, if you are sure to meet your deductible by the end of the year then there’s no financial benefit to delaying it, or agonizing over it, since it will be spent. In my case my... [ more ]
JoVic Thanks Scott. I'll see how things go with the Canasa. So expensive though! Originally was going to be $623 for 30 day supply since I've been lucky enough not to hit my deductible yet. Got it down to $377 with the Canasa coupon card from the manufacturer. In general I've had better results for my flares overall with topical steroids. Is it true than Anucort is much less pricey? I may want to switch. Both seem safe for long term use so if Anucort works and it's way less money I figure why not. [ more ]
Scott F Canasa (mesalamine) has a better side effect profile than steroids, so it’s generally a better first choice, especially if it may be needed for an extended period. Cuffitis doesn’t afflict most people with J-pouches, but it’s not rare. Some people get great results from treatment, and others not so much. Like UC cuffitis can come and go or persist, and the treatment needs to be matched to the condition as it behaves. [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Severe bleeding
LalafiedLalafied
jeane I have uulcers in pouch and experience pouchitis without bleeding. Cuffitis and fissures always bring be bleeding. I am sorry you are experiencing this. You may need longer treatment to heal Ulcers if I’m pouch. The typical pouchitis treatments will curb symptoms but ulcers may still be active in pouch. You may want to ask doctor about entecort or cortifoam enemas to see his/her opinion also ask about vsl2 probiotic. Insurance may cover it. [ more ]
AARON What colour is the blood? Darker is worse. When i was diagnosed with crohns I would empty the pouch and then dark red blood would appea on top with mucus. Every time. [ more ]
Lalafied Thank you. Yes he did a scope and found that I do have pouchitis, however, is not convinced that's where the bleeding is coming from because medication got rid of the symptoms of the pouchitis. Frequent bathroom trips with water stool and urgency were gone, bleeding continued. With severe pouchitis or chrons is the bleeding, or can it be insanely heavy with clotting, do you know? [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Toilet Splash Spots Creating Huge Tensions
NYC GooglerNYC Googler
NYC Googler True that. [ more ]
JLH hey guys I didn’t say I bought it! I just said I fell in love with it. Check it out it’s really cool technology. Maybe we should put our collective brains together and design one but only allow people with our conditions to buy it. Unfortunately, the price would be higher than the Kohler toilet. Alas, no justice in this world. [ more ]
Mysticobra When it gets stained beyond cleaning. Buy a new one. Toilets are relatively cheap and easy to install. 4k for a toilet? I saw those. Completely ridiculous. Unless you are ceo of Amazon or Facebook or any billion dollar company. That's pocket change to them. We gotta stick to the 100$ toilet. Lol. [ more ]
See all 60 replies...
J-Pouch ForumsGeneral Discussion
Possible obstruction
B Bubba1028
maddie18 Wishing you all the best! Good luck !!! [ more ]
Jfill21 Can’t imagine going through that plus being pregnant. Hoping for the best! [ more ]
Bubba1028 Doc said it’s possible adhesions stretching from the growing baby, or it could be a kink or partial block that’s working it’s way through. I’m feeling a lot better today which is reassuring. My GI suggested I see my surgeon to touch base anyway and they were able to get me in today. She thinks a possible obstruction. Liquids today and if I’m still feeling better tomorrow, introduce food. Stay away from Imodium for now. If it gets worse, go to the ER for pain management and fluids. They can’t... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Abdominal Pains/discomfort
CC Charlie cbnice@verizon.net
Charlie cbnice@verizon.net Hi Scott, Was this your first bout with SIBO and did its symptoms involve your hole belly? How were you tested? How long did you have it and what meds were you treated with? How long were you treated before feeliing better? Thanks, Charlie [ more ]
Scott F SIBO can can excess gas production, sometimes lots of it. Gas stretches the small intestine and can hurt like heck. I don’t know how much gas you’re producing, but when I was diagnosed with SIBO I had become a gas production facility, and that was the key diagnostic symptom. [ more ]
Charlie cbnice@verizon.net I went to my general physician today regarding said issues. Since my surgeon is 6 1/2 hours away ( Cleveland Clinic), I will call him and see what his thoughts are and go from there. I’ve heard of SIBO. What do you know about it? It’s my understand that it’s a bacterial overgrown of the small intestines. I’m not sure if it would produce my painful abdomen symptoms. It kept me up all night! PS: As I’m messaging you, my X-ray results just came back “normal.” This is so puzzling! Thanks again! [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
J-pouch and Prostate cancer
Duane WellsDuane Wells
lablover Excellent news! [ more ]
Paul Steve, We take Paul this week to the Mayo Clinic. We will let you know how it goes. The doctor’s name Dr. Erik Castle and he is at the Mayo Clinic in Scottsdale, AZ. We’ll let you know! Debby [ more ]
SMD Hi Paul, thank you for posting this info. Glad you have a surgeon to talk to familiar with prostatectomy and Jpouch. I had a colectomy in 2001 and living with a Jpouch since. Diagnosed in 2015 with prostate cancer and have been on active surveillance since. PSA has been steadily increasing but nothing drastic. Last prostate biopsy was 4, Gleason 6's and one 7(3+4). My urologist isn't overly alarmed given the slow rate of growth. He arranged for a consult with a radiation oncologist and her... [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
Possible obstruction while pregnant
B Bubba1028
lablover also try heat on your stomach. sending cyberhugs. [ more ]
Bubba1028 thanks for the advice. I’m now 14 weeks and woke up with a severe stomach ache. Have been staying with liquids most of the day and laying down seems to help. Some sharp painsthat come and go, like the last time I had an obstruction. I’m nervous it’s the same thing again. I’m managing it at home and took Tylenol. I’m not thirsty or hungry. Got sick once this am but I think that’s morning sickness from the pregnancy since it still happens almost daily. I wish I could do more to make things... [ more ]
LC I was horribly sick until almost 20 weeks so I know what you mean about feeling like crap. If you need medication to function, ask for it. I was on three different nausea medications for months and I was still sick multiple times per day. My pouch was actually better than it had ever been while I was pregnant probably because I hardly ate anything for months, everything slowed down, increased blood flow, and the natural immune suppression. Your OB can tell you more about diet, but I don't... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Jpouch
AngiebAngieb
Angieb Yes I take Psyllium husk after every meal. [ more ]
Scott F Angie, it’s possible that probiotics will help, but they wouldn’t be my first choice. On the other hand, it’s easy and safe to try. At four months in pouchitis is possible but probably not the most common cause of leakage. Have you tried psyllium (or other soluble fiber)? [ more ]
Aimc ❤️
See all 13 replies...
J-Pouch ForumsGeneral Discussion
Toilets-- Comfort height problems? Seat comfort?
coloneliuscolonelius
Scott F I think “comfort height” is a ridiculous name for those tall toilets. They do help people who have trouble getting up from a low seat, though. The Squatty Potty should fix any height-related problems, though. Why don’t you buy yourself a toilet seat that’s more to your liking? Even in an apartment you could swap that out, though the toilet itself isn’t so easy to swap. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Why is it that most J pouchers cannot fart safely ........
VeggiescottVeggiescott
lablover My husband can fart...LOL I think he has gotten better throughout the years... [ more ]
SMD i agree with the previous post. It all boils down to diet. Depending on what I eat I can easily pass gas and when I do, I smile as if I had an orgasm. It's such a rush, and I'm like wow, how did that just happen? Always of course when I'm alone. I had my two part surgery in 2001. I used to live on Metamucil, but stopped it when I switched over to a whole food plant based diet 3 years ago. More fiber than I ever need. [ more ]
CTBarrister I don’t have problems passing gas when my pouchitis is under control, so I don’t agree with the premise of this thread. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Loperamide
T TCM
TE Marie I'm glad I have 6 or 7 bottles of the 200. If it goes much higher I will go back to using the prescription loperamide. My insurance quit covering it and I think it was going to cost me around $120 for 270. The prescription is better for me as it's a capsule vs the little green pill. You would think that cost should factor into insurance coverage. I'm pretty sure once they stop covering something it doesn't start back up. But.... if it was reclassified it as an opioid, since that is why they... [ more ]
TCM Agree. I stocked up before getting the Lomotil prescription. The price was sky high. I think someone is gouging us. I may have to get out our antique voodoo doll and insert a few needles with that person in mind. [ more ]
CTB23 I just checked Amazon. I believe it was about 90.00 for a 200 ct. bottle that used to sell for about 2.75 at Costco before all this craziness! [ more ]
See all 14 replies...
J-Pouch ForumsHelp! Need advice now!
Enormous amounts of gas for days
T tulsamom
tulsamom Thanks. I didn't think of that. [ more ]
Scott F You may have just picked up a virus, which will clear up on its own. If it persists you could have something harder to get rid of, like C. Diff. I hope it goes away soon! [ more ]
tulsamom I'm also in really bad pain right inside the anal area. So if anyone could advise, that would really be helpful. I'm on liquids now because of the fear of more pain. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Picking a surgeon
C colitisresearch
bvollbre Will do, and you too! [ more ]
colitisresearch Yes, UCSF is great. Keep us all posted on your progress! [ more ]
bvollbre Good to know, maybe there is some hope for me getting it done in 2 steps after all, depending on the state of the tissue. Maybe I'll give their office a call if I don't get a message back on MyChart in a couple of days. Thanks Shannon, hope the rest of your recovery goes well! I'm scheduled for Step 1 the week after Thanksgiving, so have plenty of time to mentally prepare and do my research, but it's good to know that I'll be in good hands at UCSF. [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Fissure/tear during stricture surgery
J JulieT
JulieT Winterberry, Thank you for your great suggestions! I've been taking sitz baths and using Rectacare cream, which helps with the pain. I've never heard of Zincofax, but I'll be picking some up! [ more ]
JulieT Hi Jeane, I'm sorry to hear you're battling a stricture. They can be miserable. I had a dilation surgery to open up two strictures--one at the inlet of the j-pouch, and another at the outlet of the pouch. No, there was no talk about a fissure being a possible risk. [ more ]
Winterberry JulieT, try using a sitz basin to help heal your fissures and injured tissues. It will also soothe pain. You can find a sitz basin at health equipment stores, large drugstores, or at Amazon for around $12. Put it on the toilet (seat up), fill it with very warm water and sit in it until water cools. Warm water will bring blood flow to that area and help heal fissures and injuries, inside and out. Dry thoroughly, using a hair dryer set on cool if necessary, and apply a light layer of cream. [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Ulcers in my J Pouch
HC Happy Cakes
Happy Cakes Thank you everyone for your thoughts! [ more ]
jeane I have ulcers in my jpouch all the time w no Crohns diagnosis. As CTbarrister indicated, they refer to it as inflammation. If you are feeling that ill they should be able to prescribe a medication to help. [ more ]
CTBarrister What I said was my doctor told me he writes something down on a paper so he can get the medication I need. He DOES NOT KNOW my diagnosis nor did my prior GI and they are/were two of the best J Pouch specialists in CT and NY (my prior GI trained with Dr. Shen at Cleveland Clinic who is the best J Pouch doctor in the USA). Period. That is called a fiction and arbitrariness. But I also understand it because he has a duty of loyalty to his patient to get the patient the best treatment possible... [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
Trouble emptying pouch and Anal fissures?
J moonsJ moons
drone3 Annal fissure is crazy painful. Eventually managed to get out of it by taking Cipro. although i paid the cost with damaged tendons throughout my body. [ more ]
JesseP22 I have very similar issues with not much relief. I have trouble emptying gas or stool and am just uncomfortable all day. You mentioned your sphincter muscles are tight. I think I have the same problem but my doctors haven’t brought that up. Wondering how you’re doing recently [ more ]
J moons I've had success with Botox but would have more issues with accidents at night or any time I tried to workout or play sports. [ more ]
See all 7 replies...

Join Us!

Founder, Creative Director & Web Master

William J. Johnson
bjohnson@j-pouch.org

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.

Forum moderator and advisor
Jan Dollar R.N.

 

 

 

 

General Disclaimer

 

This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.


Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).

Confidentiality

Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.

 

CCFA

The Crohn's & Colitis Foundation of America,
Philadelphia, Delaware Valley chapter, is located at
521 Bustleton Pike, Feasterville, PA, 19053.
Tel: 215-396-9100


National CCFA headquarters are at,
396 Park Avenue South, 17th floor
New York, New York 10016-8804
Tel: 212-685-3440    800-343-3637

 

Join Now

Already a member? Sign In

Online Now

Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×