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J-Pouch ForumsHelp! Need advice now!
Not able to empty pouch completely
MT Mary Tara
Mary Tara Thank you ever so much for the reply PouchLogic, your advice is very helpful indeed. I suspect my doctor will put me on a course of ciproflaxin as that tends to be the antibiotic of choice in most occasions but I’ll see what he says. best wishes Mary T [ more ]
PouchLogic I wouldn't be surprised to find out you have at least low grade pouchitis. Mine always starts out slow and I don't realize what is going on. Hopefully you can get a better answer from a Dr. Probiotics can make you feel extra gassy/uncomfortable if pouchitis is building. Good luck [ more ]
Kushami ❤️
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J-Pouch ForumsGeneral Discussion
Soothing an upset/irritated bowel
K Kushami
Kushami I’ve spoken to two doctors and a nurse, and it is known that it is a medication side effect. (The medication I tried causes GI upset in everyone who takes it, colon or no colon.) They and I are 100% sure it isn’t pouchitis or anything else specific to the pouch. It’s just a very unhappy bowel, as anyone’s bowel would be after gastro etc. :-( I think low residue is helping. The doctors and nurse say to “wait it out”, but I just thought folks here might have some insider tips. I didn’t need... [ more ]
PouchLogic If this is still ongoing you should be seen by a Dr. It could be pouchitis, it could be a part of your bowel is hung up on some scar tissue or any other number of things. Otherwise it sounds like you did what I would do in your case. Hopefully it has gotten better or you have gone to see a doctor. Good luck [ more ]
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J-Pouch ForumsHelp! Need advice now!
3 weeks post takedown - not emptying
T TheoG33
Joe's wife Thank you! He went in this morning... Waiting for the hospital to call when he is back in his room... hoping everything goes ok. He developed an ileus both times before. Praying it does not happen again... [ more ]
lablover @Joes wife I am here for you! My husband has had his j-pouch for 28 years now. if you need moral support from a spouse that has been through it! :-) here I am. [ more ]
Joe's wife Thank you for the explanation 🙂 [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis and cuffitis
A AnonymousJ123
New577 I agree with Scott’s post above 100%. I have been on Canasa for over a year to keep my cuffitis from flaring. And I know from the pouchoscopy and calprotectin test that it is working as there is minimal to no inflammation. probiotics never really worked for me and antibiotics worked for my SIBO. I do not have any history of pouchitis symptoms, so I am no help in that area. [ more ]
Scott F If you want to thicken up your stool then psyllium powder might do the trick. A J-poucher usually does better with soft stools rather than formed stools, though no one likes watery stools. Cipro and Flagyl usually work pretty well on pouchitis, which commonly causes urgency and leakage/accidents. They may not do much for cuffitis, though, which could possibly be the source of your pain. Cuffitis is often treated with topical mesalamine (e.g. suppositories or enemas), which can take a few... [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch and diabetes
AB Alison b
Leeloo What about steel cut oatmeal and quinoa? I have a similar diet tolerance & I’m vegetarian. Also white mountain Bulgarian yogurt from Whole Foods? Check with your doctor, I don’t really know if 5 g of sugar/cup in that one is ok. I worry about becoming diabetic. How old are you? What were your symptoms? [ more ]
Kushami Have you tried anything that might allow you to eat a wider range of foods, such as Metamucil? Also, with the foods you listed as your mainstays, are you vegetarian? The reason I ask is that lowering carbohydrate and increasing protein can be a good strategy (obviously depending on your doctor’s advice). But increasing protein can be take a bit of thought for vegetarian j-pouchers that have to avoid legumes. I eat a wider range of foods than you, although still avoiding high insoluble fiber... [ more ]
Sara Marie ❤️
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J-Pouch ForumsGeneral Discussion
Horrible gas pains- I think it’s gas?
B Bubba1028
Aimc Bubba, you didn't say exactly where the pain is, but could it be gallbladder? It's usually upper center to right sides of abdomen. Causes gas . Many of the same symptoms we have with everything else. The pain is like someone ctting with a knife. I use a heating pad. It helps but takes a bit of time. I'm just not wanting another surgery, even though that is probably going to happen. Anyway, just a thought. Hope you get some answers. Aimee [ more ]
Jaypea Sounds like a partial obstruction to me. [ more ]
Bubba1028 My takedown was in 2017, so I’m going on 6 years lost takedown. I think it was a partial obstruction or gas behind an adhesion. I know I have adhesions and my doc noted one in particular when he did a scope that caused almost a 90 degree hook in my small intestine, and it’s caused problems before. i bet that’s it. It was a lot better today, so glad. I was about to take some of my leftover narcotics! Thanks for listening ya’ll! [ more ]
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J-Pouch ForumsGeneral Discussion
Finasteride for BPH
AP Al P
New577 I have been on dutasteride (avodart) for the last two years. If is very similar to finasteride (proscar). It has dropped my PSA from 10.4 to 4.5 and shrunk my prostate volume from 70+ cc’s to about 50. Mr. Pouch tolerates the drug very well. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Post surgery texture changes
Z Zomode
Sara Marie Before I got reconnected I didn't have any discharge out of my butt until shortly before that surgery was scheduled. I had a bunch of fluid come out and it was light-colored, and almost white. It also kind of burned. I also had sores in my mouth. I told my surgeon I thought I had a yeast infection throughout my alimentary canal and he, in his infinite wisdom, ignored me. Then when he went to do the surgery the fluid came rushing out and he freaked out and quarantined me at the end of some... [ more ]
New577 The mucous discharge after my colectomy was light brown/reddish during the ileostoemy period. just before takedown at 13 weeks it turned clear. surgeon told me not to worry about it. [ more ]
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J-Pouch ForumsGeneral Discussion
Doctors in Orlando, Florida
K Katkando
Jess623 https://www.crcorlando.com I just moved to FL and my surgeon from Denver recommended this group. [ more ]
ljh824 Dr John Monson. Straight shooter. Saved my life. [ more ]
Pouchomarx I am in Ohio and Dr Remzi did my redo here. but my sister who has Crohns in Orlando, needed a resection and Dr Remzi personally called him to get my sister in for surgery. I am not sure if he does Jpouches but i know hes a great colorectal surgeon that is a colleague of Remzi . Justin Kelly, MD | Colon and Rectal Surgery | Tavares, FL | AdventHealth [ more ]
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J-Pouch ForumsGeneral Discussion
Resection
AllyKatAllyKat
AllyKat Omg I’m so sorry. I guess anything can happen. no you read this right. I guess you can have a resection for many things. Mine will be to reduce the loop that’s twisting and making me miserable. My surgeon said I will not need a ostomy. One never knows. So glad you’re better. [ more ]
New577 If I am interpreting this question incorrectly please forgive me, I think I had a resection when my first takedown missed an enterocutaneous fistula. 10 days later it leaked and I had emergency surgery. As I was being wheeled in, my surgeon warned me that it could be open (it wasn’t), and that I could wake up to a permanent end oestomy. Even though I was septic, he took a chance with the resection and I woke up two days later (was on a ventilator) with a redone anastomoses. That was 22... [ more ]
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J-Pouch ForumsGeneral Discussion
Dry eyes & kidney stones
B Bubba1028
Aimc ❤️
Kushami Just wanted to mention an underdiagnosed cause of dry eyes – Sjogren’s syndrome. It is estimated that one in ten people with dry eyes in the US have it, so if you are over 40 it is worth discussing with your doctor. [ more ]
roseviolet If you are trying for effective oral rehydration solutions, Google "St. Marks Oral Rehydration Solution." You can inexpensively make a liter or two to leave on your counter or bring with you to work in a water bottle to sip throughout the day. This has the requisite salt, sodium bicarbonate, glucose/sugar needed to absorb electrolytes along with water. (one of the ORS also adds No Salt/Morton's Lite Salt, which contains potassium as well.) It can be flavored with lemon, Crystal Light... [ more ]
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J-Pouch ForumsK-Pouch Korner
Going at work or public bathroom
P Peter855
dpol Peter, regarding the odor issue, many years ago I started taking a digestive probiotic and it reduced the smell a decent amount. I also know that some people use Devrom. I wish you the very best!! [ more ]
dpol Going to the restroom at an office building or other public places is the one time I wish guys carried purses. I never needed to irrigate to go to the restroom in a reasonable amount of time, but cleaning the catheter was a problem. When I was young and did whatever was necessary to have a normal life, the way I cleaned my catheter was not pleasant. I did this for over 25 years and then was able to move my work home and one of my big motivations was to not have to do the things I did for so... [ more ]
Shavon ❤️
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J-Pouch ForumsGeneral Discussion
Pain
MA Mr A
Scott F If the pain has been the same since the pouch was created 10 years ago, and persists even though the pouch isn’t being used (you wrote that you have a loop ileostomy), then it’s reasonable to believe that the pain may be related to the construction of the pouch (this could include adhesions that developed when the pouch was made). What does your surgeon (or gastroenterologist) say? [ more ]
Mr A Thanks for your reply Scott had 3 stage pouch created about 10 years ago Defunctioned within a year i had pain right from when pouch was done Have loop ileos its been the same from when pouch was done what I feel is like a stretching pain the stretching in the pelvic area is always there I’ve just had enough can it been pain from where the pouch was stitched together [ more ]
Scott F People can have pain anywhere. How long ago was the pouch created? Is it currently in use, or is there a loop ileostomy? How long after pouch creation did the pain start, and how long has it been going on? Is it getting worse, getting better, or staying the same? [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch surgeons
AllyKatAllyKat
BK 123 Associated Colon and Rectal Surgeons - Bertram Chinn's group in Union County NJ. Mine was done with Dr. Suraj Alva who is a part of his group. [ more ]
AMB Ravi Kiran. He was at the Cleveland Clinic & is now at Columbia. He's an expert at k-Pouch construction as well as J-Pouch & revisions. I was referred to him by another Cleveland Clinic alum. I also considered Dr. Hull. I've seen her lecture a few times and she is impressive. I had a great 2- part surgery with Dr. Kiran. One of the many benefits of Columbia is that when I started with floppy pouch issues, I was quickly set up under the care of Dr Shen. [ more ]
Sara Marie ❤️
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J-Pouch ForumsGeneral Discussion
Acarbose
K Kushami
Kushami Just in case anyone looks this up in future, I advise caution with this medication (or similar, e.g. miglitol). I had a bad reaction to it and ended up being unwell for several days. It took a me over a week to recover from a single day’s dosages. If you do try this class of drug, take one dose with one meal and then wait 48 hours to see whether you tolerate it. Probably best to take half or quarter of the recommended dose too. If you tolerate it, well and good, you can gradually increase up... [ more ]
Kushami Good point, Scott F. I think I will try it very carefully. [ more ]
Scott F Some drugs that can cause diarrhea do so through an effect on the colon. In those instances we would surprisingly be spared that side effect, though it would be very difficult to predict when this would be most likely to happen. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Is there any hope for someone like me to not require a permanent ostomy?
Len78Len78
Scott F Like New577 I understand pouch advancement to reuse the current pouch. This isn't normally called a "redo" - that the name for building a brand new pouch. In pouch advancement the attachment of the existing pouch is re-made directly to the anal canal, instead of the rectal cuff. [ more ]
New577 I always thought pouch advanced preserved the pouch and cuts out the cuff, hand sews and mucosectomy. if the pouch needs to redone you will lose another 12-14 inches of ileum, which has its own implications. again, although it sounds like you are in good hands, is your surgeon well experienced in advancement and/or redo surgeries? I think you need to literally take this one day at a time, have the MRI this Friday, then based on results evaluate your options with the surgeons. you are about... [ more ]
Kushami ❤️
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J-Pouch ForumsGeneral Discussion
Tap water enema ok?
J Jpouch8888
Scott F I didn't misunderstand your post. There are places in the body that require significant biological control of anything introduced, like a sinus rinse. The pouch doesn't require that, nor does it require an osmotically balanced enema. [ more ]
OscarThePouch I think everybody misunderstood why i mentioned the sinus rinse. I was not asking any questions about sinus rinsing. I was merely suggesting that the salt packets that come with those kits may be usable in an enema if you want to make your own saline. I'm aware of the brain amoeba stories but it isn't relevant to this discussion. Not sure how my words got misunderstood as I think I typed them pretty clearly. Maybe everybody was reading too fast. [ more ]
CTBarrister Here is a news report on the latest "catastrophe" on using tap water for a sinus rinse: https://www.npr.org/2023/03/03...-brain-eating-amoeba [ more ]
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J-Pouch ForumsGeneral Discussion
Hernia
J Jaydog
Jaydog I truly don't think it has anything to do with lifting. I was in the gym this morning doing pretty heavy squats with no issues at all. It's only when I cough or push when using the bathroom that it pops out. At any rate I'm scheduled for surgery in May 3. [ more ]
Pouchomarx my guess is weightlifting was weakening the area over time from all the pressure and finally gave way from pushing.. I got a small one at my iliostomy site a few months after takedown carrying a case of beer for a long walk.. had it fixed [ more ]
Sara Marie ❤️
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J-Pouch ForumsGeneral Discussion
Can a sinus tract get worse ?
PouchomarxPouchomarx
Pouchomarx its been pretty good for the most part.. since the surgery i have very minor intermittent leakage though so always use Ilex and a small pad just in case.. I was told that for a redo there is risk of this due to handstitching instead of stapling for redos and the mucousectomy.. but it was a redo or permanent bag so i will deal with it as its not too bad. [ more ]
OscarThePouch Did the redo work out? Are you doing well with it? [ more ]
Pouchomarx wow this post is 10 years old...lol.. I ended up needing a redo with Remzi in 2015. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Taking BP med Nifedipine 30mg ER with a J-Pouch
TechcatTechcat
Techcat Thanks Scott! I’ve had issues with hard coated potassium pills not being broken down before they were in the pouch. Changed to a different more chalky version and did fine, so I think you may have given me the solution. Anyone with a pouch meets doctors who aren’t as familiar with the pouch’s effects on the body. I did contact the doctor and ask for another version of the Nifedipine to try and picked it up yesterday. More pills to take each day but will likely work better. I think of myself... [ more ]
Scott F The issue isn’t that it would be likely to impact your J-pouch, but rather that it might not have been fully absorbed before reaching the toilet (and the amount of absorption could vary as your transit time varies). It will work better for some than others. I take a delayed release acid blocker and it seems to work just fine for me, but many J-pouches have a more rapid transit time. [ more ]
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J-Pouch ForumsGeneral Discussion
Any news on ilex availability?.
V Vickie
Pouchomarx i was told the same, a few more months. I tried another product that specifically said "compared to Ilex" and it was a soupy white cream that never dried like Ilex. I like Ilex cuz it dries and i can tell when i leak which is small and intermittent but anything else i cant tell if its the cream or if its me leaking. still fighting with company to get my refund.. [ more ]
Jfill21 Vickie, I agree. I have found nothing else that works as well for me. [ more ]
Jfill21 Go to the US website for iLex: https://www.ilexhealthproductsusa.com/ [ more ]
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J-Pouch ForumsGeneral Discussion
BELLY FAT ..WAY TO LOSE IT?
PouchomarxPouchomarx
Former Member ❤️
Pouchomarx it definately helps with visceral fat which is the dangerous fat around the organs. That is dangerous for the jpouch especially.. [ more ]
Mysticobra I do appreciate all the ideas. Motivation is my problem. I'm just lazy I woukd hope the original poster has gotten some ideas. There are plenty here. Just hope Poucho has motivation. If he has that. He's got it made. R. [ more ]
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J-Pouch ForumsGeneral Discussion
Needle knife sinusotomy
P Pouch2021
Pouchomarx i was having one a few times with DR Shen, but ended up having other issue as well so ended up with a redo with Remzi [ more ]
OscarThePouch @Pouch2021 Oops forgot to say that I am glad you're hanging in there and I wish continued healing for you! [ more ]
OscarThePouch They opted not to operate on it yet. (For anyone who cares, here's the original story - I put it in Pouchitis because that's what they originally thought it was: https://www.j-pouch.org/topic/...symptom-what-is-this ) The imaging for some reason makes it hard to tell if it is a sinus or a fistula but either way it is a tract. It's about 3 cm to the back of my pouch and goes down to my coccyx ... i think it's like 4.5 cm long? I'm not a radiologist so maybe I'm wrong. The doctor thinks that... [ more ]
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J-Pouch ForumsGeneral Discussion
Noisey Trumpets Blaring
JI Jim in NYC
SnowDog Try putting the seat up and sitting directly on the porcelain. With a little practice you can kinda create a seal and block a huge amount of the noise. At the pro level, you flush right when you release and that takes out most of the smell too. I saw this suggested here years ago and it really changed things for me, good luck [ more ]
Kushami G’day Jim, For hydration, have you tried oral rehydration salts? There is a “bare bones” product available in the US called TriOral that might help. One sachet between mealtimes (so not close to eating) could help. Also, just in case, have you had your symptoms of dryness checked by your doctor? It is possible that this has another cause, such as Sjogren’s syndrome. My j-pouch is also noisy. Sarah in Australia [ more ]
Deb C I ofren do a "courtesy" flush just at splashdown so odor source is removed as quickly as possible, then flush again after wiping. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Inflammation at pouch inlet
D DJJ2019
DJJ2019 @CTBarrister thanks for the input on the inlet and the backwash. I’m hoping it’s that and that nothing extends into the rest of the small intestine. The issue I have is that if the military docs do label it Crohns, they can push me to take biologics, which ends my career. So if it’s something that can be treated conservatively at first until I can retire in a few years, I’d want that. Hopefully it does not come to a head, but if it does, I can try to get a private doc to give an opinion. But... [ more ]
CTBarrister Why? It doesn't make a difference what label you slap on it, it's inflammation and needs to be treated regardless. And all the treatments are the same regardless of what label you choose, so it makes no meaningful difference. I also have inflammation at the J Pouch inlet, first seen at the 15 year mark of my pouch which is now 30 years old. Inflammation is common in this area because of backwash stool as you mentioned, and it tends to be more resistant to treatment. When I went on Remicade... [ more ]
Scott F If (when?) antibiotics stop working for me I’ll probably be on the biologics train. [ more ]
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J-Pouch ForumsGeneral Discussion
Really need some advice
A Ali_*
AMB Just read an NYT article about a study linking gut microbiome with chronic fatigue syndrome and wondered how these factors may impact those of us with pouches and our own unique stool bacteria issues. "In a study published in Microbiome , researchers recruited 48 people with C.F.S. and 39 healthy controls. Then they analyzed the quantity and variety of bacteria species in their stool. They also searched for markers of inflammation in their blood. The stool samples of those with C.F.S. had... [ more ]
athena Ali: I hate the bitterness of potassium and magnesium supplements also. But they are hidden nicely by a sachet of preportioned drink mix, the kind that comes in a little tube you empty into a bottle of water. I use one of those in a liter with a packet of electrolyte mix and it makes it much more palatable… hope that helps. The bottle kind where you add drops of flavoring also works. Here we have flavors like strawberry or raspberry lemonade as options. Low sugar versions are readily... [ more ]
Deb C I read somewhere years ago when I was diagnosed with B-12 defficiency that taking vitamin supplements can trick the blood tests for b-12 defficiency to show up normal. [ more ]
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J-Pouch ForumsGeneral Discussion
Can I take Imodium with antibiotics?
FM Former Member
New577 My SIBO was best described as having BMs and gas that smelled liked horse manure. Even Gasx could not control it. It was that nasty.😲 i still have food intolerances and IPS just like the good old days pre UC when I had IBS. Spicy food and too many nuts can really send Mr. Pouch into a hissy fit and make me crazy for about 36 hours. [ more ]
Former Member What kind of symptoms did you see improve? Did bloating and food intolerances get better? [ more ]
New577 Yes doing good thank you. I have not had any additional SIBO episodes or UTIs. but I am taking 4 Imodium per day, which seems to keep everything in order. [ more ]
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J-Pouch ForumsGeneral Discussion
Pushing it out
NuhornNuhorn
Nuhorn ❤️
New577 I kinda go thru this periodically. in the beginning , I was pushing so hard I re-aggravated an old inguinal hernia repair. I also find that too much Imodium can cause too firm of a stool. I find that the consistency of pudding or porridge is just right and the pouch will drain fine. I think my whole pelvic floor was messed up. The Gi did suggest pelvic floor therapy, but by the time I could clear the wait list, my pelvic function recovered enough that Mr Pouch empties fine most days. [ more ]
Deb C I'm female so this will only partially apply to you. I got my pouch 20 years ago and have never been able to empty well no matter how I push. The surgeon has never come up with an explanation for it. They had me do an enema, then insert a tube for stool to drain out through. This worked, but what an inconvenience! Finally an ENT nurse suggested I had a recticele. Being female, I can press inside my vagina to empty. It still sometimes takes considerable effort though. At bedtime I still do... [ more ]
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J-Pouch ForumsPouchitis
Hearing Loss - Tindamax/Augmentin
P PJ2682
DJJ2019 I get this in my left ear almost every time I use Levaquin. I think it swells something up or inflames the inside ear, sometimes leading to a bacterial sinus infection that I end up taking Augmentin for. It’s a price I pay to clear up pouchitis. I’ve also had tendon issues and muscle pulls on Levaquin. These are not uncommon. [ more ]
Scott F Hearing problems aren't listed as a known side effect of Tindamax. [ more ]
liz11 I have permanant ringing and hearing loss from other antibiotics. When I first reported ringing to my pcp... she sent me to a hearing doc and they did all sorts of tests. I had been on vancomycin and they confirmed that I definitely had tinnitus but worse that I had permanant hearing loss. They also tested and determined is was caused by that class of antibiotics. So maybe you need to go to a hearing doc and in the interim discontinue those particular antibiotics. good luck [ more ]
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J-Pouch ForumsGeneral Discussion
coffee/decaf/drip/French press vs. espresso and butt burn
S scallop
AMB Type of roast, grind size and brew method time all impact acidity of coffee. Cold brew is said to be best. For hot coffee, dark roast coffee, larger grind and fast extraction (French press perhaps. Or experiment with pour over) should be less acidic. And acid can be neutralized. I read somewhere that you can add baking soda. That does not appeal to me, but almond milk will neutralize acid in coffee also. [ more ]
scallop Thanks - as I suspected! [ more ]
Andreita I have my coffee with Metamucil otherwise it's too acidic. I'm sorry it gave you blockages. [ more ]
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J-Pouch ForumsFAP Forum
Liver and bathroom trips
BorislavBorislav
Sara Marie ❤️
SeattleJane Здравей Борислав, Приятно ми е да се запознаем. Използвам Google Translate, за да отговоря, защото не чета и не говоря български. Съжалявам да чуя за трудностите ви. Вие не сте сами. Всички ние сме минали през това и то е объркващо. Да, нормално е да ходите до тоалетната много, много пъти на ден и да сте зачервени, възпалени и раздразнени. Това може да се подобри с течение на времето, тъй като тялото ви се лекува. Тялото ви е преживяло много. Печелите ли тегло обратно? Надявам се, че други... [ more ]
SeattleJane I ran Borislav's post through Google Translate - it is in Bulgarian language. Unfortunately, I do not know how to answer him since I am not familiar with his issues. If you DO have a reply, you can reply by going to "Google Translate" and entering English to Bulgarian Here is the translation: Hi everyone, I have two questions.. For asking and helping. Yesterday I was at the PAUHOSCOPY clinic. The doctor told me the bag was very good. I only have two polyps, one is removed for biopsy, the... [ more ]
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J-Pouch ForumsGeneral Discussion
How do I know if I have a hernia?
FM Former Member
Former Member Thank you so much! Mine bulges out a tiny bit if I like lean backwards and try to push the area out, but it’s very hard. So I assume the doctors were right saying it was scar tissue but you never know. I will try doing some massage! [ more ]
Bubba1028 I had a hernia when I was pregnant but they weren’t able to do a scan bc of obvious risks to the baby. They confirmed it with an ultra sound. It bulged every time I pushed out my stomach too so it looked weird. My sister in law is an athletic trainer and has since done a lot of work with muscle massage after surgery. She worked with my other sister in law after her c-section to loosen up the scar tissue. I’m not sure how effective, clinically it is, but both said it was helpful. [ more ]
Former Member Sounds smart, thank you! Appreciate it! [ more ]
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J-Pouch ForumsHelp! Need advice now!
After Genova Lab analysis, doc is recommending Xifaxan (Rifaximin) for SIBO. I'm nervous! Any advice?
S SeattleJane
SeattleJane @Scott F Boy, howdy, you hit the nail on the head with "The word diarrhea probably causes more confusion than communication for J-pouchers." I will be mindful when I talk with the naturopath. I have thought of trying to come up with easy to understand ways to describe diarrhea - maybe in a similar vein to the urban myth that the Inuit language has 50 words for snow. I will use phrases like "end stage colonoscopy prep diarrhea" or "ordinary food poisoning diarrhea" etc. To be accurate, one... [ more ]
Scott F The word “diarrhea” probably causes more confusion than communication for J-pouchers. I’d recommend separately talking about stool consistency (e.g. “watery”), frequency, and level of urgency. J-pouchers can sometimes have more watery stool, though it should probably get thickened up if it’s more than occasional, but urgency is never really normal with a J-pouch, unless you *really* waited too long to get to the toilet. Frequency varies a lot, but a healthy, well-functioning J-pouch usually... [ more ]
SeattleJane Thank you for your thorough reply, Scott, much appreciated. Good question on the C Diff, I tested negative. I have tried finding a doc at our sole major teaching hospital, University of Washington, Seattle, but they said it was "normal" to have diarrhea with a j-pouch. The three colo-rectal surgeons who performed the original and subsequent surgeries said diarrhea was not their thing and referred me to an infectious disease doc. The Infectious Disease doc prescribed a course of Flagyl - I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
re: JPouch removal following perforation
Z Zeninu4
Zeninu4 Hi Scott. Thanks for your response. I am just trying to find out what kind of recoveries people have experienced. Yes, I was on the rectal version prior but that did not have much positive effect. I also wondered if folks who had the JPouch removed if they closed everything up. I was told it is better to leave the muscles and not close the system. I appreciate your feedback. [ more ]
Scott F It's hard to predict an individual's pouch removal experience, since each pouch will differ in how much it is encrusted with scar tissue/adhesions, and how the particular surgeon handles the procedure. The procedure is sometimes (unpredictably) technically difficult, which translates to a somewhat higher complication rate than less complex surgeries. If I needed my pouch removed I'd go to great lengths to use a surgeon who has performed the removal procedure many times, to reduce the risk of... [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone here have SIBO or dysbiosis?
FM Former Member
Former Member Very happy to hear that! I have tried many things for my sibo ( all though my health issues probably are complex and have other root causes as well), but I am going to give Augmentin a go. Please come back here and leave a comment if you find anything that works for you, I am sure this will not be the last time someone with a jpouch could use this info! [ more ]
SeattleJane Having been just diagnosed with SIBO, this is a super useful post, thank you. [ more ]
Former Member I have not tried it, maybe that’s next if Augmentin fail. The reason I am being put on Augmemtin is due to hydrogen sulfide sibo, so I don’t only react to high foodmap foods but also to beef meat and sulfur foods. So Augmentin is supposed to be good for that. I guess everyone reacts differently and what works is all dependent on what bacteria is overgrowing. Don’t think it’s one antibiotic for all, but good to know I have options. I read many on the fb who do well on Augmentin so that’s good... [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
A surgeon who has a j-pouch, and also fixes j-pouches
K Kushami
dd ❤️
SeattleJane Great stories, great information. Thank you for posting. And yes, I also wish I lived closer to the Cleveland Clinic! [ more ]
Kushami If I win Tattslotto, I might ask him to come to Australia and hold a masterclass for our surgeons here. They don’t do nearly as many j-pouches per year as surgeons in other countries and seem a bit reluctant to tackle the types of revisions and redos that are common in the US. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Anyone with a j-pouch that practise fasting?
FM Former Member
SeattleJane I don't know if it counts as "fasting", but I have been NPO for long stretches of time when I have a small bowel obstruction. If I don't have an IV going for fluid, which I didn't during the initial Covid outbreak when it was too dangerous to be in a hospital, I would sip super small amounts of clear liquid. No way could I dry fast. Liquid is the only thing that keeps me going. Clear water, broth and jello keeps me somewhat hydrated, an absolute necessity for organ and brain function. [ more ]
Scott F The evidence for the benefits of fasting is meager for people with colons, though the proponents of it exhibit serious religious fervor, and some of them write “books,” too. The risks of dry fasting for people without colons should be obvious. If you put yourself into kidney failure then then you can take some small comfort from living in an era when dialysis machines have been invented. My kidneys have proven remarkably resistant to the power of prayer. [ more ]
Former Member I thought so too, but dry fasting is much easier and allegedly has a lot more benefits. Google Sergey Filonov, russian doctor who is the leading expert on the field. You can get his book for free online. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Gallbladder Removal
Maria410Maria410
Mirsi Hi Maria. How have you fared after your gallbladder removal? I'm in a similar situation. Meeting with the surgeon next week. Thanks! [ more ]
skn69 I had mine out about 5 yrs ago...no problem at all... as for losing weight? No such luck! I haven't changed my diet much. And certainly not for the better. My pouch function hasn't changed either. Sharon [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
bile
D Darlin
SteveG I would not associate bright yellowish stool with bile. It may even be a lack of bile, a cholestasis. Or a dysbiosis or bacterial infection, which has been fixed by taking a probiotic. [ more ]
Darlin Hi Scott , A few weeks ago it started. Going bright yellow at every emptying was concerning. There had been no change in diet or anything else. After I posting the note, I went to the pharmacy and purchased the probiotic called Florastor. It seemed to stop the bile very fast. Do not know why it happened but would like to find out what happened to cause this so I may avoided it from happening again. [ more ]
Scott F How long ago did it start? Do you have any other symptoms? What about it makes it seem like bile? Are you staying hydrated? Are you eating? [ more ]
See all 3 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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