Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsGeneral Discussion
Ilex Skin Paste
A AL77
r39530 Ilex was recommended to me by the nurses at Cleveland Clinic back in 2002 when I had my J-pouch surgery, and I used it for 20 years. I agree that nothing works as well as Ilex, but since it disappeared from the market I have tried at least a dozen different alternatives. The best I have found is Medline 'Remedy' Silicon cream. It has 12.5% dimethicone where most others only have 2%-5%. I believe this is what makes it a a more effective moisture barrier than other creams (not as good as Ilex,... [ more ]
AL77 That stinks, there is nothing even close to that paste. It got rid of butt burn completely and sealed in the leakage very well too. What product do you use now? [ more ]
Pouchomarx NOBODY REALLY KNOWS... it sucks cuz thats only product that dries for the most part and was using it for 15 years now. surprised the site is still active and emails are not bounced back which gives some hope.. was told they had ingredient issues after covid but then heard someone bought them and were possibly going to revamp production again but that was months ago. theres a guy on the FB group in Europe who lives by their plant and he said nobody has been there for a long time and no cars... [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Bactrim
Mema 1Mema 1
Jan Dollar By the way, you can buy bottles of loperamide OTC on Amazon, but I am not sure I would trust them. They are sourced from China and it is not clear what is in them. Jan [ more ]
Jan Dollar No, I just reduced my dosage gradually over the nearly 30 years with a j-pouch. I take a “holiday” from it from time to time to see if it really makes a difference for me. Turns out I still need it. Jan [ more ]
Mema 1 Thanks, Jan, I'll get some and try it very soon. Do you only take 4 because of the Remicade? [ more ]
See all 20 replies...
J-Pouch ForumsGeneral Discussion
Total gastrectomy or wait
Len78Len78
Jan Dollar Gee Len, this is a really tough call. I am sure you have been told numerous times that only you can decide what risks you are willing to live with. I presume your doc has laid out all the potential scenarios and their pitfalls. There really are no “great” choices, I think. FAP is a real dilemma. My opinion does not mean much, because I am not living with FAP. But, if I was I probably would get a second opinion and likely go with the gastrectomy, since it seems like it is in the future... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Pouchoscopy prep question
B Bubbapup
Dahlia @Bubbapup Hi I've had yearly pouchoscopy 's with sedation. Prep is liquid diet in afternoon, tap water enema in pm and 2hours before procedure. My previous surgeon said the preps for people with colons are risky with dehydration in jpouch patients. And always request a pediatric scope! I always request IV fluids to limit dehydration once IV is in. Good luck! [ more ]
Bubbapup I get mine every 5 years or unless I am having symptoms and they need to take a peek. I feel like the only good part is the sedation! Lol [ more ]
Jan Dollar I don’t think I am tough at all, but my pouchoscopies are nothing like a colonoscopy. I have been getting them without sedation since 1995 without issue. Definitely more comfortable since I have been in pouchitis remission. Anyway, I get mine about every 3 years or so. My biopsies have always been negative for dysplasia. Enjoy your Thanksgiving everyone. Jan [ more ]
See all 17 replies...
J-Pouch ForumsGeneral Discussion
Stelara for chronic pouchitis
D Dahlia
Dahlia Thank you both for replying. I did not take premeds before treatment but have decided to discontinue stelara due to this immune response. It did work wonderfully for the first 6months though. Back to cipro Flagyl sulfasalazine cocktails 🍸. [ more ]
Jan Dollar On the Stellara website they do mention both joint pain and fever as a side effect, along with a long list of others. Do you take premeds before your treatment? Perhaps taking some Tylenol and an antihistamine before your injection may help (if you don’t already do this). Since your reaction symptoms are a little delayed, perhaps they are less of a concern. But, they definitely seem related to me. But, like Scott said, it is up to you whether it is a reasonable trade off. Jan [ more ]
Scott F Joint pain is on the list of potential side effects, but fever isn’t specifically mentioned. If it’s happened every time it seems unreasonable to presume that it isn’t related. If it isn’t getting worse each time, as a delayed “allergic” reaction might, then you get to ask yourself if the discomfort is worth the benefit. There are other biologic options available, but with no guarantees they’ll work as well or have a better set of side effects. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Pain Chest, Sides
JE Joe Evans
Jan Dollar Makes sense to have some screening tests done. At 76, osteoarthritis is a likely culprit. However, it is possible to have both osteo and enteropathic arthritis. I am one of those people. Your symptoms are not typical of enteropathic arthritis, but it is not uncommon for it to manifest a decade or more after colectomy. That said, it can mimic all sorts of things. Your primary doctor or ortho can order screening tests as a starting point before seeing a rheumatologist. Jan [ more ]
Scott F Some blood testing sounds like a good idea. You might ask them to check your Vitamin D as well - I had lots of vague-but-significant pains when that was low. It sounds premature to involve a rheumatologist, unless there’s more to the story. [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Are beeswax capsules safe with pouchitis?
CK Chris KCMO
Chris KCMO I'm taking the same OregaBiotic product mentioned at the top of this post, which so far hasn't seemed to present any digestion problems. I'm going to stop taking it one week from today. I'm tempted to purchase the Visbiome product as a follow-up, as many do seem to recommend introducing helpful bacteria, though I'm leaning towards not introducing any additional just yet and instead seeing how things progress, so as to reduce the number of factors in my "experiment". If I do end up having... [ more ]
Sara Marie Thank you for the update! Which oregano oil are you taking? Are you still doing the beeswax one? I'm so glad you are feeling better! How long until your month is up? Are you planning to follow up your oregano oil regimen with some probiotics? I think I read that oregano oil can kill off some of the beneficial intestinal flora like antibiotics do. [ more ]
Sara Marie ❤️
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Oregano Oil.
V van
Chris KCMO Cross-posting a status update: https://www.j-pouch.org/topic/...9#728953969407754529 [ more ]
Sara Marie Oh I forgot to say that Jini Patel, who wrote "Listen to Your Gut," took oregano oil for a year. And yeah, this experimenting can be expensive. I hope to find some things that work and hopefully they won't be the most expensive. I'm not wealthy and it looks like the gap between the poor and rich will probably keep on widening in the US, where I live. [ more ]
RondaC ❤️
See all 9 replies...
J-Pouch ForumsPouchitis
Undigested Food
MY Mark Y.
lclassen ❤️
Scott F If Flagyl and Cipro no longer work then it’s probably time to try some new possibilities. Rifaximin is well worth a try, as long as you can get insurance to cover it. Other antibiotics that can work include Augmentin and a few others. Some folks also get help (mainly preventing/delaying bouts of pouchitis) from Visbiome or VSL #3, but those are also expensive if the doses are adequate. [ more ]
Sara Marie I have noticed that when I got the pouch there was a gradual but constant reduction in the ability of my guts to digest various foods. I didn't discover psyllium husk powder, which helped slow the transit time, until about 18 years in. Before that, the stool pretty much always had the chewed food look. The slower transit gave my intestine a longer time to absorb nutrients and the food would come out generally more processed. I added digestive enzymes and now the food is even less... [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
J pouch and Whipple Surgery
A Anv95
Ed55 I am 70 too and, like your father, had J pouch surgery many decades ago. I have had several surgeries for kidney stones and after each surgery I suffered an ileus. The doctors told me to increase my hydration but trying to increase hydration without a colon is very hard to do. I chose to have IV saline infusions rather than drinking water that went right through me. Infusions can be combined with blood work to balance electolytes, add minerals, etc. to the saline. As for the gas, I laid on... [ more ]
Anv95 Thanks you all for the advice, its been helpful! I've been really stressed seeing him like this. He has been walking a bit more, he isn't able to drink fluids due to having an NG tube. He passed some fluid but not quite a full BM yet. So thats a step in the right direction. [ more ]
Jan Dollar Some people swear by chewing gum to get the gut stimulated after surgery. There is some science to it, but study data has been conflicting. The good news is that eventually everyone’s gut wakes up. The bad news is that there is a very wide range of that time table. Jan [ more ]
See all 5 replies...
J-Pouch ForumsK-Pouch Korner
removal of gallbladder years after having K-pouch
L lcolche
Shavon Just in case someone is looking for updated information on this topic. I had my gallbladder removed at Northwestern in Chicago by Dr Teitelbaum. He consulted with Dr Strong who used to work at Cleveland Clinic with Dr Dietz. It was laparoscopic and I didn’t have any issues. [ more ]
jan15 That makes sense. Thanks for explaining. Be well and peace [ more ]
Kim S I’m don’t think Dr. Dietz can be officially listed at Langone until he completes the credentialing process that dr’s go through when they move to hospitals in another state. Based on Facebook comments, it should happen in October and folks who have been in the queue are getting ready to schedule appointments as soon as they open up. He has already communicated his scheduler’s name and contact info to existing patients. [ more ]
See all 23 replies...
J-Pouch ForumsHelp! Need advice now!
J-Pouch issues after Gallbladder Removal
GoentropoGoentropo
skn69 I had emergency gallbladder surgery about 8yrs ago...not because I hadn't had signs but because no one wanted to touch it and especially during other surgeries due to cross-contamination. Nothing showed on the scans but during laparoscopic surgery, they discovered 1 huge stone and about a quart of black pus...it took hours to get rid of it. After the first week of discomfort due to the obvious distress my body was in, things settled down. I eat normally and have normal pouch function (k... [ more ]
Scott F @Nikki Nicole — If the MMT is slowing things down too much, it might be worth trying psyllium to normalize the stool consistency. Make sure to drink plenty of water throughout the day. If you can’t get that to work then a *modest* dose of MiraLax might help. [ more ]
Nikki Nicole If I have a jpouch already & now no gallbladder what can I take to be more stable with having bowel movements with me being on MMT Methadone Maintenance Treatment for pain . What can I take for this please someone help something that will keep my bowels moving easy & consistently. Also anything I can take so I can digest fats bc they constipate me but I’m trying to gain weight back too . Please help 🙏🏼😔😞 [ more ]
See all 13 replies...
J-Pouch ForumsHelp! Need advice now!
Facing surgery, have questions!
TheRealBrettTravisTheRealBrettTravis
Deb C Have you tried an enema then using a catheter to see if you can get more complete emptying? [ more ]
Doug K Hi - sorry you are suffering so badly. So the problem seems to be that you are having trouble emptying the pouch fully, and getting backed up and it’s causing acid reflux and an overall feeling of illness. That sounds hellish. The doctors don’t really know exactly what is causing your inability to empty, but that inability to empty is what is causing your reflux (potentially). The doctors are recommending to give you an end ileostomy to get you feeling better, but they don’t have a pinpoint... [ more ]
Jan Dollar This is a tough one. Sure, there are other options, like a pouch redo. Not many surgeons have experience with it. Plus, with a Crohn’s diagnosis, you cannot really risk losing even more small intestine if the second pouch fails. With Crohn’s, preserving your small intestine is a priority, because you are at a higher risk for future bowel resections. You’ve been on lots of different meds, so I don’t know what you have not tried. Still, I do not blame you for wanting to be sure that permanent... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Dr. Ashburn vs. Dr. Dietz
S scallop
Pouchomarx Dr Dietz was at Cleveland Clinic and then with University Hospital in Cleveland. When Dr Remzi left cleceland he said if i ever needed a colorectal surgeon he would only recommend Dr Dietz. Well Dietz has now left Cleveland and is at NYU Langone in NYC. Remzi left Langone and went to Northwell. I also had Dr Shen as my GI in cleveland and they have all left me and it sucks as they are all best in their field for jpouches [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Best surgeon for removing complicated j-pouch
S scallop
Pouchomarx Dr Remzi is the best jpouch surgeon in NYC. He handles the very most difficult jpouch surgeries in the world. I am sure he would be capable to remove it. Hes at Northwell [ more ]
scallop Hi Woodstock69 Thank you very much for the recommendation. I hope you don't mind if I ask a few questions: What led you and your son to have your pouches removed? Was the surgery complicated? How was the recovery? How is life with the ostomy? I had my pouch initially done in 1998 and then redone by Dr. Fazio at CCF in Cleveland in 2001. It has never worked well but now it works very poorly - I have to catheterize and irrigate 4x/day in addition to other bathroom trips in between. Because the... [ more ]
woodstock69 Dr Eric Weiss at CC Florida removed mine, he is the most experienced , he also removed my son's [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Exercises
LyssicoleLyssicole
New577 Yes they can order PT to help the pelvic floor. i never did the therapy due to wait list constraints. however, my pelvic floor did recover on its own after about 9 months. i also take Imodium 3x daily to slow things down. and it works for me most of the time. [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Post-Reversal Pain
LyssicoleLyssicole
Ljz Good luck! Hope the treatment has helped your soreness and pressure and that going forward your j pouch works wonderfully! It does take time so I will you patience as you heal! [ more ]
Lyssicole Thank you everyone for your help. My colorectal surgeon took a look down there and discovered multiple fissures (and hemorrhoids). I am now waiting for a procedure to help them heal, cauterization and Botox for the muscle. No wonder I had pain other than the burning and itching! Not sure how this happened as I don’t strain a ton. Must be just from the trauma in general and excessive BMs. [ more ]
Sam79 Hey lyssicole I had the same diet right after reversal. It takes time for your system to adjust. I went 2 weeks on liquids then 2 two weeks on solid liquids before I could have real food. Has your Dr told you to take imodium to help slow things down? That will help alot right now. Things will get better, your doing what you can for the burn just give it time. [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
off antibiotics for 3 weeks with oregano oil
C clouseau
Sara Marie I have taken Giam Oil of Oregano capsules for minor infections and it seems to clear them up. I have taken as many as 2 a day before. I don't take it long term because of its blood-thinning effects. The ingredients are vague: Oregano Leaf Supercritical CO2 extract 230mg, Carvacol & Thymol 32mg. I don't know if it adheres to the above qualifications because there is so little information, but I do know it has helped clear up minor infections. I have also found that oregano oil is great... [ more ]
Jmakled Do you put the oregano oil drops alone in the capsule and take it? Or do you put something in the capsule with the oregano oil? I am about to start my trial with oregano oil. I bought the little brown 15ml bottle of doTerra off Amazon. I cannot take the cipro anymore. It’s destroying my tendons, and as soon as I stop, my pouchitis flares up again really bad. [ more ]
Bloesch88 ❤️
See all 66 replies...
J-Pouch ForumsGeneral Discussion
Constipation or Partial Blockage?
I itaintraito
itaintraito Hi @SeattleJane . I'm sorry to hear you're in what sounds like a boat similar to mine. It hasn't been fun for me so I can only imagine what three months of it has been like for you. I'm doing about the same as last time I posted but have stopped skipping dinner; I can't imagine that was doing me any favors. I also still couldn't really help but take MiraLax out of what I guess must be an abundance of caution. Tripling water intake sounds like a reasonable idea. I've started to think water... [ more ]
SeattleJane Hi, @itaintraito - 18 years ago I had a colon resection and jpouch surgery to remove most of my large intestine due to polyposis (not FAP, just 40+ polyps discovered at my first colonoscopy, go figure). After 16 years of managing diarrhea, for these past 3 months I have been managing constipation. It's quite the unexpected change. I drink Miralax daily, use an enema as needed, sometimes take senna or dulcolax, and probably most importantly, have tripled my water and liquid intake. I have... [ more ]
Sara Marie ❤️
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Entyvio or any med
chili123chili123
Pouchomarx i have had a pouch in 2008 with alot of structural issues and then a Remzi redo in 2015. I deal with minor leakage from time to time since my redo which Remzi stated redo with mucousectomy is a 50% chance of having some leakage. but for the past several years i have had 2 small ulcers in mid pouch that just havent cleared with antibiotics but not really causing any issues. I am still with cleveland clinic and my GI has not talked about biologics at all. I dont want to go on them unless... [ more ]
Jan Dollar I have been dealing with UC since 1972. The concept of “no meds” has been pretty much of a fantasy for me. Maybe some folks can control some symptoms with diet and lifestyle, but my experience is that does not work in the long run. I started out with pancolitis when I was 15 years old and eventually had nearly 2 decades of remission with only an occasional flare and intermittent medication treatment. Then it all blew up and I wound up with a j-pouch. I had another run of some med free years... [ more ]
Scott F You really ought to manage that inflammation, if you can. Diet alone probably won’t be adequate. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Pouchoscopy.
RenReevesRenReeves
SeattleJane @RenReeves I am sorry I can't help with any reasons why you would be experiencing back pain after a pouchoscopy, that's a new one and I'm sorry you are going through that. But as to the drug reaction, it would be helpful to send a note to your doc's office about your reaction and/or to tell the anesthesiologist before your next scope so she or he can adjust the dose or try a different drug. As for PTSD reactions - you have my sympathy. I was initially so terrified of the first few... [ more ]
Jaypea I'm sorry you have such bad PTSD. I had a pouchoscopy last year and needed no sedation. It is not comfortable but compared to what I have been through absolutely tolerable for the brief time they are having a look. Like you said it only takes a few minutes. I breath through it, say "ouch that's uncomfortable" when they inflate the pouch and by then it is usually done. Unfortunately anything used for sedation has side effects that generally last a while. Plain propofol wears off extremely... [ more ]
ytcrockpot I take nothing for my pouchoscopy. The very first time after my surgery 40+ yrs ago they gave me some type of anesthesia. But after that nothing. I’m in and out in less than an hour. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Excessive gas,bloating
K kentuckyboy
Sara Marie Hey @ nocolonstillrollingbb , Can you tell me more about "Heather's Tummy Tamers"? They have a lot of products. Which ones do you take? Also what do they help with and how often do you take them? Thanks! [ more ]
nocolonstillrollingbb I had AWFUL gas for the first 4 months. I think I have a post about it lmao. I'm talking about 100+ 2-5 second long farts a DAY. Low dose probiotics, a low fiber diet, and 2 pills 2x daily of heather's tummy tamers, 2x beano with every meal, and 1 extra strength gas x with every meal, have solved most of it for me! It took a LOT of trial and error. Here were the list of things that I tried before I figured out what worked for me: - Blood work - Pouchoscopy - Low FODMAP (didn't work for me) -... [ more ]
Sara Marie ❤️
See all 8 replies...
J-Pouch ForumsGeneral Discussion
J-Pouch Sleep Difficulties Group
G 97Guy
lclassen ❤️
97Guy That works better! [ more ]
Jan Dollar May I suggest that folks PM you with their WhatsApp number? Public posting of info like that invites spam (or worse). To send a private message just click on a member’s screen name to get to their page. On the right there is a list of options, including “Start private message.” Just click on that and you can converse privately. Thanks! Jan [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
IgG supplement for gut health?
SM Sara Marie
Jan Dollar Yes, Sara, that is my interpretation. If there was something very clearly beneficial, it would be big news. Most of what I read indicated it as helpful in some cases of C. difficile. Most pouchitis cases are not C. diff infections (thankfully). Jan [ more ]
Sara Marie Thanks, Jan. I hope so too! Guess it's nothing to write home about or we would have heard more by now. [ more ]
Jan Dollar I have never heard of IgG for gut health, so I had to look it up. Usually, IgG is given IV or subcutaneously. But, in this instance, it is an oral supplement. Even though it has been around for years, it does not seem that there are clear indications of efficacy. I am not sure how it survives digestion. Like probiotics, perhaps it is a mixed bag. Hopefully, someone with some personal experience comes along. Jan [ more ]
See all 4 replies...
J-Pouch ForumsMen's Health
Prostate Cancer Found in My J-Pouch!
J Jfill21
JimJimJimJim For anyone with a jay pouch who finds themselves with Prostate Cancer. I had a J-pouch fitted in 1995. In 2014 I was diagnosed with a large aggressive Prostate Cancer. It completely filled the right side of my prostate. It had also grown into the left side. It had also grown outside my prostate in two places, including up and around my Seminal vesicles. I had radiation and hormone therapy. 27 years after my J-pouch operation, and 10 years after my prostate cancer diagnosis, at age 79, my PSA... [ more ]
Jfill21 Just an update—I had the pouch excision/Barbie butt/permanent end ileo surgery two weeks ago. The procedure was performed at CC Main Campus; we live in Virginia. I have three words—“I am happy.” The surgery was a beast as everyone who has experienced it will attest. I went in strong and healthy, with the exception of the known presence of prostate cancer in my pouch. I was told afterwards that I had had very few hiccups given the complexities and opportunities for set-backs. I lost a liter... [ more ]
Jfill21 The saga continues--pouch excision surgery is in 5 days. I was in Cleveland yesterday for the pre-ops. I met with my surgeon, the stoma nurses, had an MRI and labs. I was told that my case was brought before the tumor board twice, plus consultations with pathologists and radiation oncology on the best way to move forward. Fortunately, the cancer was found on the backside of my pouch. Had it been on the front, next to my bladder, the surgeon was going to recommend removing it as well. That... [ more ]
See all 11 replies...
J-Pouch ForumsHelp! Need advice now!
Constipation over a month
S shoflo
SeattleJane @shoflo Hi - this thread is over 5 years old, so I don't know if you are still on the site, but hopefully you still receive forum notifications. May I ask if you had the manometry test, and also ask if your problem with constipation resolved and if so, how? I have been struggling with constipation for months and just today received a message that my G/I doc will be referring me for a manometry test. I hope you are doing well! [ more ]
Raj I got once constipated post takedown when I consulted my surgeon to add imodium daily to restrict bms. For the first day it was good but the next day I was badly constipated. Nothing moved out and the pain was killing. I pushed so hard that a little blood came along with a little stool. What I found from that incident is I cant take more than 1 imodium a day. I have to drink plenty of fluids regularly even if it means having a little loose output. Also if I ever feel like being constipated I... [ more ]
shoflo I got my pouch Sep 2015 [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Rules for J-pouch group
SM Sara Marie
Sara Marie I read it. Thanks! Very informative. [ more ]
Jan Dollar Here’s a link if you can’t find it: https://www.j-pouch.org/topic/...ow-not-to-be-a-troll It is pretty rare to be banned. It is preceded by loads of warnings and chances. Occasionally there is someone who creates turmoil and it becomes unworkable. It is regrettable, but a simple reality. Jan [ more ]
Sara Marie I will look that up. Thanks! [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Bleeding after dilation
S Spencer
Jan Dollar Thanks for coming back and filling us in on how things worked out. Glad you are OK. Trips to the ER are always such a pain, but in the long run it is so much better than sitting at home wringing your hands. Jan [ more ]
Scott F I’m sorry you went through an ER visit, but I’m glad you’re well. A small amount of blood can look like an astonishing amount in the toilet. [ more ]
Spencer Since alot of the threads around bleeding and dilation don't really have a conclusion I thought I'd share what happened after my last post. I had several more very bloody episodes. One at 5am seemed like the worst, so my assumption was that things were progressing badly. I made the decision to go to the ER. I had not eaten since 10am the previous day, drinking only water. I sat in the ER hungry but feeling safe. My vitals were take by the triage nurse and they were all normal. They got me a... [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Metamucil didn't work
MediMedi
Nancita I have a J pouch after having colorectal cancer 10 years ago- 2014.I wanted to share my Metamucil journey in the hopes of Helping anyone else searching on our website for tips and tricks. I became desperate to find a solution for the frequency of stools and how loose they were as no matter how I adjusted my diet or used anti-diarrhea medicine, The frequency and unpredictability of my bowel movements was severely limiting my ability to basically live, leave the house, go on trips Etc. I work... [ more ]
Bobish Cheers both, I use the 'my protein' version because it's cheap and the company is well known for simple honest quality supplements (amongst the UK body building community at least). So far I've had mixed results with a teaspoon twice a day (4 times my usual dosage). First day was great, second day uncomfortable with regular toilet breaks. Maybe it will settle down, I've been meaning to pay with dosage level for a while. Will let you know the outcome. Also I'm tempted to try benefiber at some... [ more ]
naplis In case you want to try the exact psyllium product I referred to in my post, it is "Yerba Prima Psyllium Whole Husks Colon Cleanser". It is marketed for heart health. The ingredients list: "Psyllium seed husks". That's all. I started with 1 Tbsp and worked up to 2 Tbsps over a year. Best of luck! [ more ]
See all 12 replies...
J-Pouch ForumsHelp! Need advice now!
6 Months of Unexplained Pain. Any advice?
IC Ian C
AMB Prolapse? Mine is not evident unless the endoscopist is using air to replicate passing stool, which reveals the prolapse that is interfering with emptying. It also makes me prone to bacterial overgrowth I believe. So, antibiotics for that. Symptoms similar to what you describe otherwise. The prolapse recurs and must be treated periodically. [ more ]
helena I have this. I’ve had the pouch 1 and a half years and it’s never been good for me. I plan to have it removed and go back to the stoma. The pouch isn’t for me [ more ]
Former Member How is your pain now? [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Update - New GI
C capper
New577 Hi, IMHO 6-9 is not high frequency. I was quoted by several surgeons prior to choosing one, that I could expect 6-8 BMs per day. And that’s exactly where I am at 3.5 years later. like you, on bad days; IPS, cuffitis, or SIBO flareups the number goes higher. on days where I only have 4-5, i know the following days I will have more as the small intestine needs to clear itself out. please don’t stress, your outcome is your outcome (same with me). We just have to make the best of it, as I am... [ more ]
Scott F That's useful to know, I think, even though there's not much you can reasonably do about J-pouch size, short of surgery. It's possible that your surgeon chose to make the pouch smaller in order to enable the blood supply to reach properly (I'm not certain that the anatomy works that way, but I think it might). It's also possible that your surgeon simply didn't do an ideal job. I think your GI's advice about managing the inflammation is exactly right. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Hyper Immune Response
N Nikino
Nikino @SeattleJane and @Sara Marie thank you both so much for your reply. I really appreciate your feedback and will look into all these things. Hope you have a great rest of your week. [ more ]
Sara Marie There is a product called "Immy" that is supposed to help with the immune system. I haven't fallen prey to any virus since I started taking it in the spring. My husband had COVID and we didn't isolate and I didn't get it. Maybe it wasn't the supplement, but maybe it was? [ more ]
SeattleJane For what it's worth, I wear a fresh, clean KN95 mask everywhere outside of my home, even outdoor places like garden nurseries, walks in parks, Farmer's Markets, etc. Sometimes I double mask in medical facilities or rooms packed with people, on the bus and airplanes. I haven't had Covid, the flu or even a cold since Feburary of 2020. I have had all the typical vaccinations and every Covid new vax and booster for people 65 or older. I can hear the Beatles saying "Number 9, Number 9" in my head... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Iron infusion
N Nancydiane
New577 I go into IPS, I was a lifelong sufferer of iBS and it has followed me here. Many foods and supplements send me into spasms (controlled with levsin) [ more ]
Nancydiane When you say it doesn't like them did it cause diarrhea or do they just absorb better sublingual. Hoping this is a one time deal as I'm still not tolerating a lot of foods yet which was thinking could be why not getting the iron needed but I don't know I'm very new at this. Thanks [ more ]
New577 I have iron infusions once a year as my hemoglobin drops too low. iron supplements I cannot tolerate and it’s just easier to have the infusions and be done with it for 12-15 months. unfortunately us pouchers have malabsorption of vitamins and minerals that are processed in the terminal ileum. I have to take vitamins d and b12 sublingual as the pouch does not like those either. [ more ]
See all 3 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.
×