Scott FOne of the reasons I’m still on Cipro and Flagyl is that I know there are no guarantees if I switch to a biologic, and the transition period is likely to require enormous patience and will probably be messy and unpleasant. I’m sorry you’re going through this, and I hope the Entyvio starts working for you soon. [ more ]
skn69I am an ancestor... literally...I've had my K pouch for almost 44yrs. At the time, my surgeon told me that it could last as long as I did...it is, in fact, my own guts so there is no reason that it should not. I'm hoping that he is right! K pouchers have a one-way valve, made of our small bowel, that gets intubated regularly throughout the day, so it is our weak point and it can break down and require a fix...that said, I've already had a few fixes so I am hoping that it lasts at least... [ more ]
PSJI just started Stelara 6 weeks ago. I had issues with Remicade, after 10 years started giving my psoriasis. It took a few weeks but it seems much like Remicade to me. Hopefully it will eventually get rid of the psoriasis because that is no fun either. I am hopeful this will continue to work as advertised (literally). [ more ]
Jan DollarGood catch Pouch 2021! Of course Stelara is not gut specific, since it treats psoriasis too. It just targets a different inflammatory pathway than the TNF inhibitors. Jan [ more ]
Pouch2021As Jan said, Stelara targets interleukin 12/23 pathway which mediates inflammation but this pathway is not gut specific and is implicated in other disease processes. Stelara is approved for UC and Crohn’s, but also psoriasis and psoriatic arthritis. It is in clinical trials for a few other rheumatologic diseases, as well. Just wanted to add this, as it is not like vedolizumab which does have a gut specific target (an integrin so totally different mechanism of action). This is important... [ more ]
Sara MarieI'm so glad you have found this to be the case! That was me too, at first. The gut seems to have gotten more sensitive over time. I hope that doesn't happen to you! I have had my pouch about 10 years longer than you, it looks like. [ more ]
BK 123Yes they both definitely lower your immune system. Strange that the GI doctor would take you off the Humira and switch to prednisone - but what do I know, I'm not a doc haha. [ more ]
MetsFanI heard that about the at home Covid test. Mu son's friend bought 5 of them. He took one and it was positive. The next day he did another text and it was negative, so he did another and it was negative, Finally he went to a testing center and it was positive. I don't have the option of working remotely and wear a mask from when I get out of the car until get back in it. Am I correct that both Humira and Prednisone lower your immune system? Thank You Bob [ more ]
Scott FIt’s important to remember that Covid tests (especially the home ones) can give false negative results, so your “cold” might be Covid in spite of the test. Is the mask you are wearing a well-fitted N95 mask? Do you *ever* take it off in the office (e.g. to drink water or eat)? Does it ever fall under your nose? In any case, it’s more questionable than ever before (for good reason) to go to a shared space while you have cold symptoms, whether you have a positive Covid test or not. Covid... [ more ]
MetsFanHello, I have found that Phazyme. It is one of the strongest gas medications. Also I have used Kaopectate. Of course diet plays a big part in it. Hope This Helps Bob [ more ]
New577Gasx works for me in that, I do not get painful bubbles .There seems to be less of it, and I am able to to pass it lying down. admittedly, some days there seems to be more. I think it is one of those things we can reduce but not eliminate. as for smell, sometimes it’s nasty hydrogen sulfide smell. I’ve also had diagnosed SIBO; and that produced, with nothing to stop it, the nastiest, foul smelling gas and stool of my entire life. admittedly, I have never tried a fodmap diet and I eat tons of... [ more ]
KSSo, I have been dealing with gas for past 3 years and my doc kept saying try FODMAP, gasx, gripe water, pepto bismol. Except FODMAP, everything worked to cure gas. But nothing prevented gas from happening. Recently, it was soo bad, my GI ended up doing a CT enterolgy and I went to my surgeon. He suspects I might have SIBO and treating that might fix this problem. Will keep you all posted. [ more ]
tulsamomNope. I don’t remember reading that. 🤣 I just spray it on like a half hour before I go to bed. [ more ]
Sara MarieI'm going to order some of the kind you recommend. On the bright side, even my itchy old spray helped (which I tried again this morning). I sprayed it on before my shower and did a few things, then washed it off to avoid the itch, but the magnesium seemed to have sunk in, at least some. I think I'll get this new (to me) kind and hopefully it won't be itchy, because I would love to be able to apply it before bed. The ingredient list is somewhat different. Question, the directions say that you... [ more ]
Sara MarieIf I am sedentary I usually end up feeling terrible. I guess it's a body type thing. [ more ]
PouchLogicI always have problems gaining weight. For me the best option is doing as little as physically possible and eating as much as possible. It also depends on what you can tolerate for diet. Please provide more information on your diet, daily routine and any other issues that could be at play. [ more ]
Maverick PlusIt took me 2 years to feel like I was back to a "new" normal. But some of your symptoms (as Scott said) may be unrelated and need attention from a doctor. [ more ]
Scott FIt seems like there are two separate things going on. The upper abdomen pressure and nausea probably has nothing to do with the J-pouch. It could be IBS, or perhaps something like gastritis. The difficulty emptying the pouch (with “dense” stool) sounds pouch-related, and for this I’d try adding psyllium (Metamucil) a couple of times per day and drinking more water. A J-poucher will generally have some trouble emptying if the stool becomes too firm. [ more ]
New577May I inquire as to the results of the scoping? Also, i experience some bloating if I eat “too much”. it’s hard to define but an example would be more than 4 ozs of steak. My pouch will be fill up very quickly and the BM is not pleasant. Other times I will have cramps until I release a watery BM. These are exceptions for me and since I eat only 2x per day and do not snack I seem to maintain a good QOL. others have found success by eating several small meals per day. Everyone is different so... [ more ]
Scott FDoctors who aren’t familiar with J-pouches sometimes have no idea that long-term antibiotic treatment is a reasonable choice. If they can’t be educated (e.g. by handing them a journal article) then it may be necessary to find a more knowledgeable gastroenterologist. My doctor was more open minded, and we learned together. He actually gave me a copy of a review article about pouchitis, but I had to point out to him that the article suggested that combination antibiotic therapy may be... [ more ]
SteveGFor me mesalamine also had side effects like a foggy brain and light fever. My pouchitis / cuffitis was kept in check with budesonide (Entocort) for many years. I still take a small dose of 3 mg every day. It takes effect mainly locally at the end of the small intestine and pouch. Yet it has only a calming effect for me, it does not heal inflammation. I also had c.diff from taking Cipro & Flagyl, but I continued with those meds after treating c.diff with another antibiotic, because they... [ more ]
New577Hi cb, Cuffitis started for me very quickly after takedown and I have been on canasa suppositories ever since with good success. I am so sorry that mesalamine does not work for you, as that seems to keep my cuffititis in check. My recent scope showed no inflammation but the biopsies still show microscopic colitis in the cuff. Having said all that, I am not willing to ever have surgery again, so I will do whatever it takes to avoid a repeat of dysplasia in that area. I even asked my GI if we... [ more ]
KushamiThanks, folks. I just realised I had asked this same question a year ago. Still can’t bite the bullet to go ahead with it. Seeing surgeon in March for second opinion. [ more ]
n/aI was diverted to an end ileostomy by laproscopic surgery, and was out of the hospital 3 days later. (I was able to have an end ileostomy since I was having the pouch removed a year later). I developed an ileus afterwards, but I don't know if ileus is "likely" or not after diversion. No problems with the ileostomy after the ileus cleared up. [ more ]
New577I was in the hospital after a colectomy, jpouch formation and loop ileostomy for 7 days. I would assume for a loop only and all goes well at least several days. i did not get an ileus after all that and was eating solid food within 48 hours. surgical outcomes vary, so who knows, but here’s hoping for the best. [ more ]
3CutedogsI was diagnosed with Crohns, as well. (Fistulas and a lot of mucus). I irrigate in the shower every day and it helps a lot! I take two Citrucel capsules in the morning and two before bed. This helps thicken up the stool. My sphincter muscles are scarred and the "opening" to my pouch doesn't seal. Due to this, I don't have much control and have accidents pretty much every day/night. But, I am thankful that I still have my pouch after 33 years and hope I can make it another 33. [ more ]
Godfrey NolanI would also recommend the Psyllium husk. If you can't stomach the taste, the pills work just as well. [ more ]
samlc25My gastro did a flex-sygmoidoscopy and detected it immediately. Lots of ulcers and white spots that he said are consistent with Chrohn's. I'm pretty sure I have had it for at least a year, maybe two, but I just didn't get it checked and assumed that that was life with a pouch. I would definitely do a scope just to make sure you are good. I just started assuming I'm as good as I can be when I should have been getting scoped. Best of luck to you. [ more ]
Barbara TSpecks you are then! When I read back, I see I also felt very lost and alone. My ex husband (married 25 yrs, divorced 34 yrs) was a great help when I got home from hospital. He saw everything that I went through and was so kind. I couldn’t have done it without him. He also looked after my precious doggie, Rupert. Picture attached…of Rupert not my ex husband, [ more ]
SpecksWow-that was more than 5 years ago. It looks like we've both come a long way! Thank goodness for that! I will definitely look up Dr. Keane. And no, Specks is not my real name. I'm not usually a poster in forums like this and when I joined this group I was really desperate and felt very alone. I figured it was appropriate to use a pseudonym, so picked the name of a stuffed animal my kids gave me:-) My real name is Rebecca, but I kind of like going by Specks:-) [ more ]
Barbara TYes Monash uni is the place for all we need to know. I was part of a world wide research project into LARS run by Dr Celia Keane who wants to change the questionnaire that gives a score on LARS severity and also making the medical profession aware of this syndrome post iliostomy. She is in NZ. If you google her you’ll see the work she is doing. I am aware of these 2 websites. During the nearly 8 years I have spent many long hours looking for help. I agree there is much more low FIDMAP stuff... [ more ]
Scott FI’d suggest consulting another surgeon for another opinion, unless you have reason to believe that the weight loss will be pretty straightforward. While it’s true that many surgeries are easier and safer when body fat is low (or lower), it’s also true that surgery tends to be needed by people that exist, rather than imaginary future people who weigh less. [ more ]
lclassenThanks Scott. That sounds very much like my symptoms. After a physical exam, the surgeon stated that she won't do surgery until I drop the weight. So, that's gonna take a while 🤔. Thanks for the help. [ more ]
PortiaDr Bharati Kochar—caring, compassionate and dedicated to patient care. Wishing you all the best in your journey! [ more ]
scallopThanks so much. Who is your g.i. doc at MGH? [ more ]
PortiaHi @scallop , I’m not familiar with Dr. Hall and haven’t heard anything about Tufts’ work involving j-pouches, but I can tell you that MGH has been doing research and procedures for many years, including a well regarded center for gastroenterology. Dr. Kunitake took over from my surgeon Dr. Becker (he did my jpouch over 32+ years ago) when he retired, and I have heard many positive things about the surgeons practicing there today, including Dr. Kunitake whom I have met. I am a patient of the... [ more ]
KSoh wow! glad something is working. for me high protein diet kills my tummy [ more ]
JaypeaI changed my diet and cut out carbs and sugar....whoa! What a difference. No more bloating. I follow a sort of keto diet and have had no issues. I do have sugar and carbs on occasion because life on keto is tough as I fly around the world for a living and am without my own kitchen for days on end. [ more ]
Sara MarieI wonder if diflucan would help. I used to take it for stubborn vaginal yeast infections and I took a shit ton of it when I had a yeast infection throughout my entire alimentary canal when I was in the midst of the "take-down". It seemed to work. I haven't had this medication for almost 20 years but sometimes I think of it because I still have bouts of yeastiness. I suspect I have a bit of systemic yeast. [ more ]
Scott FSIFO doesn’t generally cause coughing, as far as I can tell. My chronic cough turned out to be difficult-to-diagnose asthma (I needed a test called a methacholine challenge). The treatment of SIFO (if you have it) would be prescription anti fungal therapy and/or discontinuation of the acid blockers (they seem to be implicated in SIFO). Most antibiotics don’t generally treat fungi, and might make it worse. The antifungal treatment hasn’t been studied very well, I think. [ more ]
BobishInterestingly i see that a recent (2018) study shows that taking probiotics to recover from from antibiotic treatment could actually be counter intuitive... gah....theres never any clear answers is there.. Post-Antibiotic Gut Mucosal Microbiome Reconstitution Is Impaired by Probiotics and Improved by Autologous FMT Basically the prevleance of a few strains of good bacteria that you have supplemented hinders the ability of other healthy strains to get a foothold. People who didnt take... [ more ]
Scott FIt's not at all clear what microbiome is best for a J-pouch, so there may not be much reason to guard it quite so carefully. If your doc saw pouchitis it might be best to treat it, but you could choose to wait until symptoms appear. In my experience the symptoms sometimes came on so gradually that instead of noticing that I have a problem my life just slowly got worse and worse. I've been on Flagyl for years now, and I care a lot more about my quality of life (which is excellent) than about... [ more ]
New577Early on I thought I had pouchitis. I tried Visbiome, it did not help, so I abandoned it as a therapy. My GI explained to me that the small intestine (specifically the pouch) was going to get populated with bacteria that was never meant to be there, and thus probiotics to counter that bacteria. I never understood the whole science behind it, and never understood how a hydrogen breath test diagnoses SIBO but the 1-2 month course of bactrim for my UTIs ended it and it has not returned. I’ll... [ more ]
Scott FDocs are telling J-pouchers to take probiotics because studies have shown that probiotics reduced incidence of pouchitis. VSL #3 and Visbiome are lableled specifically for J-pouchers. I understand that Dr. Shen may now be recommending a different approach to his patients, but let's not overstate this. There's plenty of uncertainty here, and humility is warranted. I'm not aware of evidence that probiotics (or yogurt, for that matter) cause SIBO. [ more ]
Pouchomarxjust curious if you were on probiotics before you were diagnosed with SIBO? cuz probiotics are not meant for the small intestine and can cause SIBO actually. Not sure why docs are telling jpouchers to take probiotics. Dr Shen states not to and instead do green tea extract instead [ more ]
KushamiRegarding mild pain at the old stoma site – I had that for many years after takedown. I believe it is not uncommon for us to have mild pain there. Can’t comment on the hernia aspect. I seem to remember reading that hernias are sometimes porrly understood, so if you are still concerned you might want to track down a hernia expert. [ more ]
FredzI have had two doctors feel the area and say it’s not a hernia, but idk. Hopefully just scar tissue [ more ]
SteveGHave you shown that bulging out to your doctor? That really sounds like a hernia. Though a hernia does not need to be associated with pain. Mine is unremarkable for 5 years now, it is above the belly button and it bulges out when a pressure builds up inside. For example when doing a movement as you described. But that mild pain may also be related to scar tissue, as your doctor suspected. [ more ]
FredzThanks! It really does not smell that bad so idk. [ more ]
JaypeaAll you need is my nose to diagnose C Diff. I'm a paediatric ER nurse too and I just have to smell the diarrhea (eww gross I know) to know for sure. Please have a stool sample done to rule it out and make sure you stay very well hydrated. Wash with soap and water as alcohol based hand rubs will NOT get rid of C diff (family members too as you don't want to spread it). Good luck. [ more ]
FredzAgreed, thank you so much Rifaximin is used to treat c diff so it would seem strange that you could get it from it. [ more ]
JaypeaIn order to interpret a complete blood count for a hematological diagnosis you need many more results than hemoglobin and hematocrit. Things like MCV etc. Your body has been through a lot over the past little while and it is going to take some time to settle down. It sounds like you are doing all the right things and monitoring which is so important. Keep up the good work. [ more ]
WinterberryThank you, Scott. My doctor did not seem concerned. In fact, she did not call me to tell me the results of my blood work, which were mostly in range. I asked the secretary to send me the results and that’s when I saw the h and h in the “elevated” column of numbers. You’re right — it is not (outrageously) elevated, so I won’t worry about it. I am diabetic so I am watchful for anything that might put me at higher risk for heart disease, stroke, etc., and the number jumped out at me. One number... [ more ]
NikiasVWHi, is there any follow up on this topic? As I believe I have very similar complaints... [ more ]
TomUHi Jeane i don't think my Anismus is caused by a structure as I've had an MRI already and nothing like that was spotted. can you tell me more about your potential surgery? I thought any cuts to the muscles that are causing the tightness would risk incontinence? [ more ]
jeaneHi Tom, I have this same issue and mine is due to scar tissue at the anastomosis connection. I am due to Cleveland Clinic for some additional tests as well. I have a very had time emptying my pouch and I also have multiple fissures and anal stenosis due to this. I am not sure this is your issue or not. I have had several dilations and my anastomosis always closes back up. I am looking at some surgery to cut into the connection or a possible pouch redo if that is what Cleveland suggests. I... [ more ]
MysticobraI had it on my scalp before being diagnosed with uc. Years before. Now that my colon is gone I have no psoriasis but I do have other skin issues. Cannot remember what it's called. I get these red bumps. Itchy. Omgoodness. I have a cream for it. But over the last few months I've been having other skin issues. I have no idea what's going on. Dry skin in some areas. And some areas it just plain itchy. I don't scratch. I know better. But I am going to have to go see a dermatologist soon. My... [ more ]
ljh824Starting Skyrizi next week. Fingers crossed. Remicade didn’t work. [ more ]
AllyKatI have been on Entyvio for 7 years for inflammation but due to a new recent diagnosis I might not need it so this is the new problem, to continue or not? And yes in the beginning I was extremely nervous about taking it and now I’m extremely nervous to possible stop. [ more ]
DarrenKSMy story similar to others here:longterm UC followed by JPouch 2001 with pouchitis pretty much whole time after. Diagnosed in past couple yrs with Chron’s. I tried Remicade and had adverse reaction (severe psoriasis) and now on Stelara. Only moderate control though - fecal calprotectin levels still >400 and I am taking Stelara every 30 days (double the typical dose). So yes, inflammation still there…. I am told the drug Skyrizi (link below) may be better suited - will hopefully make this... [ more ]
ceewhttps://www.j-pouch.org/topic/...0#704880547818120310 I’m glad they found out what the problem was and I hope it has been taken care of. [ more ]
AllyKatTurns out I had internal hernias one dated back from a defect from the original pouch surgery 23 years ago. I hope this is it. I hope you find your answers. It amazing that with modern ct scans, mri, scopes etc it can take years to find the issue. [ more ]
PedroMadrugaCTBarrister, Scott, and Sara Marie thank you all for your knowledge and advice, it is much appreciated. I now have a better understanding of the immune system. I will keep taking my vitamins and supplements with the addition of celery juice (I used to juice daily until my colon burst which led to creating the pouch) [ more ]
Sara MarieMeanwhile you can support the spleen, which is a major player in the immune response, by cooking your veggies, chewing your food well, practicing good food combining, avoiding refined sugars and starches, etc. When we make digestion easier, we free up energy for other parts to use. When I'm having a strong immune response, my spleen literally hurts. I take vitamin C and zinc to help relieve some of the load on the spleen, but only for a while, not all the time. Probiotics can help, too. And... [ more ]
Scott FThere is a large industry devoted to the notion that the immune system has a simple level that can be artificially weakened or enhanced. It’s certainly true that there are diseases and medications that can disable specific component of this complex machine, and thereby impair some of its responses, but it’s much less true that it can be “boosted” in a useful, general way. It’s worth remembering that inflammation is an immune system response (and usually a useful one), but most of us don’t... [ more ]
Sara MarieThank you for sharing that information. You have really been through the wringer, as a lot of j-pouch owners have. I'm so sorry about your kitty. Cats can know us like no one else can. I was so connected to my cat that was with me 18 years that when she died it felt like a part of me was missing. I still feel it. It's been 12 years. [ more ]
KatSydneyThank you for your reply @Maverick Plus My output is getting better though definitely a case of trial an error... something I think we all know too well! [ more ]
Maverick PlusI have not had any resections, but I have had my share of obstructions. If you have watery output, you are probably not blocked. If you were blocked, nothing would come out. With abdominal surgery, the body has had a shock to its system, so it would take many more days to recover unless it was done with a laprascope. I hope that helps. Maybe someone whose had a resection could say more. Sending healing wishes to you. [ more ]
Sara MarieDo you think that if you did take it you'd never get pouchitis? I don't know if I've ever gotten what people call pouchitis, but I know I have inflammation and it's systemic and definitely there is low level inflammation in the pouch often. I'm curious about your habits anyway, being a patient of Dr. Shen. I wonder if you have picked up any other tips from him? [ more ]
Pouchomarxbelieve what you want, I am going to side with Dr Shen who has done the greatest amount of research on jpouches in the world. Not to mention he is the only GI in the world that has pioneered several scope procedures of the pouch to try to avoid surgery and fix many complex issues of the pouch. needle knife therapy and banding procedure for floppy pouch and prolapses just to name 2 [ more ]
skn69Thank you Scott, I have stopped, for the most part, carrying my groceries and gave in and bought a buggy...but occasionally, there is just too much to fit into the buggy! Or when I come home from work I pick up a few things (too many) and carry them...it is a juggle with books, computer, h.w. etc I will try not to! I've finally given in and seen the school doctor who has put me on 'distance work' whenever I do not have classes on campus or an obligation to be there (it is 2hrs on... [ more ]
Scott FPain management without NSAIDs can be difficult. You might get some results by combining strategies rather than focusing on one. Here are examples of the kinds of things I mean: Tylenol should be safe for you if your liver is okay. I think most people get some benefit, even if it isn’t the whole answer. For arthritis I take Glucosamine Chondroitin. It’s far from a miracle, and the best data is in knee arthritis, but I think it may have helped my hands a bit. I take NSAIDs (Celebrex) only 2-4... [ more ]
skn69Thanks Scott, I will look into it... Ideas for pain management? I already do physio 2xs/week for years, use heat packs nightly under my spine, execise 5xs/week to maintain muscle mass and flexibility...not sure what else I can do to maintain myself without hurting myself even more...I walk everywhere although fewer kilometers recently and pull a buggy or carry all of my groceries 1 mile each way (yes, a very active lifestyle)...as years go by, I find that it takes longer each time to 'heal'... [ more ]
BK 123I load up on Immodium, make sure not to eat a few hours beforehand, and obviously empty my pouch right before. Takes the spontaneity out of things but I'd rather prepare than have a slip up. [ more ]
New577I have used a cotton ball since my takedown. I have a minor minor amount of leakage and its a routine I have gotten into. it also helps avoid embarrassing situations. [ more ]
Pouch2021Depends on how full the pouch is. In the AM with a full pouch I usually get about 1/2 to 2/3 of a fleet bottle in (using warm water). I often do 2 enemas back to back and can get most of the bottle in on the second go around. I just fill the pouch until I feel a pressure like sensation. Sometimes if I insert too much I get an uncomfortable pinching pain in my left lower quadrant which goes away immediately when I empty. [ more ]
Mary4130Are you just taking a small amount of water..a cup or so? [ more ]
Pouch2021I try to hold in the warm water as long as I can so it has a chance to loosen things up (sorry TMI!). I insert the enema kneeling on all fours. If I’m at home I do some gymnastics after to move the liquid around but if anywhere else I get off my carefully constructed paper towel mat ASAP. Just like with UC, I’ve learned where the hidden, cleaner bathrooms are at work. I also make sure x2 that the door is locked to hopefully avoid sharing my bare ass, down on all floors, with my colleagues. [ more ]
New577I think you are in good hands. if they are performing techniques like chromo, etc they are on the cutting edge. while we cannot predict the future, being with the right care team will help mitigate nasty surprises. you will have plenty of time to worry about surgical decisions when the time comes. In the meantime: Dont worry, be happy!! [ more ]
Lili RGreat advice! I feel like I have been given a wake up call. I plan to take better care of myself and keep my stress levels down. At the same time my I’m prepared for the possible eventualities. [ more ]
New577Hey Lili, glad to read you are taking your time with this. the first time high grade dysplasia showed up in my rectum, the GI doctor freaked out and basically fired me and referred me out to an expert (my current) GI. New guy repeated the colonoscopy and the HGD was gone. We did not talk about colectomy again for 4 years until lesions stated appearing. these things can take a long time to manifest, so caution and prudence are in order, which gives you additional time to evaluate your options... [ more ]
gratefulHi Winterberry, I take superior Source Biotin 10,000 mcg microlingual (dissolves under your tongue) my hair got really thin after the surgeries due to malnutrition. i also use rosemary oil mixed with some hair oil in a dropper on my scalp. i eat lots of protein (chicken, beef, shellfish (great source) and protein shakes made with whole grass fed milk. The pouch doesn’t like the protein shakes that much so I try to sip it slowly all day. my hair doesn’t fall out anymore and it has gotten... [ more ]
ktaI have been taking Biotin for about a year now. It is also the Costco dose. I do not see a difference in my hair, but my nails are a bit stronger. [ more ]
ljh824Not sure what's in it, but I started using Nioxin after all my surgeries. Worked wonders. My hair is fuller now than in high school. [ more ]
Mary4130Knowledge is power. I ask anyone who has some opinion regarding irrigation. I don’t use all the info but I can see what others do to maintain their j pouch [ more ]
Mary4130So you’re saying if you have a j-pouch to not do a colonic or colon irrigation? [ more ]
Former MemberThank you for such a sincere reply. I’m sure I also speak for others when I say; we totally understand what you’re going through, how you’re feeling and how such issues can affect your mood and personality; however, this is so difficult to convey or translate in text and via a web forum. We’re here to help, best we can. Thanks [ more ]
WinterberryFor me, it depends on what I’ve eaten. Pasta, potatoes, fish, chicken or rice makes light colors, beets come out raspberry colored (so don’t be alarmed). When it is darker colored then I’ve eaten meat. I also see green when I’ve had lots of green vegetables. This morning I ate a blueberry muffin and by lunchtime I saw fully formed blueberries! [ more ]
Sara MarieBeets cause alarming or pretty poops, depending on how you look at it. I used to notice that the lighter colors were more evil, but now that I have psyllium and oatmeal every morning, I no longer associate light colors with burning. It's that sticky, syrupy texture that is most associated with burning for me (and that can definitely be light colored). Oatmeal and psyllium help make clean poops that don't require a lot of wiping, and oatmeal poops are light colored, but not burning. [ more ]
JaypeaMine is totally related to what I have ingested and how long it took to transit. Anything tomato and someone else would think I was bleeding to death. Mine rarely gets to the dark brown stage as I follow a very low carb/sugar diet and have a rapid transit. [ more ]
DaleerI've had a j-pouch since 2006. I regularly lift extremely heavy weights at the gym with maximal effort and have competed in weightlifting competitions since getting my j-pouch. I'm sure it depends on the construction of your j-pouch, but for me the j-pouch has never been an issue or hindered me from maximal effort exertion even to the point of bursting blood vessels in my eyes. [ more ]
BK 123Thanks all. I got the clearance from my surgeon to ski and get back to playing soccer. Hoping you all have a happy holiday and New Year! [ more ]
allswellSo I took the paxlovid again because I got covid for a second time this past week. I again got the same symptoms, really bad butt burn and more frequent runny stools. It's crazy, but I had forgotten about starting this thread back in May. I had even forgot about the possible side effects I experienced the first time. Now I am wondering if my jpouch never really got that much better after my initial post. I did end up giving up coffee in August which really seemed to reduce to the butt burn... [ more ]
CTBarristerI think that is probably all correct. However, because of the positive test, I cannot go to work, must continue working remotely from home (which I hate, because I cannot do everything I need to do at home), and I am going to miss my firm's holiday party tomorrow night, which is a MAJOR bummer. I also wanted to tell everyone I know exactly how and why I got Covid and to caution everyone on this board, because we are now in the midst of what appears to be the usual post-Thanksgiving Covid and... [ more ]
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
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