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J-Pouch ForumsGeneral Discussion
Abdominal gas7
N Nancydiane
PouchLogic If you aren't up for walking, stand beside your bed and "March" until you are up for walking. I ended up with an ng tube and terrible pain until I started doing this. [ more ]
Sara Marie When I was in the hospital recovering from j-pouch surgery they had me up and walking pretty quickly. I didn't get a choice! I'm sure it was for the best. [ more ]
Mrs P Hi, Id have to agree with Scott. It’s a hard surgery to recover from and it will take time. Walking is really important to regain your strength. Try taking a loop around your main floor of your home once an hour. It will get easier and easier and then you can go farther and longer. Eventually go outside to walk. All the best to you! [ more ]
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J-Pouch ForumsGeneral Discussion
Xifaxin for a Reasonable Price
ktakta
Vinnie_B Another place you can get this at is at the Canadian Pharmacy. It seems to be even cheaper on there. https://www.truecanadapharmacy.com/drug/xifaxan Now this one is not on there, but another good site is Mark Cuban drugs. If you need to use Mesalamine, this is the place to go. You can get 30 for $31 including shipping. https://costplusdrugs.com/ [ more ]
kta I have been on antibiotics for 20 years now. Originally, it was just Cipro, but now I rotate Cipro, Augmentin and Xifaxan. The latter has always worked best for me. Once I retired and saw how much I would have to pay, I kinda flipped. I can afford $175.00. [ more ]
New577 Thanks for the info. i have never been able to secure it when i had private insurance and the Medicare drug copay is insane. thankfully, 14 days of Bactrim successfully treats SIBO when it occurs. [ more ]
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J-Pouch ForumsGeneral Discussion
Dr. Landmann?
M mremp
Jessi I know this is several years late, but I highly advise staying AWAY from Dr. Landmann. He ruined my jpouch. I will have incontinence for the rest of my life thanks to his surgical error. I had to have a complete pouch redo with Dr. remzi to fix his mistakes. I’ve heard from a doctor that other patients of his are also undergoing a redo. Hoping someone will see this in time and avoid a lifetime of agony. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Adhesions
S sudie
Sara Marie Acupuncture and moxabustion might help. It would take time. [ more ]
Jaypea Unfortunately scar tissue is tough and fibrous. Massage to break up adhesions would be extremely painful and potentially cause damage to the bowel itself if the practitioner was able to massage past the muscle wall to get to the adhesions themselves. [ more ]
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J-Pouch ForumsPouchitis
Long term Cipro for Pouchitis
HeatherF21HeatherF21
CTBarrister I rotated Cipro and other antibiotics continuously for over 20 years until I finally went on Remicade 9 years ago. Since going on Remicade, I have had to take antibiotics far less frequently- maybe 2 or 3 two week cycles every 6-8 months. I have treated chronic pouchitis for almost 30 years, and my overall status and quality of life is good. I did have to have a stricture dilated at the J Pouch inlet in 2021, but it's been OK since. [ more ]
AMB Returning to the original question concerning Cipro experienced. I was on it fairly steadily for about two years, punctuated with trials of XIfaxan, flagyl and Tinidazole alone or in combination with the Cipro. Tinidazole was ok for a while but when I upped it to a treatment dose I developed vertigo and light-headedness. The Cipro was my most reliable drug, and it really impacted consistency. I was happy to go less frequently, and almost "normally," bit I think some of the inflammation and... [ more ]
Karenchase I take Cipro in rotation with other antibiotics. I find I can take a 2-3 week break between cycles, and I like to do that. I can’t be sure, but I believe I have developed neuropathy in my hands and feet due to extended Cipro use. It’s uncomfortable but not debilitating. This disease has always been a merry go round of symptom and side effect management for me. [ more ]
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J-Pouch ForumsOstomy & Skin
Blockages
MysticobraMysticobra
LORI726 Hello! I agree that blockages are horrible. Many of my blockages have occurred post op, but I did have a partial blockage a few years ago with my ileostomy. I don’t remember what I ate (which is surprising) but I guess I haven’t eaten it again! The only other advice I can give is to apply a heating pad. I think I read that somewhere online. Not sure if it helped or not but I will try anything to avoid the dreaded NG tube. I completely understand where you are coming from with the no more... [ more ]
Mysticobra Thanks all. I'm still being careful. Just a small update. No biggie. Still sore. I would only guess only four days out of the block it's still healing or shock. I am leaning toward shock only because it sounds better. Healing means damage. Trying to be light about the situation while still being serious in paying attention to it. Have a good day to anyone reading this. Richard. [ more ]
Mysticobra That is part of what I needed to know. Just part Thank you. The rest I'll find out through a gastro Dr probably a mri first Second. If they don't see anything probably a scope. Never had my small intestine scoped through the stoma. Not worried about that. Plenty of scopes the other way. Lol. Reason as I may have said. That I'm going through the process of getting a new gastro Dr is to ask questions and probably procedures. I like everyone else here have been through so many Dr appointments... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Prostate MRI ?
Jeff807Jeff807
Pouchomarx yeah, 18 months ago my first PSA was 1.97. I had another one done a few weeks ago and its now 2.78 and considered elevated. Urologist wants me to get another lab 2 weeks from now and if it has gone up again he talked about getting an MRI to see if anything looks suspicious. He knows about the jpouch and cant do anything "in the garage". lol. Said if its rising and MRI is suspicious he will send me to Dr Kaouck within my Cleveland Clinic network and if i need a biopsy they could do one... [ more ]
New577 Jeff, you are much more braver than me. i will let no one up up there besides my surgeon and GI doctor. if i ever need a prostate mri they are going to have to perform it without the rectal coil. NFW, am i ever taking a chance like that! [ more ]
Jeff807 Didn’t realize just an enlarged prostate will cause PSA numbers to rise, even with no cancer present, very interesting 🤨. Found out this MRI they’re doing on me is just with & without contrast, I was a little worried about them using a balloon covered probe and going far enough into my garage to damage my jpouch. I’ll never forget my surgeon telling me “nobody goes in your garage but me” lol, but it’s been 7 years and I’ve relocated and now I make sure anyone doing any work in the... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchoscopy/biopsy results
C Cb2009
Pouchomarx SOME ULCERS IN POUCH ARE OK AND NORMAL ESPECIALLY AT THE SUTURE LINES. also in a pouch, the biopsies will always show some inflammation, very normal. They usually only prescribe antibiotics if you are having symptoms.. [ more ]
AMB I was told by my doctor that microscopic inflammation is the norm and treatment is based on what things look like through the endoscope and clinical assessment. In other words, some inflammation in the biopsy is to be expected and if I don't have symptoms, probably nothing to worry about. I don't have a cuff, though. Your report looked good but mentions chronic active disease in the cuff. I always understood that it was important to treat active colitis (back when I had a colon.) So perhaps... [ more ]
New577 In my non medical expertise opinion I think you are ok. I also have yearly scopes with similar results. i too have chronic UC of the cuff. Because I had high grade dysplasia in the rectum, I still take one Canasa suppository daily, to keep the cuffitis in check and prevent a reoccurrence. I also have a slight narrowing of the anastomosis, which the GI dilates with his finger, and tells me it’s clinically insignificant. The important question is how do you feel? Pouchitis, Cuffitis, SIBO and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Possible blood? I need advice
L lassemarco
Rico Hello Marco. How was your appointment at surgeon? Did the bleeding stop? Or there was any other cause? Im in very similar situation right now. 3 weeks after and three weeks before my appointment at hospital. [ more ]
lassemarco Thanks once again for your reply. It is really nice to talk to someone with similar experience. And sorry for my late reply. I'm from Denmark, so I also think there is quite a time difference between us. I see red every once in a while now, but definitely not every time. Thank you for your words, they are motivational for me. With my ileostomy I went to the bathroom 2-3 times a day. Even though I'm glad to hear that my current situation is good for a pouch so young, I don't think any of this... [ more ]
Winterberry Wow, 4 to 6 times is really good for a pouch so young! You are only a month old. In the same timeline, I was going 12 to 15 times in a 24 hour period. It was pouchitis and it was solved with a 14 days' dose of Cipro. Pouchitis usually includes extreme frequency and urgency, and leakage, sometimes constant. See if red shows up again after having non-red food and drinks. It could also be slight irritation of the soft tissue in the rectal / pouch area that is now holding and expelling acidic... [ more ]
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J-Pouch ForumsPouchitis
Scope
J Jen24
Scott F If your doctor understands that you have (or may have) chronic pouchitis and needs to sometimes monitor the treatment effectiveness or confirm the diagnosis then scopes may be warranted. If your doctor doesn’t understand chronic pouchitis then you probably need a new doctor. [ more ]
New577 I would align with a GI who has a thorough understanding of our situations. My doc and his nurse practitioner will always prescribe antibiotics whenever my SIBO flares up, usually every 5-6 months. They understand we know our own bodies, and that we are suffering and will treat on symptoms. [ more ]
Jen24 Thank you. I didn’t understand the rationale from my doctor. I have had the symptoms of pouchitis for years so I believe I have chronic pouchitis. I have been treated with Flagyl and Cipro with good results but upon finishing the symptoms return. [ more ]
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J-Pouch ForumsHelp! Need advice now!
inflammation
chili123chili123
Frank R I agree with chili123. Call your doctor. My ileostomy closure and reversal was only 11 months and I have had 3 bouts of pouchitis. They prescribed Flagyl and Cipro without seeing me based on my symptoms of going to bathroom greater than 18 times daily, sense of urgency like you, inflamation of butt due to constant diarrhea. [ more ]
chili123 I may try that. I've never had anything to this degree in regard to it not going away. I'm grateful it's not a blockage bc that seems to be what I normally deal with. I mean my butt is so incredibly sore....can even sit without being uncomfortable. [ more ]
Scott F It could easily be pouchitis, though there are other possibilities. Have you tried calling your doctor’s office and telling them you’re in acute distress? At least you might be put on top of the cancellation list. [ more ]
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J-Pouch ForumsGeneral Discussion
Gas
N Nancydiane
Scott F I don’t know what “Tylenol gas” is, but walking is helpful to move gas along and *very* helpful after surgery. Assuming you can walk safely you would likely benefit from as much walking as possible. Good luck, and I hope you feel better soon. [ more ]
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J-Pouch ForumsGeneral Discussion
getting push back from GI on Antibiotics
Furious PouchFurious Pouch
Scott F If they haven’t read specifically about chronic pouchitis then the antibiotics seem foreign. The younger docs have also been more exposed to biologics during their training. I did recently have an appointment with a new, older GI, and he was comfortable until I mentioned that I’d likely need biologics if/when the antibiotics fail, and that’s when he referred me to an IBD specialist. [ more ]
Momof2 Yes! My new GI doc is anti-antibiotics. My doc of 30 years said, “some people just need them.” Is it a generational thing? Some new doc seem afraid of their own shadows. [ more ]
CTBarrister It's also known as Entyvio. It's a biologic which, as with the other biologics like Remicade, Humira, and Stelara, are a second line of treatment after antibiotics use doesn't work or becomes less effective over time. I was on chronic antibiotics due to pouchitis for over 20 years (cipro and flagyo and others in rotation) but over time the inflammation becomes more resistant to them. I went on Remicade in 2015 and have done fairly well with it since. Entyvio is usually considered after... [ more ]
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J-Pouch ForumsGeneral Discussion
Collagen and Colostrum
M Momof2
Momof2 I think it’s one or the other. THANKS! [ more ]
Sara Marie I have been using collagen peptides for a while. I haven't noticed a difference, but maybe I'd be even more withered-looking without it! I take it for the bones and ligaments because I have annoying hypermobile joints and plenty of osteoporosis in the family history. I found out I have osteopenia in one thighbone and added choline in the mix. I haven't found out if that has helped yet. Guess I'll take it until the next scan! Getting old ain't for sissies! Is it recommended to take bovine... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Botox?
B Brian
Scott F Botox is used to treat stubborn anal fissures by forcing the anal sphincter to relax and stay relaxed. I don’t know if I’d treat ulceration that way, though, without at least a theory about the cause. Maybe see if the GI thinks cuffitis is a possibility (and treat that, if it is)? [ more ]
Pals Have never heard of Botox. Please keep us posted how it works. [ more ]
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J-Pouch ForumsPouchitis
Crohns Disease, Pouchitis, or something else?
D Derrick
Derrick Steve, No I can’t other than the antibiotics were very sporadic over a 7 month period. I had them 4 times over that time and none were consecutive. So I guess it could have been the antibiotics but the entyvio has been taken consistently. [ more ]
SteveG Sorry, I meant to say cuffitis instead of pouchitis. [ more ]
SteveG Can you be sure it was Entyvio that helped with the pouchitis and not the antibiotics treatments? [ more ]
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J-Pouch ForumsGeneral Discussion
Inflammation of Pouch
D Derrick
Derrick No they started me with entyvio and that was it. I did a few rounds here and there of antibiotics but last one was 4 months ago. And for me it is important to figure out if it is pouchitis or crohns/crohns of pouch because if I ever need to get the jpouch removed, that can determine if problem is gone since it’s just pouchitis or if it’s crohns it’s still around. Treatments right now it may not matter really, but, if jpouch os removed, that distinction will really matter. [ more ]
SteveG The wording is not so important unless it helps to get a therapy approved. My inflammation is called "colitis indeterminata" for now. As long as there are no fistulas or other Crohn's associated complications I wouldn't care how they call it. I had neary every scope without sedation and so I could see how the pouch and the ileum looked on a screen myself. Usually the pouch was less inflammed than the end of the small intestine. Maybe that helps to avoid cuffitis. Taking antibiotics once a... [ more ]
Scott F Cuffitis and pouchitis really are different. Although they both end up with inflammation, it’s very common for a person to have one but not both. Even though we don’t fully understand the mechanisms we know that they aren’t the same, so it’s not surprising that they can respond differently to a medication. The nature of Crohn’s-like disease of the pouch is still an area of research, and even the terminology is in flux. I don’t think you have to assume it, though, to explain inflammation of... [ more ]
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J-Pouch ForumsPouchitis
Rinvoq
K katenet
Karenchase I have been taking Rinvoq for a few months. My GI prescribed it for symptoms consistent with “post colectomy crohns” and it looks like the signs of inflammation have been reduced, according to a recent scope. It doesn’t seem to have any side effects, but it doesn’t really help my chronic recurring pouchitis. I still take cycles of antibiotics for that. I hope this helps. [ more ]
Glenys D Hi Kate, I've been on Rinvoq for 3 months, and I'm very happy with it. Previously, I was on Infliximab infusions every 5 weeks. The problem with Infliximab was I was only symptom-free for 3 weeks. With Rinvoq, firstly it's a tablet, so I'm not going to the hospital every 5 weeks for a few hours. Secondly, I'm not having to wait 2 weeks until the next dose, because it's a daily dose. I hope it goes well for you too! Good luck! Glenys [ more ]
SteveG I tried Xeljanz a few years ago. Another so called JAK inhibitor. I don't think you should be worried too much about side effects. On the other hand it didn't help me with chronic pouchitis either.# In December I started with a new biologic called Skyrizi. I hope this one has more success. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain
N NurseKaren
NurseKaren Thanks Scott, Interestingly, Lomotil has become hard to find. Stool consistency varies and doesn't seem dependent on what I eat. I have come to the same conclusions as you so will try to pay attention and not let it get worse at this point. It seems a little better today. And I have tried metamucil in the past but it makes me nervous. I have so many health issues, I hate for my pouch to give out at this point! Thanks again [ more ]
Scott F If I’m reading this correctly the degree of pain is pretty closely associated with stool consistency, suggesting (perhaps) that straining may be what’s triggering the pain. Something like an internal hemorrhoid might behave that way, or (less likely) a developing prolapse could do that. Under the circumstances it might be worth backing off the bowel slowers, though you really don’t use them much. Do you take fiber, like Metamucil? Fiber could help manage stool consistency, but I’d start with... [ more ]
NurseKaren Hi Scott, Thanks for the questions. It's been a week today. I've been on flagyl since last Thursday. It's a lot better, but yes, the consistency had changed from almost watery stools all the time to a hard to pass consistency. Not hard by a normal persons stool but harder for me. It starts when I notice that I have to 'go', pain during the movement then it hurts for a few minutes after, like something is still there, trying to push out. It goes away for a couple of hours and then the cycle... [ more ]
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J-Pouch ForumsK-Pouch Korner
Valve Concerns
D dpol
skn69 Hi, a couple of thoughts here, 1. your pouch may have a slight twist making it smaller and when it fills the valve tends to clamp shut. 2. If it is a living collar type of K pouch (mine was converted for the stability about 12 yrs ago) then it automatically fills the collar like a doughnut and clamps it more shut (grammatically wrong but biologically true!) 3. a dropped pouch can fill and sit on the bladder. When the bladder fills it pushes it back up and makes it harder to get the catheter... [ more ]
Kim S Grandmaof1- no, we aren’t talking about a j pouch, we are referring to an internal continent reservoir which is a K pouch or Kock Pouch named after the original surgeon. There is also a similar internal reservoir called a BCiR. These two internal pouches are similar. They are drained a few times a day by inserting a catheter into a type of stoma on the lower abdomen and through a valve (made of small intestine) and just drained into the toilet. You decide when you are going to drain it. In... [ more ]
grandmaof1 So after reading everything I have a few questions. Are you inserting into your rectum? My new surgeon said he had one other patient do this and it works great for her. But I’m not sure I can do this. This jpouch has taken to many years of my life away. Sorry if this doesn’t relate to a jpouch. Thank you. [ more ]
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J-Pouch ForumsGeneral Discussion
Feeling down/defeated
B Bubbapup
skn69 I am so sorry, I know that this is not just a pain but a quality of life issue. I might sound like I am forever repeating myself but I am the pom-pom girl for K pouches. Most of the people who get K pouches have either failed J pouches or considerable quality of life issues with them. Yes, it is major surgery again, and yes, many of us are just sick and tired of all of the surgery and yes, again, it is not a 100% guarantee, but most of us after the initial surgery and recovery period end up... [ more ]
Bubbapup I haven’t tried the FODMAP DIET. I do take a probiotic with dinner. I was told by my gastro that I can pretty much eat anything I want and that I’m not different than anyone else. I made an appt to meet with a dietician/nutritionist to get more info. I’m down for the count again tonight - severe stomach pain. It feels like the type of stomach cramps you get before you get diarrhea - like before I had my pouch. I literally didn’t eat anything today to cause my pain. Cheerios for breakfast,... [ more ]
Glenys D Hi there, Sorry you are having such a rough time! I've had times when it's been like you describe, but I found the FODMAP diet turned things around. Then one doctor told me that after all my surgery, I was likely to have an Irritable bowel. So I've added probiotics at night, which help. Hang in there! I hope you have the energy to try some of these suggestions and find small improvements to your energy and gut ache. Glenys [ more ]
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J-Pouch ForumsGeneral Discussion
Fluid leaking from bellybutton
A Angel41
skn69 It could be a small abscess behind the belly button that just never reabsorbed. It needs a place to go so it seeps out (a good thing because a closed abscess, even if steril can be very painful). If you put some pressure on either side of the belly button and press down slightly, does more fluid come out? If so, that is exactly what it is, a pocket of fluid (if it is clear and odorless then it usually isn't infected but if it is greenish, thick or has an odour then it could be infecting or... [ more ]
Former Member Not to worry?! I would ask a second opinion, I would ask a colon surgeon to be honest. It is up to you but I would ask a colon surgeon to be on the safe side, there is nothing to lose with a second opinion. [ more ]
Angel41 It's all good. I actually asked my doctor about it and he said not to worry. [ more ]
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J-Pouch ForumsGeneral Discussion
Type 2 Diabetes Medication
A azpoolboy
Winterberry My endocrinologist has me on Invokana. Causes the sugar to leave my body via peeing. Also Diamicron which is supposed to help me release insulin so the sugar isn’t floating in my body. If you’re diabetic you know what I mean! And finally Januvia. All three of these meds I take once a day in the morning. I also take a statin before bedtime to help protect my heart. I have been diabetic for seven years, diagnosed six months before my cancer diagnosis leading to my j pouch. My way of supporting... [ more ]
azpoolboy My insurance covers it. [ more ]
Bill A I very much appreciate your replies. I wanted to use the Libre 2 program as well. Can you tell me if your insurance covers or do you pay out of pocket. [ more ]
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J-Pouch ForumsGeneral Discussion
Daily BM
D Derrick
CTBarrister Incomplete evacuation to me is a sign of pouchitis. It was once explained to me that the inflamed pouch loses some of its elasticity, becomes more rigid and doesn't work as well to evacuate completely. The solution is to get the pouch healthy and elastic once again so you can evacuate completely. I would suggest a 2 week blitz of 1000 mg cipro and 1000 mg flagyl daily and then see how you are evacuating. Stop the Imodium immediately once you start the antibiotics because they will thicken... [ more ]
Scott F It can be very difficult to sort out what’s going on when you change more than one thing at a time. OTOH, if you find a set of things that work for you it’s hard to argue with that. I think some of us may use bowel slowers excessively. The bulk has to go somewhere, and the small bowel is a poor place to store stool in any quantity. I use Lomotil at bedtime to adjust the timing of my bathroom trips, but I know it won’t change the overall quantity of stool or the number of times per day that... [ more ]
Sara Marie ❤️
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J-Pouch ForumsGeneral Discussion
Have you experienced J-Pouch Failure?
E elissamarie1971
CTBarrister Elissamarie, Because I was short on time with my earlier post, I neglected to mention that I too have had a stricture at the J pouch inlet, which is very common in older pouches due to backsplash stool and resulting pooling and SIBO at and above the inlet. You start with the anatomical and mechanical fact that the J Pouch has no backsplash valve like the colon, and over time there is a bacterial/inflammatory wear and tear on the inlet that likely causes a stricture. Due to backsplashing... [ more ]
elissamarie1971 I have an appointment with my surgeon today; he's going to take a peek at the fissure and anything else he can see with an office procedure. My concern today is the pain from the fissure. But I will certainly discuss all of this with him. I appreciate all of you! [ more ]
Scott F A pouch inlet stricture can feel like difficulty emptying, even when the pouch is actually empty. Pressure on the ileum (while it struggles to fill the pouch) and pressure on the pouch both just feel like pressure. Perhaps the stricture needs to be carefully dilated? I agree that you may have had untreated pouchitis all along, but that’s a guess. It’s possible that a simple course of antibiotics will help immeasurably, but that will only be sufficient if the stricture is still letting stool... [ more ]
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J-Pouch ForumsGeneral Discussion
Poucoscopy prep
M MJFMJF
MJFMJF Thank you everyone for this information. I will use alot of your ideas and forego the big time colonoscopy prep. Mary [ more ]
SteveG My prep were two enemas of about 150 ml each (together in sequence), shortly before the exam. I was scoped at least yearly for about 20 years now, most times without sedation. If you just don't eat after dinner the day before, it needs more cleaning during the exam an more gas is blown into your bowels. [ more ]
Frank R Had my 1st pouchoscopy last month by the Cleveland Clinic surgeon who did the 3 stage operations for j-pouch. There were no instructions for cleaning out the j-pouch other than not eating past midnight. Contacted the office and they confirmed no prep is necessary. Apparently, when I was under sedation they used air to view the pouch. They never told me this was going to be done. Hours later my stomach was extremely swollen, painful, until I was able to pass large amounts of gas. I would... [ more ]
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J-Pouch ForumsGeneral Discussion
Prune Juice
H Hazel
Hazel When I feel like a need with some help in going to the bathroom and as you all know sometimes trips can last for hours that’s when I’ll take about 6 oz. It has not failed me yet. Within 1 hour I’m going to the bathroom - yes it can be very loose but it will be over after only a few trips to the bathroom. Thanks! [ more ]
Teresa M Hazel, thank you for your reply! I will give the prune juice a try. [ more ]
Aimc Teresa, prune juice has a bit less sugar than grape juice. I only drink about 4 to 6 ozs., but I don't drink it everyday, only when I feel things are getting slow. [ more ]
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J-Pouch ForumsGeneral Discussion
Low Anion Gap
Strawbale CharlieStrawbale Charlie
Strawbale Charlie Hi Scott, Thanks for your reply! It's good to remember that the "normal" range for many of these tests isn't always what most of us function within. The normal range for the anion gap is 3-9 mmol/L and mine is at a 2. The anion gap is the difference between positively and negatively charged electrolytes in your blood. I will discuss this with Dr. on next appoint and share any info on here. I should also refrain from Google searches about it because that is a rabbit hole. [ more ]
Scott F Are the abnormal values significantly out of range, or just a bit? The fact that this isn’t a new finding makes it likely that all is well - the exact normal range limits aren’t as meaningful as we sometimes think. If you are peeing several times per day and your urine is light colored then you are probably hydrated enough, but most J-pouchers do have to treat fluid intake as daily medicine. [ more ]
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J-Pouch ForumsHelp! Need advice now!
It happened again leakage/sex
T tulsamom
tulsamom Thanks everyone!! [ more ]
Meatball I get the store brand, either from Target or Walmart. My personal preference is to mix the container that has sugar with the container with artificial sweetener, half and half (one is too sweet, one not sweet enough). In the morning, I take the equivalent of 1 1/2 tablespoons, same after dinner. I don't mix it with water, I just scoop it into my mouth a little at a time, and chase it with a swallow of water. I take so much I find it's easier and quicker than mixing it with a lot of water, as... [ more ]
Scott F Metamucil only has one active ingredient (psyllium). Some people get gassy from it, some get reduced gas, and some get neither. The optimal dose for each person is individual, but it’s easy, inexpensive, and low risk to experiment to find what’s best for you. Start with the directions on the package and vary from there. [ more ]
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J-Pouch ForumsGeneral Discussion
Probiotic worth the hype?
B Bubba1028
Aimc Pouchomax, did you ever get an answer on this study? [ more ]
douglitke The few clinical trials on probiotics (at least VSL/Visbiome) were all very small, making the conclusions suspect. They did not show any benefit in solving pouchitis, but did show some inprovement in preventing it. That suggests that if the clinical trials are to be believed then stopping probiotics may not cause any difference for you. But maybe you get pouchitis more often. But again the trials were small, so maybe the effect is not worth the cost. VSL/Visbiome are not cheap. I hope... [ more ]
Pouchomarx i just shot him an email so i will let you know what he responds... [ more ]
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J-Pouch ForumsGeneral Discussion
Creatine
JK Johnny K
BK 123 Also, reading up on the cycling now - it's beneficial to take a break so your body doesn't become accustom to the need for supplementation ie. maximizing results. [ more ]
BK 123 Yes I believe the frequent urination is from the increased water intake. And you’re correct about cycling off due to the kidneys. [ more ]
Johnny K Hi BK, I was going to take creatine primarily as a supplement for weightlifting as well. But, when I started reading up on it I found that it's actually good for people as they get older as well (I'll be 60 this summer). My main concern was how it would affect me as a J-Poucher. It's good to hear that you haven't had any negative side effects except for the frequent urination. Do you think that it's caused by the creatine or because of how much water you're drinking? Do you cycle on and off... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Lime cucumber Gatorade flavor. Is it considered ok to mix miralax w is it considered clear liquid?
Len78Len78
AMB Hi Len My gastroenterologist friends always said to avoid red or purple Gatorade/ juice/ jello or ice pops the days before the procedure. Other colors - like lemon-lime green Gatorade, are ok (I was never sure about which side of the line Orange Gatorade fell. Your post got me thinking of my last prep. My written prep instructions were to buy one 64 oz or two 32 oz bottles of Gatorade and one 8.3 oz bottle of miralax. I couldn't find 32 oz bottles. I don't think they make them any more. So I... [ more ]
Len78 The first nurse the main one of the dr said I should see yellow water with 2 miralax capfuls with just after consuming a couple glassfuls bc there’s no colon and I’m doing clears the 28th one day before pouchoscopy i really don’t know what approach to use I have the 4.5 oz empty enema bottles ready. im worried about stool sneaking down from higher up stream wit I don’t do miralax I still want to do an enema 99 mins before arrival/pickup to hospital [ more ]
Len78 I have 10 bottles of glacier cloudy cherry white flavor of zero Gatorade 28 oz bottles ill use along with drinking tea a black coffee or two and chicken broth every hour the day prior i stocked up certainly on the Gatorade, the nurse for my gi said to put 2 capfuls per an 8 oz cup of whatever I’m drinking every 10-15 mins of miralax another nurse must think I’m coloned she said mix 32 oz if miralax with 7 capfuls of miralax at 6 pm the evening before the afternoon day of piuchoscopy I have a... [ more ]
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J-Pouch ForumsGeneral Discussion
Some Blood in Urine
C capper
Pouchomarx For several years i have had non visual blood in my urine but microscopic. Urologist did a cystoscopy twice over a few years and found nothing suspicious in my urethra or bladder. so no idea [ more ]
SteveG In my experience pushing hard is of no use. Pushing normal is enough to empty the pouch (given that your stool is not too hard), which has a normal volume of only about 300 ml. That's not so much, especially if there is also gas, and it's less than the volume of a rectum at the end of the colon that we had before the pouch. I prefer to wait some time and lean forward, backward and to the sides, so that my small intestine keeps working and pushes some more stool forward into the pouch by... [ more ]
Scott F I used to take a shuttle bus into the Bronx; between the bad roads and bad suspension the story was that a number of the people on that route would develop blood in their urine after a couple of weeks. @capper I also try to empty my pouch pretty well, but I try to avoid pushing hard. Even though it has been okay for you so far it really can cause problems. Be gentle - it’s the only body you get. [ more ]
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J-Pouch ForumsGeneral Discussion
Liver & Entyvio
Y ytcrockpot
CTBarrister Unfortunately this can happen not only with Entyvio but other biologics and immunosuppressants. Both Imuran and Methotrexate messed with my liver chemistries and I had to go off both. It's unlikely you have any liver damage but be advised these liver enzyme issues are a risk with this entire class of drugs, that's why you go for blood tests. My standing order is for blood meds quarterly. Good luck with the hepatologist, hopefully no damage done. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pudendal Neuralgia- does anyone have experience with it?
S SurvivingUC
grandmaof1 Thank you for the support. I just feel like I can’t get a break. I have had problems with my jpouch from day one. But this pain and urge and spasms are absolutely unreal. I will always remember what my surgeon said. You need A or B and they both suck. U of M never went over anything before or after my surgery. Looking back what a mistake. I love this site!!! I got more answers here then even my own GI dr. I’ll post what I find out. Thanks again. [ more ]
SurvivingUC @grandmaof1 I am so sorry to hear what you are going through. Wishing you luck for a successful appointment and a pain free outcome. [ more ]
Sara Marie @grandmaof1 I'm so sorry to hear about your pain. I hope you find some relief ASAP. [ more ]
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J-Pouch ForumsGeneral Discussion
trouble with bananas
KeepMovinOnKeepMovinOn
dd I had a blockage from a banana. I use to be able to eat them often. But just recently had a terrible bout after I ate one. Your body is always changing and I might have had increased inflammation. Luckily Miralax helped work its way through. But since then I can’t even look at a banana without getting sick. Everyone’s condition is unique and I would assess more on a personalized basis [ more ]
New577 Interesting. Pre surgery, bananas gave me heartburn almost immediately, but cooked plantains were fine. these days, they still give me heartburn and I only can eat a small portion of plantains. if I eat fried chicken, jpouch gets very upset. So fried foods in general have to be taken in small amounts, or else. Another food I love on the no go list. [ more ]
LV2Hike Even though this is a very old post from 2015, and it's 2024 now, I was happy to find it when I googled "is bananas bad for Jpouch". I too have noticed over the years that I get worse after eating bananas especially if they are very ripe. Yesterday I ate a super ripe banana in the morning and had a terrible day with very little control, where I even had a little poop accident. Luckily I always wear a sanitary pad, prepared for those occasions. I don't know whether it's the higher sugar... [ more ]
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J-Pouch ForumsGeneral Discussion
Poor Calorie Absorption and Exercise
B BK 123
SwollenColon Stating the obvious here but you have to consume more food than you need to in order to gain weight. If you're maintaining your current weight with, for example, 1500 cal/day, then you'll have to bump that up to, say 1750 cal/day. You'll eventually gain a little weight, then plateau. At that point bump your intake up again to 2000 cal/day. Repeat the process until you hit your target weight, and you'll have to continue at this level of caloric intake to maintain that weight. Protein and fats... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Possible obstruction/impacted small intestine
N Nela
Hazel I’m not sure how a doctor can identify a mass in any intestine and know that ”it doesn’t require surgery” without a more thorough investigation. I hope that at this point your pain has gone away or that you have had the mass checked out. Hope you are better. Take care... [ more ]
Nela Thanks Scott, all the emerg doc said was there is a mass in the upper part of my small intestine that doesn’t require surgery at this time and to come back if my pain gets bad again. I know I should have asked for more information. I’m starting to get pain again as we speak because I did eat an egg, my first solid food in almost two days? [ more ]
Scott F What did the ED doc say about the mass in the upper bowel? That’s kind of important. It’s hard to reconcile the mass location with your frequency and urgency, unless the feeling of urgency has nothing to do with your pouch (just pressure elsewhere that you can’t relieve). If you treat this as a partial obstruction then you’d focus on staying hydrated and avoiding any solid food. You could try white grape juice, or MiraLax if you’re feeling adventuresome. Mostly patience - *if* it’s a partial... [ more ]
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