katenetWow pouch redo? Nooooo They are talking about banding it ! Like what they do with (esophageal varices ) I will definitely check it out as he said floppy pouch yes [ more ]
Former MemberCheck out this girl's channel, in her videos in the past she talked about her floppy pouch and how she needs a redo. She has cool videos. https://www.youtube.com/watch?v=KID5DnYsfEk [ more ]
Former MemberYour welcome! I needed diapers when I was sleeping. [ more ]
LittleoneThank you great advice i need to have patience i guess. Lol. I havent worked since surgery april 29th i was getting worried i would be able to go back without a diaper on.lol. retail. Is no joke [ more ]
Former MemberIt must be the Menthol that is too intense, yeah some people on here told me they do not like how the menthol gets too hot. Totally understandable. Zinc ointment makes me itch for some reason by itself. The menthol (anit-itch) in Calmoseptine helps that perfectly. Thank goodness there is stuff out there that we all can use since our tolerances are different. Glad people on here and everywhere can find what they need to help. [ more ]
Pouch2021Hi Andreita, I detailed my experience in one of my former posts so I’ll be brief. Had numerous SBOs (practically every week or so) when I had my loop. A couple were severe, others cleared on their own at home. When I had my takedown, my CRS found a thick adhesive band that wrapped around both the proximal and distal limb at the stoma site. My ileum was dilated (likely for months) above the loop. He removed said adhesion and I haven’t had an SBO since takedown. Eat a pretty varied diet. My 5... [ more ]
Former MemberWhat you said makes sense! I was wondering why this happened when the first time you had an ostomy, everything was okay. So what you said definitely answers the question! Are you okay now hon??? [ more ]
Former MemberYour welcome, I agree 100% with everything you said [ more ]
tfI am never constipated. I am thinking that overeating and not sticking to my usual diet. Summer and the opening after covid19 brought back a lot of eating out. I don't do well eating out and anxiety could of have done it. I know that I am belching more and feel nauseated after eating. I will wait it out until my ov with my GI Dr next month. Thanks for all your good responses. God Bless [ more ]
grandmaof1Nikino - I have the same problem as you. I don’t have the spasms but I have the urge to push. It’s called cuffitis. It’s so painful. I have tried 3 different suppositories and none seem to really work. I have a pouchoscopy in 2 weeks from today. I am hoping to find out again if there is anything else I can do. I’m so tired of the urge to push. I have removed almost all sugar from my diet and it hasn’t made much of a difference. I am at my wits end. If you find something that works for you... [ more ]
Former MemberQuite a few people on here have had that. [ more ]
ksrI was always told you can't get hemorrhoids if you have a jpouch. I have issues with getting cysts around my rectal area. When inflamed, those hurt like hell! [ more ]
Former MemberYou are entirely welcome, water helped me so much! Even when I do not exercise lol. [ more ]
1993SPouchI've noticed more issues at night now as aging progresses. My main gripe is the lack of sleep with getting up more than once a night. If an ileostomy is what I eventually need to be well-rested, I'll go that route. [ more ]
Former MemberI wondered the same thing actually!!! I asked a lot of 70 year old people on here if they had that problem and I believe all of them said no and I asked quite a few. I think it just depends on the person. What you said does make sense though!!! [ more ]
SteveGHaving no leakage issues even 99.x % of the day is not enough if you wear only cotton stuff. It may result in a stain not only on the trousers but also where you sit. For me it's only some liquid drops passing through very occasionally, so I wear thin women's inlays during day (glued to the back of the pants of course). It gives me a safe feeling, because since a "minor" anal fissure surgery some years ago continence is not as good as it was before. For sleep I have to wear pull ups, even... [ more ]
Former MemberThank-you!!! What I do is after I finish brushing my teeth, I spit everything out. And then i put a lot of toothpaste on my toothbrush and put it directly on my tongue and start scrubbing, that works too [ more ]
Former MemberI had something like that happen too, unfortunately it did not work for me but I hope it works for you! If it does not work, they can always put a catheter drain inside the stoma permanently until the next surgery, that is what I had done. [ more ]
AndreitaYes they opened it and pulled the intestine out more. Then stitched it back to my belly. It was very swollen right underneath the stoma. It healed and scarred so weird that food couldn't pass through anymore. Hopefully this is resolved now. [ more ]
RondaCI haven't been diagnosed with Crohns. I have a scope in a couple of week. Hopefully it will not be Crohns [ more ]
AntoneRondaC, you were diagnosed with UC before they decided it was Crohns too? I thought it was going to be all behind me when I had my colon removed, but the show just kept going under a new name. Such fun. [ more ]
Former MemberMight be worth a shot literally [ more ]
Former MemberIt me months to recover but I had complications unfortunately, I was a rare case as I am in most things lol. If I have to, sometimes I can hold it for hours although I prefer not to and sometimes I cannot hold it for long periods of time. Its hit or miss. [ more ]
Former MemberI am glad you are not bleeding anymore! Please keep us updated. Hope you feel better all the way. [ more ]
WinterberryHi, GDL900. You’re right, the second surgery to close the stoma is a small surgery compared to the first surgery creating your j pouch. My second surgery was approximately one hour. I was in hospital for 5 days recovering. Some J pouchers are in hospital for 2 or 3 days only. When I got home, it was frequency and urgency, at least 12 times a day in the first week or so. But it got better after a few months and now I am completely well and in control of when I need to use the bathroom. There... [ more ]
Jan DollarOK, first you need to understand the difference between muscle spasms in the gut and muscle spasms in other areas. There are 3 different type of muscle fibers: 1. smooth muscle (as seen in the intestines) 2. skeletal (as seen in your arms, legs and spine) 3. cardiac (in your heart) These different muscle types have different functions and properties. Smooth muscle in the gut is in constant wavelike motion. If it moves too fast or not coordinated, you get painful cramps. Anticholinergic... [ more ]
Former MemberHere is a website on spasms: https://www.healthgrades.com/r...s-and-muscles/spasms I cannot explain why this happens honestly. I know sometimes it can be caused by anxiety, stress, surgery, not exercising, dehydration, but that is about all I know about that, sorry- I hope this helps you. [ more ]
MayI prefer NOW brand or Konsyl, no additives at all just pure psyllium husk powder. Konsyl is pretty pricey unless you find it in bulk lots on eBay, NOW is super cheap. I put it in a glass of diet cranberry-raspberry juice (or diet cran-mango) so I don't want flavors. Most of all I don't want or need dextrose or any other sugars/sweeteners. I'm passionate about the stuff though. I was having passing thoughts of de-pouching when I took someone's suggestion to try it instead of the Benefiber I... [ more ]
Former MemberSome people do not look at things efficiently, especially when they are not looking for it. [ more ]
Pouchomarxhow is that possible? everything on the shelves for any type of med or whatever has the generic version right next to it.. [ more ]
katenetThanks Jan for the support and always voice of calm and reason! Working for a major hospital system has its benefits however leaving the system for care is not permitted under any circumstances. Shen is in network for office visits he just can’t actually DO anything because it takes revenue away from the hospital as he would do it in the past Cleveland and now NYC. All procedures tests surgeries infusions must be done within our system! my only recourse is to quit and I have worked there for... [ more ]
Jan DollarKate, I feel for you. Insurance navigation is the worst! The only thing I can say in their defense is that there are probably loads of people who demand out of network providers because of a false perception of better care, when in reality it is just better marketing. But, in your case it is different because you aren’t getting the same care. I can only hope that once you get your diagnosis and plan, the local guys can follow it! In regard to the UC vs Crohn’s debate, my understanding is... [ more ]
katenetThanks Scott! Without boring the heck out of everyone I have appealed multiple times. My employer is a major hospital system that requires us to get our care there and only there no exceptions. They consider themselves the best and in many areas they are. (This is not one of those areas however). As they are self insured they write the policy and the codes of pouchoscopy, stricture dilation, etc are done there. The appeals boards over the years state that I don’t HAVE to get my care from... [ more ]
Pouch2021Thanks Sarah! Yes, just as Scott said. They administer contrast material both orally and rectally and take images of its passage passively as well as when actively defecating. They also measure anal tone through manometry. I was exaggerating my concern over the potential embarrassment of the test. Awkward yea, but it should provide some useful info and honestly I’ve lost all modesty (if I had much to begin with) over numerous hospitalizations and all the procedures. I can’t imagine how many... [ more ]
Sara14Oh my goodness. Thank you, Scott. Pouch2021: Good luck! [ more ]
Former MemberPERFECT! I love how we can drive home afterwards Your lucky getting it done in offices is much better than the hospital or surgery center, for sure, that is if there is no emergency of course. [ more ]
New577Lisa, congrats on your wonderful outcome, I am beyond thrilled to hear stories such as yours. 🙂🙂😁 Sara, I understand your situation and I am so sorry to hear you are all alone. Whatever you ultimately decide to do, please to not underestimate the need for support after each step. This is major surgery and just learning to use an osteomy bag, if you require one is no small feat. As I discussed previously, surgical outcomes vary and you don’t know what if any complications might arise. I... [ more ]
Sonoma-ErinI just want to be honest with you that I never did get over it. It's a constant battle which for me is about half meds and half hydration. Yet I still chase two small children around, have two jobs one of which is an internship and just graduated grad school. It does not have to be life or career ending it just takes a lot of management and being very annoying to your healthcare providers [ more ]
Taranus-saurusPouch I take Cipro 2x day, fold in a Flagyl combo to double up the effect every two to three weeks. Also take Entyvio every 8 weeks……..It is hit or miss by the day ! Especially when off the Flagyl. I try to stay positive. Although, I fight depression as well. It may not always show. But, I feel damn glad to be alive !!! I get to watch my kids grow up ! They get to have a dad in return. I endure for all those who never had this chance. Never got a second lease on life. I cry when I need to... [ more ]
Pouch2021Totally agree. Once pouchitis has been confirmed with scopes and the patient has an accompanying set of symptoms, abx without a scope makes sense. I think Shen’s point was symptomatology is often unreliable as other pathology can cause the same symptoms as pouchitis so in the newly diagnosed or in those who stop responding to their typical 2-3 courses of abx per year, then it’s time to scope/re-scope and possibly do other testing. High deductible plans are tough. My brother’s is 5k for... [ more ]
Pouchomarxyeah but if you have pouchitis a few times a year , scopes sometimes take a while to have done or a lot just cannot afford the cost of them. A pouchoscopy done at Cleveland clinic under sedation would cost be about $2000 after insurance.. I have high deductibles, which are $3500.00 individual or $6900.00 family, so I would rather do a course of antibiotics first that cost me about $5.00 . If it doesn't help then I would look into getting a scope. [ more ]
LORI726Despise flagyl. Shen put me on tindamax at one point. Might be worth checking out if tindamax can be used instead. [ more ]
Chook2I work in a factory and find somedays worse than others as I start work early and only eat a banana for morning break before having a sandwich 2 hours before hometime.I found lockdown bad as well as the public toilets were closed.I see alot of non jpouchers go more than me and some even hide in the toilets when they have no work.Im usually in and out quick or go during my breaks.most employers are just glad you showed up for work. [ more ]
Ryan138I am a utility worker and have to rely on public bathrooms every day. Covid has made it very hard as even fast food places closed their bathrooms. It slowly is opening up but some how I have made it work as I am 1 of the lucky 9%ers that goes 14 times a day (most are after noon). [ more ]
KmillerI have an office job. I came back to work after my takedown right into Covid and our team was working from home. Now we've decided to stay remote, so I have not had to go back to the office and won't in the future either. [ more ]
Former MemberGlad your well hone! Happy 4th to you too [ more ]
JanW2Hi again, my last pouch was a K pouch and I had a lot of issues with intubations and having to do that at least 12 times a day in my case. From prior surgeries I had a lot of adhesions that added to the problem and caused a lot of pain throughout the abdomen and entire pelvic area. I was very limited on what foods I could digest that could exit through the catheter.Also much difficultly in emptying my bladder, had to contort my body to empty myself of both waste products. Weird, but I’ve... [ more ]
Former MemberAlso Doug, I have spoken to quite a few people on here that go as much as Ryan and I, a lot of people that go as much as us never get pouchitis, my belief is because were emptying bacteria constantly, just a theory though. Maybe us going that much is a blessing [ more ]
Former MemberTotally agree Ryan! You always stay ahead of the game! [ more ]
Former MemberYour welcome Doug! It really does not matter what time I stop eating, I go 2-3X and even sometimes more. That is the part I hate because less sleep ages the brain. But I just keep positive like Ryan I would say count your blessings. I love how the J-pouch wakes me up, the bag never woke me up. And plus my J-pouch is a free alarm clock lol. [ more ]
JoeJoeI been averaging 10 times a day, but don't seem to be emptying all the way out and sometimes when I go, I don't go much at all. Rice kind of constipated me after I ate it for three days strait. I eat my first meal around 10:30am to around 11:30am, then I have another small meal at around 4-5pm then a small snack like a plain bagel around 6-630pm, then don't eat anything till the next day, so it give the jpouch around 14 hours to kinda rest. Everyone is different and everything is trial and... [ more ]
GGPExcellent! Glad your doing well. Are you taking anything for Butt burn? Little and often is a better way for a pouch I reckon, what times are you having your meals? How many times a day are you going Currently? next step for me is pouchagram on 30th july [ more ]
Chook2I find eating less or eating burgers help reduce trips but mainly it's down to less eating.worst for me is pizza and sometimes rice [ more ]
Chook2If you are having spasms try nortriptyline.emily Parris talks about it in her one year jpouch video on YouTube at the 6 minute mark. [ more ]
KmillerIt is early on and should improve. I don't do metamucil as it increased my frequency. I've tried it several times, same result every time. [ more ]
CurlyI had my j-pouch surgery in 2012-13, and in the years after that I had a number of painful blockages that sent me to the hospital. The gastroenterologist in charge there, who is also a surgeon, had been keeping an eye on my frequent hospital visits and finally recommended surgery to remove adhesions, in consultation with my regular gastro doctor. It was laparoscopic, just an hour or two, shorter and easier than he'd expected. Since then I've had no obstructions at all. So, don't be afraid of... [ more ]
Jan DollarI have been a big coffee drinker nearly all my life. I switched to half-caf as I got older. I was please to recently read that coffee has been found to be protective of the liver! So, actually, it is recommended! https://www.cnn.com/2021/06/21...-wellness/index.html Jan [ more ]
Scott FPouch inlet strictures aren’t particularly suggestive of Crohn’s. It’s an area that can be chronically inflamed a bit, and that’s enough (along with some bad luck) to cause a structure. [ more ]
katenetYes thank you so much! Very helpful I’m having a pouchoscopy soon so we will see if this is something they can do. I’m worried about Crohns but I guess it’s more semantics. [ more ]
Scott FHi, @katenet . It sounds like you have a stricture that is narrowing your pouch inlet, and causing some backup behind it that’s making the small intestine a bit bigger (dilated). I’m guessing that your GI will recommend dilating the stricture, which might include sedation and might take more than one session. Did you have other questions or concerns? [ more ]
Scott FVisbiome is completely different from Florastor - Visbiome is a mixture of probiotic bacteria, and Florastor is a strain of yeast. They serve very different purposes. Unless you’re taking just one or two caps of Visbiome it’s a *very* potent probiotic, and your system needs a chance to adjust. If you follow @Former Member’s advice to introduce it slowly you’ll probably start to tolerate it well, but there are no guarantees. Visbiome is likely to reduce the frequency and duration of pouchitis... [ more ]
Former MemberYou can try starting slowly. It usually has the opposite effect for me, it firms up the stool in the morning if I take it at night. [ more ]
Former MemberI think you should give Scott a private message about this. He knows about Visibiome. [ more ]
Former MemberAlso a good thought for the future, if antibiotics do not work, you can also try biologics, just another possible option. Hope you feel better love! [ more ]
Scott FIt sounds like your pouchitis may not have fully resolved. It may be worth another course of a different antibiotic, perhaps for a bit longer. [ more ]
Former MemberWHat does your diet look like and how often do you eat??? [ more ]
Brenda lynne davisI also get gas real bad, have you tried gas x ?I also drink something hot like tea or coffee and lay on your left side for some reason that helps me good luck [ more ]
New577Update 6/22: I met with GI doctor this morning. Here are the highlights in no particular order: 1. Scheduled pouchoscopy for early August 2. switching me to visbiome probiotics for 2 weeks 3. the iv antibiotics I am taking thru Sunday for my uti can cause GI distress. He feels once that is over I should feel better. 4. eat whatever I want 5. Continue Imodium before breakfast and dinner plus two more around 7-8 pm. 6. Will re evaluate in two weeks, might try canasa as an interim solution... [ more ]
Former MemberYour welcome, hope you feel better. [ more ]
Accept ItThanks for this information. I have the exact issues with sleep and have been taking ambien for over 6 years. I will give this a try and report back. Lack of sleep is an awful feeling. [ more ]
Former MemberSounds cool! Closing my eyes and counting works, reading a little bit until I get tired. Classical music [ more ]
Scott F@Spooky I’m so glad that a *treatable* source of the trouble was found! You should be up to your old tricks in no time. [ more ]
Pouch2021Thanks for the update, Spooky. It’s food for thought if I continue to have the gurgling/bloating and certainly if I (please let me not jinx myself) develop an obstruction. [ more ]
KmillerAlways a relief to get some answers! Hope you can get everything resolved soon. [ more ]
Doug KGosh - what are the chances of finding another poor guy that has a J Pouch and was recommended to soak in a bleach bath. I am kinda that guy. I got MRSA - a super bug that infected my stomach skin post surgery and I sat in a bleach bath every night for ten nights because the antibiotics were not working. My J Pouch was fine created but not hooked up. I did the bleach baths with my leaky loop ileostomy and it was fine. I can’t see why the J Pouch would be effected. Maybe if you have butt... [ more ]
Former Member❤️
Jan DollarI can’t see the connection. It is not as if you are doing bleach enemas or drinking bleach! Jan [ more ]
Pouch2021Definitely don’t use calmoseptine on vaginal mucosa. Total different type of skin from the perianal area—way more sensitive. The heaviness could be from a prolapse as Jan said (vaginal, “rectal” or uterine). And the burning could be anything from an infection (despite a normal urine culture) to vaginal atrophy and dryness (not uncommon in post- menopausal women). If vaginal atrophy, they can prescribe a topical estrogen cream often with good results. Having more vaginal moisture also reduces... [ more ]
Joey AThank you very much, Jan. (The gel that was prescribed was Lidocaine. ) [ more ]
ian337I had The pillcam twice and it helped confirm crohns in my small bowel after they thought I had UC. This was in 2004 and 2007 or so and the technology for it then required a huge bundle of hard drives, wires and batteries. I looked suspicious wearing all of it but walked a mall and it passed within just a few hours even though they made me wait much longer. I couldn’t go home since I was two hours away so I walked that mall. [ more ]
GerdMüllerHi, I got one last week. Did you get one after 5 years? [ more ]
JHendrixFor what (if anything) it's worth, I've found that I had to go into the hospital with the loop obstructions but have not had to with pouch partial obstructions. I was fortunate in that I used to be able to go right to the ward and bipass the ER which made it much less daunting. [ more ]
SpookyDefinitely agree. It's sometimes difficult to know when to go to the ER when you're dealing with partial obstructions. I've had several that have passed at home. I generally judge by pain and duration, but if I start having any nausea or vomiting I will go regardless, or of course if I have a fever. On the last occasion when I did go, I was in the ER for hours awaiting x-ray results, only to be told "things don't look too bad" and was discharged home to continue fluids and monitor for any... [ more ]
jbeeAlso, thank you to everyone and anyone for a reply. I don't have any family or friends to turn to for support and a level head, so I really appreciate any help. [ more ]
jbeeIt's less than a teaspoon, like I'm not gushing or anything. I've had several regular non-bloody poops and then just now a bloody one but it is a lot less blood. It's bright red in colour. No pain, no urgency, no abnormal gas or smell. Just really freaks me out The surgery I'm having tomorrow is for my throat. [ more ]
JJAI used nothing for 7 years post-pouch and did just fine. Then I developed a fistula and surgery for that damaged my sphincter, rendering me functionally incontinent. Using Metamucil and Imodium before meals helps me avoid leaks/accidents. Later I developed chronic pouchitis-I still take the above to manage incontinence but layered on antibiotics and Imuran to treat the pouchitis. I'm not sure that metamucil or Imodium would help prevent or treat pouchitis BUT if you had a low-level,... [ more ]
Jan DollarI have been taking loperamide since my surgery in 1995. The dose has been reduced over the years as my gut adapted, but I still take it. I have never had issues with it. Metamucil, however, was a problem for me. It caused too much gas discomfort. Jan [ more ]
Scott FHow much are you using? I take one full dose prepared as described on the package with breakfast and dinner, and it has a modest but useful effect for me. If I wanted a greater effect I’d take it with lunch, too. I tried the capsules but they didn’t seem to mix adequately during their trip through my body. The wafers worked well but added more calories than I wanted, so I’ve been using the powder for quite a while now. How thick are you trying to make your stools? Solid, formed stools aren’t... [ more ]
Doug KI feel for you. That sounds horrible. I had similar problems with my old colon. WHATEVER I ate gave me pain and cramps and diarrhea. Flagyl should help if it’s pouchitis- and Cipro is really good for that also. Have you had a scope to check inflammation? I assume from your post your rules out pouchitis. If it is irritable pouch syndrome, like IBS, I used Lomotil and Levsin and Bentyl. Things used for spams and cramping. I would put Levsin under my tongue and it worked wonders. [ more ]
Former MemberBINGO! I believe that is the problem, not eating often/enough. I heard and read about that, not eating often/enough can potentially cause the problems you are dealing with. [ more ]
VitalI have tried FODMAp diet for help. I eat potatoes, rice, bread chicken boiled eggs, and. canned vegetables I only eat once a day. [ 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).
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The Crohn's & Colitis Foundation of America, Philadelphia, Delaware Valley chapter, is located at 521 Bustleton Pike, Feasterville, PA, 19053. Tel: 215-396-9100
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