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J-Pouch ForumsGeneral Discussion
Loperamide - fda approved or generic
B Bubba1028
Scott F @Bubba1028 “Not evaluated by the FDA” definitely does *not* mean that you can’t mess it up. Plenty of OTC meds and supplements can kill you if taken improperly. Nevertheless, loperamide is pretty safe if you don’t misuse it horribly. [ more ]
Bubba1028 Thanks Jan. I will talk to my doctor to see what he can do. He did call in the script but CVS Hust didn’t fill it. I hate opening the blister packs. It’s horrible and def not cost effective. I’ll give my insurance a call to see what they can do as well. Blue cross is great insurance so I don’t see why they can’t/won’t cover it. 240 pills for $10 - wow!! I did look up the FDA thing again and it said “this product not evaluated but the FDA” so I just misunderstood. I mean you can’t really mess... [ more ]
Former Member ❤️
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J-Pouch ForumsHelp! Need advice now!
Severe bloating
GSGS
Kelli Hang in there @GS Ive had a few of those in my life as an alterated individual. It's a tough road, no doubt, but this too shall pass. No pun intended Stay strong. [ more ]
Former Member I am sorry honey, I hope everything gets better, I will keep you in my prayers. [ more ]
Nikino I’m so sorry- sending positive vibes & healing vibes your way. Please feel better. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis and meds
L La-Te-Da
Former Member I am so sorry about your sister, she is in a better place. I bet she is proud of you [ more ]
Scott F One of the best summaries of probiotic research I’ve seen is the CareFirst Blue Cross probiotic policy. I posted the updated location/navigation here: https://www.j-pouch.org/topic/...4#663214202801915104 Note that the research on “VSL #3” was on a product that is now called Visbiome. The current product called “VSL #3” is a slightly different formulation (that’s the one I use, for insurance reasons). [ more ]
La-Te-Da I guess I should share my story as it is not your typical case. My sister was killed in January of 2013 and that first Christmas after her death, I had some blood in my stool. It became worse and I attributed it to stress of the anniversary and Holidays but went to my doctor anyway. I was prescribed Flagyl and it went away. The following year at Christmas (2014) the blood in the stool returned with fatigue etc. but I again attributed it to stress and I was traveling out of state. It did not... [ more ]
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J-Pouch ForumsGeneral Discussion
Blockages
KelliKelli
Former Member Awesome! Some tips I do to prevent blockages is walking around after I eat. Drinking water: before, during, and after ever meal. And chew chew chewing. Hopefully this helps [ more ]
Former Member ❤️
Scott F ❤️
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J-Pouch ForumsGeneral Discussion
Anal/sphincter pain
E ElSur
temoty https://www.j-pouch.org/topic/...4#674897424499595564 Hi! yes, my Doc gave me something topical to soothe the fissure. She thinks it's a fissure that started external and can go internal causing that inner pain in rectum area. My pain did go away...... Wish you well soon. [ more ]
Nikino @temoty thanks so much for reviving the old post. I just read (googled) on the syndrome mentioned by Winterberry. It sounds like my issue. Now to take action, see if I can lessen the issue. I wish you well and healing. [ more ]
Nikino ❤️
See all 16 replies...
J-Pouch ForumsHelp! Need advice now!
Blockage? How long can I wait
KelliKelli
Former Member Definitely! I am glad things worked out too! And your welcome hon [ more ]
Kelli Thanks Lauren. I have done that in the past and yes I agree on most cases but this one was different. I guess my recent visit left me scared. I’m glad things worked out but I appreciate you taking the time to answer me😊 [ more ]
Kelli Thanks Scott. I am at home still feeling drained but my blockage has been clearly slowly since this morning. I’m in Arizona. I looked to you dedicated members for my solution and it worked. This is a first for me so thanks again. I feel I’m out of the woods. Just to be safe I am continuing my clear liquid diet until I feel like myself again. I’ve gotten used to being hungry and drinking tons of fluids. You’re definitely an angel to me 😊☺️ [ more ]
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J-Pouch ForumsGeneral Discussion
Need diet advice/help
SJ Stephen J. Thompson, MD
Stephen J. Thompson, MD Thank you [ more ]
La-Te-Da I had all three surgeries in 2015 and found that it's trial and error. I will say that I work in mental health and it is a very busy job so I have to eat small meals for lunch and shake for breakfast so I am not running to the restroom. I can eat anything but notice that it really has to be in moderation. For example, a whole ribeye steak will cause me pain and keep me up at night but half or a quarter of it, and i will be just fine. I also notice that mushrooms do not breakdown so I need to... [ more ]
Chook2 Everyday I wonder what to have for dinner ,burgers have made me fat so now I'm trying stirfry with good results. [ more ]
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J-Pouch ForumsPouchitis
Too many bowl movements, Cramping in my pelvic area, difficulty urinating
T Tavofl61
Kelli Hi Tavo, Sorry to hear you’re struggling. In my 18 years with my j pouch, I’ve had many periods of pouchitis The first 4 years were similar to you. I finally tried eating clear liquids and soft foods (mostly yogurt and egg whites) a lot. I also cut way back on my carbs and just literally ate tiny meals about 2-3 times a day. I supplemented my diet with clean high end gummy vitamins. It really helped over the next year to let my pouch settle. Once I felt better I kept it up anyway. I got... [ more ]
Kelli ❤️
Former Member Your welcome [ more ]
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J-Pouch ForumsPouchitis
Remicade making pouchitis worse
K Kgendron
Scott F I’m sorry you had that reaction, @Kgendron . Remicade is more prone (than other biologic medications) to cause antibodies to be produced because of the mouse protein involved. Stopping and restarting Remicade has been controversial for a long time. Good luck with Stelara! [ more ]
Jan Dollar Glad to hear you are doing OK now. Anti Remicade antibodies are a bummer! Hopefully they will be more proactive with preventing antibodies with Stelara. Jan [ more ]
Kgendron So to update everyone on Thursday July 8th I had a massive reaction that put me in the hospital. I found out a little over a week later that I have antibodies to Remicade. I am doing ok now and they are working on an approval for Stelara. My pouchitis flare is going down again and I definitely think it was the remicade that made things worse. Thank you all for your help! [ more ]
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J-Pouch ForumsGeneral Discussion
Gastric Sleeve
R rod1
age Hey Rod1 was wondering if you went through with the sleeve? I am curious to know the outcome! [ more ]
vanessavy I know! If only someone scoped my bum before I had my gut cut out. It was great in the beginning then the honeymoon is over and you have to work. I form SIBO due to the gut part being removed, Shen said without that part of the stomach there to help digestion, bacteria forms more in the gut and trickles down into the pouch. Keep your stomach, eat paleo and do crossfit ;-) [ more ]
TE Marie vanassavy, I had no idea you had to deal with this too on top of everything else. You've got a great fighting spirit and I admire that in you! [ more ]
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J-Pouch ForumsGeneral Discussion
Aspirin
B Bubba1028
Former Member Sounds great hon A lot of doctors/nurses take their time calling back or they forget, I always got to stay on them like cheese on macaroni lol. [ more ]
Bubba1028 Thanks, I’ll be sure to take it with food. I always try to follow that stuff. As for the appt I figured he’d prob call me back sooner or fit me in during lunch- he’s totally done that before if it’s been an emergency. I’m not fussed bc I honestly don’t want to drive down there or feel the need to go. I’m just surprised the nurse didn’t call me back! Lol in the meantime I’ll just go with the flow. He’s in touch with my other doc and if anything changes I’ll let him know 😉 [ more ]
Jan Dollar Bubba, my take on what your GI is up to is that he just wants a follow up with you. Trust me, if there was an urgent need to see you right away, he would be able to fit you in between other appointments. This is why sometimes you sit in the waiting room 30 minutes or more past your appointment time. It is because they worked in an urgent case or someone else needed more than their allotted time. Just make sure that your GI is aware of your med changes. Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Urinary - or something else? - problem after pouch removal
n/an/a
n/a Well, my urogynecologist "didn't feel comfortable" with the results of my MRI which was not exactly clear, so she sent me to see a colorectal surgeon (who, along with another CR doc there, created my jpouch in '93 - talk about full-circle). After spending oh, $5000 or so on ultrasounds, MRIs, office appts., other testing, he did a quick $40 co-pay exam, and knew immediately what the issue was: "the patient has a chronic fluid collection in the deep pelvis just posterior to the vagina and a... [ more ]
n/a Thanks for sharing, katenet. I was able to see the PA who did a few tests and thinks I may have a small fistula. Will probably be doing some imaging to see what we can see. I was given some pelvic floor exercises for the urinary thing, but it's not certain what's going on there. I'll keep you posted if/when anything else comes up. [ more ]
katenet I am a jpoucher with chronic pouchitis. I just started having overflow incontinence. Just like a slow dribble. i also have an appointment at the urogynecologist in a few months [ more ]
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J-Pouch ForumsPouchitis
Failed J-pouch, needs removal
J JamieS
Former Member Your welcome Keep me up to date Blessings be with you hon [ more ]
roseviolet Jamie, I searched "vitamin D for recovery after surgery" and a bunch of articles come up. Apparently D3, which is what I take, does prevent/limit infection and promotes quicker healing. (D3 is utilized by the body better than D2.) I was healthy going into surgery but I'm a believer that D3 has amazing benefits. If your surgery is soon, maybe ask doc about taking 5000 IU daily or 50,000 units several times a week to boost your level, depending on your current D level. Below 30 is too low. The... [ more ]
JamieS Rose, thank you so so much for the detailed description of what you went through. It’s just what I was looking for. Besides the ileus, it sounds like your recovery went well. I really look forward to not having all the pouchitis symptoms and no more risk of cancer. I can’t wait to feel good again! Since I already have the ileostomy, the big thing I worry about is the butt surgery. I’m not supposed to sit at all for two weeks post-op but my husband bought me a standing desk so I can hopefully... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis? Gastroenteritis? Something else?
V VB_93
Jan Dollar Call your GI. At least in the US they will often prescribe a course of metronidazole or ciprofloxin based on described symptoms alone. No need for an urgent appointment and poking around in painful places (yet). Another thing to think about is the possibility of an anal fissure, as your new rectal pain sounds a lot like one. It is often associated with straining at liquid or formed stool. Hermorrhoid cream can help while you get this sorted. And, no, probiotics will not treat what you have... [ more ]
Former Member Your welcome. I personally think you have pouchitis but the only way to know for sure is to see your gastro and get scoped. I would reach out to gastro and book an appointment. Sometimes calling daily can get you seen sooner in my experience. People can cancel randomly, so i usually grab the cancellations. [ more ]
VB_93 So I’m beginning to think what I have is indeed pouchitis. The only contrary things that lead me to think otherwise is that my stools have formed up and I’m not seeing any blood. However, the tailbone pain, urgency and nighttime frequency are all pointing to pouchitis. Please let me know what your thoughts are on this. [ more ]
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J-Pouch ForumsGeneral Discussion
Prednisone and perforation
FM Former Member
Jan Dollar I had to edit the title of this topic. It was unnecessarily alarming. For future reference, I would like people to refrain from making topic threads of random stuff, especially with a “headline” that intends to raise alarms and anxiety in people. It is fine to post something that is new information, and to give appropriate advice. But, in this case, the information is not new (it has been known that prednisone and similar drugs in high doses increase the risk of upper GI ulcers and... [ more ]
Former Member Yeah well everything has risks nowadays. Sometimes its worth the risks. [ more ]
BK 123 Doesn't sound quite right - would be awful counterintuitive and extremely risky to prescribe it to someone when they are going through a flare. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hernia Repair
GaylaGayla
Allison I had a hernia repair with mesh and that was in 2010 and thankfully I've done well since. [ more ]
Mary O I think I'm an outlier but here's my story. During a hernia surgery in 2001, the surgeon used mesh. Within a year, I had stabbing abdominal pain. A few months later, I had a hysterectomy. Long story short, the gynecologic surgeon was appalled at the mesh ... said it had sharp edges (hence the stabbing pain). He took it out while he was in there. Can't prove it was the result of mesh but I've never been the same since. [ more ]
Doug K I would talk to my surgeon about this. I had a softball size hernia and they fixed it (so far so good). They mentioned pig skin I believe as an alternative to mesh to hold muscles together under my skin. I of course don’t want to render a medical opinion, but I would not jump to a conclusion that your skin would “die” until you speak to your surgeon. My surgery was 11 hours and I had no skin issues. [ more ]
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J-Pouch ForumsGeneral Discussion
Bump on rectum/anus? Pea sized
Lou PhillipsLou Phillips
Allison I have the same thing. My GI says it's a "skin bridge". She said it's the way things have healed even though I've had my pouch for 20 years. I have her check it each year. She said it can be cut off by a surgeon if it really bothers me. I freaked out when I found it too. Of course your mind goes to the worst thing especially with what we've been through. [ more ]
Sara14 ❤️
ksr Lou, what did you find out? I have had bumps around my rectum, some right on the rectum. They end up being cysts for me. Very painful when inflamed. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Surgery on ovaries when you have a J pouch (advice needed)
O OscarThePouch
susbo @OscarThePouch no lasting effects on my pouch or pouch function after the surgery, thankfully. I totally agree and hope you don't end up needing surgery after all! [ more ]
Mary O I had my colon removed in 1995 and in 2002, my gynecologist found a growth in one of my ovaries. It presented itself like it was cancerous and after a few scans and scary appointments, the doctor (head of gynecologic oncology surgery at Northwestern Memorial in Chicago) deemed it to be non cancerous but wanted to remove it asap. I was 38, had decided against having children and for various other reasons, including that I had already had so many abdominal surgeries (2 for the total colectomy,... [ more ]
OscarThePouch Yeah that is sort of my fear. That conversation you described sounds like the one I had. I am pretty sure I DO have scar tissue and possibly adhesions because I have before. They caused bowel obstructions years ago. Did you have any lasting changes to your pouch behavior after that operation or did things go back to normal after your bowels woke up? I hope I can find someone. Really what I hope is that my cysts shrunk and I find out at the next check that I don't need any surgery. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Sinus tract or normal healing
P Pouch2021
Former Member Okay keep us updated, hope things get better. I will keep you in my prayers. [ more ]
Pouch2021 Next steps are PT and a trip to NYP to see Bo Shen about the sinus tract. Who knows. I’ve experienced way worse pain than this but I’m just tired of the persistent discomfort. It wears on me and makes a long day at work that much tougher. [ more ]
Former Member Your welcome, wishing you nothing but the best [ more ]
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J-Pouch ForumsGeneral Discussion
Exercise
N Nikino
Michael Nicole, To each their own, but like Jaydog I'm also a proponent of working out fairly hard. Been lifting free weights for many years and added kettles w/o any of the issues you mention. I'm sure there's zero science behind this, but exercises that strengthen our core -- abs, obliques, spinal erectors, glutes -- are critical ... not only do they connect our upper and lower masses they house/protect our rather unique internal geography. Sure, let your own body guide you, but my viewpoint is... [ more ]
Former Member Be careful taking NSAIDS, that can irritate the pouch and cause pouchitis. [ more ]
Nikino Thank you all for your feedback. It really helps & means a lot to hear about other people’s journey . I think it’s my anatomy, DNA, stress reactions both emotional and physical (workouts). I try to live through the pulsation. I think I need to rest more the days I push my workouts a little bit & accept how it is for me/ not push too hard. I don’t know if it’s the workouts (I try to do 30-45 6 days a week) or my jpouch life/ me! My primary care doctor described it as like a “migraine”... [ more ]
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J-Pouch ForumsGeneral Discussion
Hypo glycemic
A Allison
Former Member I forgot to mention: Maybe a endocrinologist can help a lot with that. This is extremely rare but there could be a very small tumor on the pancreas that makes you produce extra insulin- resulting in low sugars. I forgot what that test is called but if you describe what I previously said, the endocrinologist should know what its called. Hopefully you do not have that problem but its a low possibility. [ more ]
Jan Dollar A single test does not say a whole lot. But it does mean more tests are needed. Jan [ more ]
Former Member I have had thatt too, I just eat every 2-3 hours [ more ]
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J-Pouch ForumsGeneral Discussion
Amount of times a day going to the bathroom after jpouch surgery?
J JoeJoe
Chook2 I'm working 48hrs a week but if zi feel sick I take a day off. I've noticed I can work harder now but I also choose to take more days off.I read my body and mind more and take time off if I'm getting run down. [ more ]
Former Member ❤️
CTB23 I am 5 years out from takedown and probably average 5-8 times a day, depending on what I eat and whether I take Lomotil during the day. I rarely get up at night to go. I have occasional leakage, nothing big. I went back to work part time about 6 weeks after surgery. However, I was almost 61 at the time and also didn’t need to work full time. [ more ]
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J-Pouch ForumsGeneral Discussion
turmeric
BA Bill A
Jan Dollar I took ibuprofen for many years post op at high doses for my arthritis. Eventually I had to stop due to liver inflammation. Later still I developed chronic pouchitis. Still, I take prescription NSAIDs from time to time for flares of my arthritis. My point? Never say never or always. Perhaps you can take some NSAIDs without a problem. If you want to try it, just be alert to symptoms and just discontinue it if you have side effects. They are reversible. As for tumeric, it is fine to take. I... [ more ]
Former Member Have you thought about getting a night guard for your teeth? [ more ]
Scott F Most of us can take NSAIDs in *limited* quantity and duration, but it’s wise to be careful with them. There are dentists who specialize in the fitting of oral appliances that can help with TMJ. Perhaps a consultation with a dentist like that would be useful. [ more ]
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J-Pouch ForumsGeneral Discussion
Blood tests
C Chook2
Former Member ❤️
Chook2 After my first surgery they were worried about my liver and blood count so wouldn't let me go home for three weeks and then I had to have a blood test once a week for two months before things started improving.I also just drank homemade st mark's solution for two months.which was made of water,salt,baking soda and glucose. [ more ]
Former Member Good idea, thanks! Glad your well, might be a god idea too for them to check electrolytes too. My pediatric gastro did that along with Vitamin D [ more ]
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J-Pouch ForumsPouchitis
CBD
RondaCRondaC
Still Standing I use a CBD cream from Trim Healthy Mama called Chillax. I put some on my abdomen at night (about 1/4 teaspoon or less). I think it relaxes my pouch and helps me sleep better - but not relax it to the point of causing incontinence. And since I am at the menopause stage, I find it helps me with night sweats. I costs around $45 a jar and you can only get it from the THM store. [ more ]
RondaC Thanks, Portia [ more ]
Portia @RondaC, CBD will not treat pouchitis. It’s no substitute for Cipro, flagyl, or biologics. However, I have found CBD very helpful for the insomnia that has long plagued me and it also relaxes me with no sedative effects. So while it won’t treat pouchitis, it can have other beneficial effects—at least that’s been my experience. (I’m fortunate enough to live in a state where medical cannabis and related products can be purchased legally.) Check with your medical care providers, but mine are... [ more ]
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J-Pouch ForumsGeneral Discussion
Breakthru
N New577
New577 Not exactly I am having both good and bad days I am trying to figure out when to take each of the medicines to attain optimal effect. I think I have pouchitis but surgeon wants to wait until September to perform pouchoscopy. I was scheduled for august 5th with GI but surgeon vetoed the test i have cipro in the house, I might just try it and see if it helps but to answer your question. I am doing better, but I want only good days and no bad days. [ more ]
tf ❤️
Pankaj new577 how r u doing now ! everything is fine now ? [ more ]
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J-Pouch ForumsPouchitis
Ayahuasca
A Adam21
TomH I have a pouch now but tried it before I lost my colon. I went to Peru on a healing trip with a small group. I went on the trip not feeling great from UC and worsened while there. I was only able take Ayahuasca at the first ceremony , the first of several nights. The first ceremony was of minimal potency to introduce the body to it. It disagreed with me and they advised me against taking it any further.. In fact, it is standard for a normal individual to have extreme GI upset quickly after... [ more ]
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J-Pouch ForumsHelp! Need advice now!
cyst near rectum
ksrksr
Johnny J-pouch Hello All, I have been battling this issue for atleast 4 months now with a total of 4 surgeries to attempt to drain these areas. I have had a SETON installed for 2.5 months now as it appears that the origin might be a fistula. Have also been on a variety of antibiotics to attempt to help cope with infection. It is my understanding that draining these abscess is the best way to fix it. Unfortunately, after being admitted to the hospital this past weekend, I am not sure how this is all going... [ more ]
ksr Not acne. They are cysts. I have FAP and have had over 30 cysts removed. A symptom of FAP. They don't go away. Verified by both colorectal surgeon and general surgeon. My colorectal surgeon is in Dallas so I see a general surgeon in Oklahoma City. [ more ]
Former Member Are you sure its not acne bumps??? [ more ]
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J-Pouch ForumsGeneral Discussion
Heat / dehydration
T TomH
TomH Thank you everyone for your thoughts and suggestions. I sounds like this is as good as it gets when it comes to hot weather and the bodies regulation of fluids. ‘I’ve tried many combinations of different fluids at different rates and always end up in the same bad way. Avoiding exercise and exertion on hot days is ideal but lately, my work has had me having to push through when summer’s heat is turned up. Bummer. [ more ]
Former Member Your welcome. and yeah the prednisone thing is pretty common. I would mention pottassium citrate to the doctor and maybe see what he says? I hope the calcium works hon. [ more ]
Bubba1028 I only take calcium citrate bc I need calcium and the urologist told me the calcium citrate is better than the calcium carbonate. I guess the carbonate component builds up and creates stones vs the citrate component. See, I need the calcium bc of good old prednisone has done a number on my bones. Idk if I’d do the potassium citrate without asking first. But I do appreciate the suggestions everyone. [ more ]
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J-Pouch ForumsGeneral Discussion
Amoxicillin and Flagyl
Bent-ArneBent-Arne
Former Member Glad your better hon [ more ]
Bent-Arne After half a day with Amoxicillin and Flagyl I feel some difference the positive way number of bathrooms trips has gone down and the burning inside the anus is almost gone.. Hopes up 😀 [ more ]
Scott F If you have good insurance you might want to try rifaximin (Xifaxan) at some point. It didn’t work for me, but some folks report good results, and very little is absorbed systemically, so the side effect profile is excellent. It’s expensive as heck, though. Please let us know how the amoxicillin works. [ more ]
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J-Pouch ForumsGeneral Discussion
Small Bowel Obstructions after J-Pouch
R rod1
Former Member DAMN!!!! i am sorry to hear that, I wonder how that happened??? Your resilient [ more ]
ksr I forgot to mention, one obstruction was caused by my small intestine wrapped around my stomach strangling it. I almost lost 1/2 my stomach. The doctor said if they waited any longer to operate, I would have died. That was a rare rare issue. All the other issues have been caused by scar tissue pinching in or strangling my small intestine. When I have been cut open, you can't see any organs. Everything is covered in scar tissue. The doctors have said my issues are due to the scar tissue. [ more ]
Sonoma-Erin Usually 6-8 hours. Percocet slows digestion which in some cases is actually good because some of that hard chunky stuff will actually get digested. Also without the pain meds I would never make it through any of them. They have decided that this routine is definitely better than me having to go to the ER all the time. [ more ]
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J-Pouch ForumsGeneral Discussion
July 10th was my 6 year vegetarian Anniversary with my J-pouch!
FM Former Member
Former Member Yeah that is pretty common, I was in a facebook group years ago and most people said the same things you said. I think the vegan means will help a lot. Gardein has great meals. Daiya has vegan cheesecake that I think you will love. [ more ]
Former Member Thank-you! That means a lot me some people do not like what I write on here but I always get happy when someone says they like what I write, thank-you so much for your beautiful words [ more ]
Li__ ❤️
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J-Pouch ForumsGeneral Discussion
Probiotic
SimonwSimonw
Former Member ❤️
Scott F Visbiome is most like (and perhaps is identical to) the product that got decent results in clinical trials. Confusingly this was done under the name “VSL #3.” The current VSL #3 product is a knockoff, pretty close but not identical (they paid a substantial legal settlement to the Visbiome folks). I use VSL #3 because my insurance covers it by name, and it’s not worth rocking the boat. VSL #3 is somewhat hard to find. There is essentially no reasearch that demonstrates the efficacy of a... [ more ]
Pouchomarx I thought vsl3 was bought out by visbiome a few years ago? [ more ]
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J-Pouch ForumsGeneral Discussion
Adrenal Insufficiency
Sonoma-ErinSonoma-Erin
Jan Dollar Sorry to hear this. Sadly though, sometimes this secondary cause of insufficiency is permanent. Glad to hear you have the right care. Jan [ more ]
Sonoma-Erin Yes! Thanks I have had an endocrinologist with me for years. They still say they have hope for me getting off it but it's been years and still no luck. Production is zero to one on all the tests. [ more ]
Jan Dollar If you are years post op and still on steroids, I sure hope you are under the care of an endocrinologist. This is serious stuff and you need an expert to determine your needs. I did not suffer with adrenal insufficiency, but as a nurse I know the serious implications. Jan [ more ]
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J-Pouch ForumsK-Pouch Korner
Best Catheter ?
K KQB
Former Member Awesome, hope it works for you [ more ]
emme Many thanks for all the info. May soon try either the Marlen #15030 or #15285. I'm currently on the search for a good catheter replacement for discontinued 'curved' catheter product Medena M8731 (Astra Tech) of which i've been using for 33 years. [ more ]
KQB Thanks for the great info. and the item #. I will look into that. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Frequency and Butt Burn in Pregnancy (oh and Vaginal Delivery Q)
L LizAdair
Matchaqueen Please read my posts from the past year or so. It sounds a LOT like what I went through. For me, it started at the very end of my pregnancy and lasted about a year and a bit afterward. In the end……it was a newly developed egg intolerance. I can’t even begin to tell you the hours spent crying in pain, the multiple inconclusive doctor visits, the frustration. I was no longer able to tolerate eggs which I was having every single morning. Eggs in baked goods were fine…but scrambled and other... [ more ]
Former Member Your welcome [ more ]
SZ That’s great to hear! Congrats on your new baby!! I also had my daughter via c-section in December. She’s a healthy 5 month old now! I requested to have a vertical incision on my tummy using the existing scar and it took a while till I felt like I have any core strength again. But it healed all well and I’m happy with my decision. I‘m breastfeeding now and finding it hard to stay hydrated well. I’m always thirsty and my body doesn’t absorb more than a certain amount. If I keep drinking I... [ more ]
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J-Pouch ForumsGeneral Discussion
Malabsorption
A Alaine
Alaine Thank you, I’ll talk to my doctors [ more ]
Jan Dollar Wow! That is truly bizarre! You may have to test one sugar at a time to see which one offends. If it is all sugars, you may need to get a referral to a pancreatic specialist, as it sounds like a form of exocrine pancreatic insufficiency that is selective for amylase. Also, pancreatitis needs to be ruled out. This totally is NOT normal! https://medlineplus.gov/pancreatitis.html Jan [ more ]
Alaine It’s not sugar insensitivity, it’s sudden inability to tolerate any sugars. They make me violently ill. Vomiting, dizziness, inability of my legs being able to support me. It’s all very strange, my doctors are baffled so far. [ more ]
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J-Pouch ForumsGeneral Discussion
Anybody with a J-Pouch get a Whipple procedure ???
MarsMars
Jrt1352 Yes, I had my j pouch surgery in 2016 and a Whipple November of last year after cancer was found in my duodenum. Fortunately it was found very early and had not spread. The whipple is a big surgery with a tough route to recovery. I’m feeling better every day but still struggle with gi issues. I did not hesitate to have the whipple as it was literally a life saving “cure” for me. I would get a second and third opinion before having the whipple surgery. If you have to have it done, please make... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Pre and Probiotics
JA Joey A
Former Member Glad to hear it! [ more ]
Jan Dollar The primary risk of long term antibiotics is an antibiotic resistant C. difficile infection. Then there is the risk of tendon and/or neurological damage with Cipro and Flagyl that increases with dose and longer courses of treatment. Like prednisone, the thinking is trending towards use of antibiotics in the short term because the long term risks are too high. Jan [ more ]
Joey A Hi Jan, Can you explain what you meant by the risks of antibiotics was too high? I'm in the middle of a "battle" between my colorectal doc who I've been with since 1994 and my new GI doc who is young and isn't an expert on pouch people. He believes in antibiotics, but she does not. She wanted me to do the FODMAP diet which I tried but it didn't make much difference. I was on Remicade for about 2.5 years and then developed a reaction and stopped. That was about 6 years ago. My colorectal doc... [ more ]
See all 13 replies...
J-Pouch ForumsPouchitis
Afferent Limb disorder
K katenet
Former Member Hope it works hon [ more ]
katenet Wow 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 Member Check 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 ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
i m new to j pouch
P Pankaj
Former Member Your welcome! I needed diapers when I was sleeping. [ more ]
Littleone Thank 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 Member It 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 ]
See all 17 replies...
J-Pouch ForumsHelp! Need advice now!
Second blockage in a month
A Andreita
Pouch2021 Hi 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 Member What 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 ]
Sara14 ❤️
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Nausea and vomitting
tftf
Former Member Your welcome, I agree 100% with everything you said [ more ]
tf I 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 ]
Former Member Is it caffeine free??? [ more ]
See all 8 replies...
J-Pouch ForumsPouchitis
Pouch rinses, the best my pouch has felt for 19 years
coloradoguycoloradoguy
Not your average gal! ❤️
Mrs P ❤️
grandmaof1 Nikino - 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 ]
See all 17 replies...

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William J. Johnson
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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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