J-Pouch ForumsHelp! Need advice now!
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J-Pouch ForumsHelp! Need advice now!
I have leakage at night occasionally-like a few times a year. It is usually accompanied by a bloated belly for a couple days beforehand. I take a bunch of probiotics the next couple days and it seems to go away. Sometimes I'll take a short course of oregano oil as well if there is also fatigue paired with it. It is usually a small amount of clear liquid that is smelly and it wakes me up because of the sudden warm feeling, but it doesn't feel like I'm pooping. It feels like nothing. [ more ]
Thank you I was thinking maybe it’s a little different this time as well [ more ]
I would definitely recommend to call the gastro's office and make an appointment to get checked out by a professional. Have you had pouchitis before? [ more ]
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J-Pouch ForumsHelp! Need advice now!
You're correct, Scott, about coffee. Though a diuretic it still has water, as one med journal noted. Get this. In my third hospitalization a physician told me to drink no water at all. I was there, he said, because I had flushed all my sodium out with H2O. He advised any liquid but that: tea, soda, coffee, whatever, just no water. I rather swiftly ignored that, I do drink water and I still dehydrate but not nearly to a hospitalization point. Only the salt tablets have retained the water I do... [ more ]
Coffee is *not* “very dehydrating.” It is considerably less hydrating than water and most other beverages because of its diuretic effect, so it’s far from an ideal rehydrating solution, but it’s best not to spread myths about it. Some folks get dehydrated from drinking too little, some get dehydrated from losing too much (from frequency and/or poor water absorption), and some have a combination of these. It’s best to work out what’s causing a hydration problem before proposing a specific... [ more ]
Since you have dehydration issues. I would develop a plan on "How to drink more water". First: Coffee is very dehydrating because it is a diuretic. I would give up coffee but if you cannot give up coffee, I would drink a cup of water behind every cup of coffee to replace what you lost. I always put salt in my water to help me retain the liquid much longer. Maybe that can be something you can try? Drinking water: before during and after every meal will help as well. Drinking water behind... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I honestly think that gas is going to be a part of our lives. The colon absorbs gas so since the colon is gone- were always going to have extra gas unfortunately. I think its just a matter of accepting. What helps my gas is Maalox, its treats painful gas too! https://www.webmd.com/drugs/2/...alox-ms-oral/details [ more ]
Of the foods you mentioned I only eat broccoli and occasionally teeny amounts of cauliflower but I might as well give beano a try. Thanks! [ more ]
Not all fiber is created equal. When I eat broccoli, cauliflower, cabbage, Brussels Sprouts, etc. I *always* take Beano to reduce the gas. Gas can fill up a pouch pretty easily, and then there’s no room for poop. [ more ]
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J-Pouch ForumsHelp! Need advice now!
That makes a lot of sense. I might have stayed there for a year if I had that many bowel obstructions! So painful. Glad things are improved now! That is no way to live. [ more ]
No major complications, but I did have an endless ileus, my guts took almost 4 weeks to wake up, but I think my surgeon, whom is nothing short of a hero to me, kept me in to save my mental health given where I came from going into that surgery. I had over 45 bowel obstructions in 2-3 years and so so so many ER visits and hospitalizations, dismissals and even hostility from other health professionals who weren't skilled or knowledgeable enough to diagnose my rare problem, accusations of being... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
Hi, Has your doc ordered a simple CT scan of abdomen/pelvis with IV contrast yet? Maybe that was part of the hernia work up - I know nothing about what's involved with that. The value of the CT scan with IV contrast is it shows if you have a partial blockage. You could call your doc on Monday and ask they put in an order for that diagnostic. Or, if you want clarity sooner, a trip to the ER might be in order. The ER admitting folks just need to know you have a j-pouch and are afraid you might... [ more ]
Sorry. That sounds serious. E. R. trip? I know when one is coming even if it's partial. But I have an ileo. I ate some leftovers yesterday. And everything I ate has a tendency alone to cause one. So I only had tiny portions of each. Chewed well. Drank a lot of water. It started anyway. But I got lucky. Been 16-17 hours since I ate. 4-6 after I knew. Couldn't find mirilax. I use a tad. Not a cap full. Works just as good. So I put a heating pad on high on the bulge for five hours. Having an... [ more ]
Im afraid that this never will solve by itself and my mind starts to think catasthrofic thoughts and just feel so sad… the buldge is still as much as it has been for a whole week now. The left side of my stomach is soft and the right side with the buldge is much more tense and swollen.. [ more ]
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J-Pouch ForumsHelp! Need advice now!
By the way, you can buy bottles of loperamide OTC on Amazon, but I am not sure I would trust them. They are sourced from China and it is not clear what is in them. Jan [ more ]
No, I just reduced my dosage gradually over the nearly 30 years with a j-pouch. I take a “holiday” from it from time to time to see if it really makes a difference for me. Turns out I still need it. Jan [ more ]
Thanks, Jan, I'll get some and try it very soon. Do you only take 4 because of the Remicade? [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
I am 70 too and, like your father, had J pouch surgery many decades ago. I have had several surgeries for kidney stones and after each surgery I suffered an ileus. The doctors told me to increase my hydration but trying to increase hydration without a colon is very hard to do. I chose to have IV saline infusions rather than drinking water that went right through me. Infusions can be combined with blood work to balance electolytes, add minerals, etc. to the saline. As for the gas, I laid on... [ more ]
Thanks you all for the advice, its been helpful! I've been really stressed seeing him like this. He has been walking a bit more, he isn't able to drink fluids due to having an NG tube. He passed some fluid but not quite a full BM yet. So thats a step in the right direction. [ more ]
Some people swear by chewing gum to get the gut stimulated after surgery. There is some science to it, but study data has been conflicting. The good news is that eventually everyone’s gut wakes up. The bad news is that there is a very wide range of that time table. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
I had emergency gallbladder surgery about 8yrs ago...not because I hadn't had signs but because no one wanted to touch it and especially during other surgeries due to cross-contamination. Nothing showed on the scans but during laparoscopic surgery, they discovered 1 huge stone and about a quart of black pus...it took hours to get rid of it. After the first week of discomfort due to the obvious distress my body was in, things settled down. I eat normally and have normal pouch function (k... [ more ]
@Nikki Nicole — If the MMT is slowing things down too much, it might be worth trying psyllium to normalize the stool consistency. Make sure to drink plenty of water throughout the day. If you can’t get that to work then a *modest* dose of MiraLax might help. [ more ]
If I have a jpouch already & now no gallbladder what can I take to be more stable with having bowel movements with me being on MMT Methadone Maintenance Treatment for pain . What can I take for this please someone help something that will keep my bowels moving easy & consistently. Also anything I can take so I can digest fats bc they constipate me but I’m trying to gain weight back too . Please help 🙏🏼😔😞 [ more ]
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J-Pouch ForumsHelp! Need advice now!
Have you tried an enema then using a catheter to see if you can get more complete emptying? [ more ]
Hi - sorry you are suffering so badly. So the problem seems to be that you are having trouble emptying the pouch fully, and getting backed up and it’s causing acid reflux and an overall feeling of illness. That sounds hellish. The doctors don’t really know exactly what is causing your inability to empty, but that inability to empty is what is causing your reflux (potentially). The doctors are recommending to give you an end ileostomy to get you feeling better, but they don’t have a pinpoint... [ more ]
This is a tough one. Sure, there are other options, like a pouch redo. Not many surgeons have experience with it. Plus, with a Crohn’s diagnosis, you cannot really risk losing even more small intestine if the second pouch fails. With Crohn’s, preserving your small intestine is a priority, because you are at a higher risk for future bowel resections. You’ve been on lots of different meds, so I don’t know what you have not tried. Still, I do not blame you for wanting to be sure that permanent... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Good luck! Hope the treatment has helped your soreness and pressure and that going forward your j pouch works wonderfully! It does take time so I will you patience as you heal! [ more ]
Thank you everyone for your help. My colorectal surgeon took a look down there and discovered multiple fissures (and hemorrhoids). I am now waiting for a procedure to help them heal, cauterization and Botox for the muscle. No wonder I had pain other than the burning and itching! Not sure how this happened as I don’t strain a ton. Must be just from the trauma in general and excessive BMs. [ more ]
Hey lyssicole I had the same diet right after reversal. It takes time for your system to adjust. I went 2 weeks on liquids then 2 two weeks on solid liquids before I could have real food. Has your Dr told you to take imodium to help slow things down? That will help alot right now. Things will get better, your doing what you can for the burn just give it time. [ more ]
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J-Pouch ForumsHelp! Need advice now!
@shoflo Hi - this thread is over 5 years old, so I don't know if you are still on the site, but hopefully you still receive forum notifications. May I ask if you had the manometry test, and also ask if your problem with constipation resolved and if so, how? I have been struggling with constipation for months and just today received a message that my G/I doc will be referring me for a manometry test. I hope you are doing well! [ more ]
I got once constipated post takedown when I consulted my surgeon to add imodium daily to restrict bms. For the first day it was good but the next day I was badly constipated. Nothing moved out and the pain was killing. I pushed so hard that a little blood came along with a little stool. What I found from that incident is I cant take more than 1 imodium a day. I have to drink plenty of fluids regularly even if it means having a little loose output. Also if I ever feel like being constipated I... [ more ]
I got my pouch Sep 2015 [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thanks for coming back and filling us in on how things worked out. Glad you are OK. Trips to the ER are always such a pain, but in the long run it is so much better than sitting at home wringing your hands. Jan [ more ]
I’m sorry you went through an ER visit, but I’m glad you’re well. A small amount of blood can look like an astonishing amount in the toilet. [ more ]
Since alot of the threads around bleeding and dilation don't really have a conclusion I thought I'd share what happened after my last post. I had several more very bloody episodes. One at 5am seemed like the worst, so my assumption was that things were progressing badly. I made the decision to go to the ER. I had not eaten since 10am the previous day, drinking only water. I sat in the ER hungry but feeling safe. My vitals were take by the triage nurse and they were all normal. They got me a... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I have a J pouch after having colorectal cancer 10 years ago- 2014.I wanted to share my Metamucil journey in the hopes of Helping anyone else searching on our website for tips and tricks. I became desperate to find a solution for the frequency of stools and how loose they were as no matter how I adjusted my diet or used anti-diarrhea medicine, The frequency and unpredictability of my bowel movements was severely limiting my ability to basically live, leave the house, go on trips Etc. I work... [ more ]
Cheers both, I use the 'my protein' version because it's cheap and the company is well known for simple honest quality supplements (amongst the UK body building community at least). So far I've had mixed results with a teaspoon twice a day (4 times my usual dosage). First day was great, second day uncomfortable with regular toilet breaks. Maybe it will settle down, I've been meaning to pay with dosage level for a while. Will let you know the outcome. Also I'm tempted to try benefiber at some... [ more ]
In case you want to try the exact psyllium product I referred to in my post, it is "Yerba Prima Psyllium Whole Husks Colon Cleanser". It is marketed for heart health. The ingredients list: "Psyllium seed husks". That's all. I started with 1 Tbsp and worked up to 2 Tbsps over a year. Best of luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Prolapse? Mine is not evident unless the endoscopist is using air to replicate passing stool, which reveals the prolapse that is interfering with emptying. It also makes me prone to bacterial overgrowth I believe. So, antibiotics for that. Symptoms similar to what you describe otherwise. The prolapse recurs and must be treated periodically. [ more ]
I have this. I’ve had the pouch 1 and a half years and it’s never been good for me. I plan to have it removed and go back to the stoma. The pouch isn’t for me [ more ]
How is your pain now? [ more ]
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J-Pouch ForumsHelp! Need advice now!
@SeattleJane and @Sara Marie thank you both so much for your reply. I really appreciate your feedback and will look into all these things. Hope you have a great rest of your week. [ more ]
There is a product called "Immy" that is supposed to help with the immune system. I haven't fallen prey to any virus since I started taking it in the spring. My husband had COVID and we didn't isolate and I didn't get it. Maybe it wasn't the supplement, but maybe it was? [ more ]
For what it's worth, I wear a fresh, clean KN95 mask everywhere outside of my home, even outdoor places like garden nurseries, walks in parks, Farmer's Markets, etc. Sometimes I double mask in medical facilities or rooms packed with people, on the bus and airplanes. I haven't had Covid, the flu or even a cold since Feburary of 2020. I have had all the typical vaccinations and every Covid new vax and booster for people 65 or older. I can hear the Beatles saying "Number 9, Number 9" in my head... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Seattle Jane, do a search on this website. There must be a few discussions on pouch prolapse. [ more ]
@Jan Dollar Thanks for the head's up about the threads on this site that will explain j pouch prolapse. I will look them up and read them. I am able to do an internet search on anal manometry and find good descriptions, but zero on j-pouch or pouch prolapse. To answer your question, I don't think anything was ruled out as far as previous adhesions are concerned, (but maybe?) and I also don't know if she looked as far up as the spot above the pouch. All she said to me when I groggily woke up... [ more ]
There have been a number of threads here that discuss pouch prolapse, fewer about anal manometry. I am not sure how your GI office handles patient communications, but you can certainly ask for these diagnostic procedures without getting an office appointment with your GI first. I am used to email communication through a patient portal and phone/video appointments. The defography would be scheduled with the radiology department. Your GI may need to refer out for the manometry, such as a... [ more ]
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J-Pouch ForumsHelp! Need advice now!
How about asking about having a serum drug level done? Then it will be clear if enough is absorbed. Jan [ more ]
Hopefully you’re taking it with food, at the same meal each day - that’s important. If it’s working you should experience the benefit within 28 days or so, with some effect starting at about 14 days. The peak blood levels are achieved at around 8-10 hours after a dose, so clearly it’s staying in your system long enough, though I’m not sure if the intact pill is worrisome or not. [ more ]
Yes, I did that and the pill (on two occasions) is basically in tact. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Ditto on the above in regard to acute vs chronic kidney disease. I am also one with chronic mild kidney disease. Yeah, I trend toward dehydration, mostly out of laziness. Plus, I also have type 2 diabetes. My primary has put me on low dose losartin (an angiotensin II receptor blocker) and Jardiance (SGLT2 inhibitor) to help protect kidney function and prevent further damage. My renal function has improved somewhat . I try to actively keep my fluids up, but I am still lazy. Jan [ more ]
Hello! Good to see some familiar faces! I don't mean to be a stranger, I should pop in more often! I'm mostly doing well, with the occasional health hiccups that I've come to expect after almost 20 years without a colon. How are you doing? Thanks so much for the info. I thought it was odd that the eGFR would fluctuate nearly 20 pts either way (I couldn't find much online about rates varying at all, other than to say they decline with age) , but hydration could certainly explain it. I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
YIke’s! Had not heard that BCIR not being done anymore nor did I hear that regarding K pouch. I think Dr Dietz is last I heard doing k pouch. Really makes me hope J pouch redo goes well if in fact this is the case. [ more ]
Just be aware the BCIR isnt really performed any longer. Even the kpouch is hard to find a surgeon these days. [ more ]
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J-Pouch ForumsHelp! Need advice now!
How far are you post surgery. If it’s still in the first few months it will get better. But I’m 8 years out and I get butt burn all the time, to the point where I see blood on the toilet paper from my irritated skin. I use calmoseptine cream, have a bidet, use wipes at work, but I still get it. It’s just something i deal with now. I also try to take medicine and added fiber to decrease output. It sucks though. But maybe some changes like that might help a little. Hang in there! [ more ]
AMEN!!!!! If you get it at cvs and sign up for extracare , you get coupons!!!! Yeah i miss spicy food haha, i use mild hot sauce now. Can you tolerate mild??? [ more ]
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J-Pouch ForumsHelp! Need advice now!
I had an incisional hernia repair about year after my j-pouch surgery when I was about 41. It was not as complicated as yours. However, it was supposed to be an ambulatory surgery and I wound up being kept overnight. I had a mesh repair. I don’t remember any serious issues with it. I did have a seroma that needed draining, but otherwise it was pretty much a nothing burger compared to my j-pouch and the litany of complications from that. As far as your age goes, your overall health is more... [ more ]
Awesome!!! Please let me know how that goes!!!! I am praying for you. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Vancomycin often fails to clear up C. Diff. [ more ]
Doug, I’m sorry to hear that. I did not read everyone’s answer but Rifaximin is for you. It will help. [ more ]
I haven’t been tested. I have had it before. But I did do almost 3 weeks of Vancomycin as the first one I tried. So hopefully if it was that, that would have taken care of it. But it didn’t help at all. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thank you Scott, I have today spoken with the specialist nurse, updating her on my current predicament. The outcome from this conversation is that I will have to wait until my next scheduled scopes to see my consultant. She will try to ensure that this happens before the end of November, although she couldn’t guarantee this. [ more ]
Rachel, why not make an appointment ASAP with your GI? I’d suggest letting them know that it’s somewhat urgent. If you have developed a pouch outlet stricture the GI might be able to improve things with a finger. If it’s something else then you can at least get the process started of working out what’s going on. I hope things get better soon! [ more ]
Hi Scott Thank you for your response. When I had the polyp removed in April there was no obstruction and my pouch looked healthy. Currently I can insert the catheter approximately one inch with no difficulty, then I have to try and manipulate it in any further. I do this by pinching it together and pushing it very gently and slowly a mm at a time. Once it is in a few inches I can then move it more freely. Regarding emptying, years ago when I used a catheter it would slide in quickly and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Are you really saying that you can’t poop at all? I assume that by atropine you actually mean Lomotil (diphenoxylate with atropine). MiraLax might be helpful, but just resuming the psyllium might also help. [ more ]
Thank you for your reply. I stopped taking atropine and psyllium hush a few weeks ago with constipation.. Gas has stopped but not able to pass BM . No pain of blockage. Very hydrated. Exercise regularly. Unsure of what to do. Will try Miralux. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Premeds with solumedrol and benedryl will knock out the pain. loved this bio drug. 10 years then stopped working [ more ]
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Hello, I’ve been on Entyvio since March of this year. I did experience some fatigue initially after my first infusion but it hasn’t been as bad after the following infusions. I did not have the body aches that you’re describing. I do have body aches, due to my age! Hahaha. I take Tylenol which helps. All the best to you [ more ]
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J-Pouch ForumsHelp! Need advice now!
thank you AllyKat. I appreciate the info and the dr referral. I hope you're feeling better soon! [ more ]
I have floppy pouch. I needed a resection to fix the issue. And at the same time my bio drug stopped working. I’ve been pretty sick. I went to Dr Schen for a second opinion. He actually misdiagnosed me. He wanted to put those clips in. After talking to my GI and surgeon I refused and now glad I did. Go see Dr Milsom at Cornell. He’s very experienced in floppy pouches. And My GI is Dr Scherl at the IBD center. Message me if you even want to use my name. [ more ]
Hi all - I'm new to this group and I'm sorry to see that there are so many unsatisfactory outcomes here. I had a j-pouch procedure for UC done in 1986 and have had pretty much every complication over time - pouchitis, obstructions, fistula. About a month ago, after being unable to pass much of anything, I was diagnosed with a "floppy pouch". Dr Shen at Columbia did a scope and inserted some bands but there's really been no improvement in my situation. Like many of you, I'm miserable - just... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hi all - I'm new to this group and I'm sorry to see that there are so many unsatisfactory outcomes here. I had a j-pouch procedure for UC done in 1986 and have had pretty much every complication over time - pouchitis, obstructions, fistula. About a month ago, after being unable to pass much of anything, I was diagnosed with a "floppy pouch". Dr Shen at Columbia Presbyterian in NYC did a scope and inserted some bands but there's really been no improvement in my situation. Like many of you,... [ more ]
I’m have this now. I’ve had 4 conservative surgeries and next week I’m having a resection. They found a long loop that needs to be shortened and scar tissue. what have you done for your issue? thanks, I know this post is old but if you see it please respond. I’m extremely nervous. [ more ]
Do you think you might need a pouch redo??? [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
That is pretty smart!!! I am so happy all of this worked out for you! Please let us know how it goes! Your own bathroom sounds lovely!!! [ more ]
No, it's in January but I know that my boss has to book the Airbnb soon so I wanted to reach out early [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thank you all for sharing your research, info, expertise on recommended antibiotics for pouchitis! Much appreciated! I’m more than halfway thru my Cipro dosage and have managed to avoid getting sunburn even with holiday weekend. I believe it alone helped reduce my frequency, which is I guess the most obvious symptom of pouchitis I had. After I messaged Dr re. taking both, reply was yes she wanted me to take both so I am almost a week into dosage of the Metronidizole. Haven’t noticed any... [ more ]
https://www.gastrojournal.org/article/S0016-5085 (23)05142-9/fulltext AGA Guidelines are not the most exciting reading, but support Cipro and Flagyl as first choice antibiotics, including in combination Recommendation 3. In patients with UC who have undergone IPAA and experience infrequent symptoms of pouchitis, the AGA suggests using antibiotics for treatment of pouchitis. (Conditional recommendation, very low certainty of evidence) Implementation considerations • Based on available... [ more ]
For what it is worth, I used AI to research medications for treating pouchitis. Not all physicians may know about these. Here is what I found: MEDICATIONS FOR POUCHITIS Budesonide and Entyvio can be used to treat pouchitis, although their use is considered off-label for this condition. Budesonide: This corticosteroid can be used for chronic antibiotic-refractory pouchitis, particularly in a controlled-ileal release form . Entyvio: This medication, which is typically used for ulcerative... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
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I learned recently that I don't have a rectal cuff. Maybe I should be thankful. [ more ]
Thank you for the update! So with the inflammation in the small bowel is he thinking crohns? Is that why biologics? I’ve always wondered if this might be the case with me. I’m seeing my doctor at Cleveland clinic on Friday so I guess I’ll see what they want to do next. I had a clean scope 6 months ago but this has been going on more recently. I’ve always had chronic cuffitis but it had been under control for a while now so now I just don’t know if it’s flared up, if it’s pouchitis (which... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Oh great!! Thank-you!! [ more ]
FYI Dr Remzi is now at: Northwell Health Center for Advanced IBD Care , on Long Island Good luck Ljz. I'll let y'all know how the appointment went, after Sept. 9th. [ more ]
Following, May be seeking appt with Dr Remzi as well. Ant other patients who’ve had surgery with Dr Holubar at CC recently, or kind of recently? Other CC surgeons or gastro who deal with problem jpouches? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Your welcome!!! Drink more water please! ASAP! [ more ]
Thanks for the link, Lauren of Emerald City! I checked it out; cool. [ more ]
That's a low dosage, but if you experience an improvement in symptoms within 72 hours, you will have your answer. Your difficulty evacuating is obviously not related to your hydration as your GI diagnosed, but drinking more than 30 ounces of fluids a day and consuming electrolyte beverages will be good for your overall health. [ more ]
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J-Pouch ForumsHelp! Need advice now!
https://www.j-pouch.org/topic/...6#720928881040886256 For more on this topic at see linked discussion above. [ more ]
I have Bile acid makabsorption and fat malabsorption and it can affect absorption of fat soluble vitamins. the theory is that the body compensates to keep calcium and vitamin levels by overproducing PTH. [ more ]
I’ve actually ha problems with low PTH. Not sure why, or if it’s associated with my j pouch and bowl resection. Doc isn’t worried about it - not enough to do anything about it. I’m taking a calcium supplement daily. Have you asked your doc? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Is it hard keeping up with the bottle??? [ more ]
On the subject of enemas: I have discovered that I can use my bidet wand on my home toilet for this purpose, just hold it tight to the butthole and turn the water on. Much handier than messing with the enema bottles. I still take a bottle when I travel. [ more ]
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J-Pouch ForumsHelp! Need advice now!
The term "broad spectrum" antibiotic means it covers a lot of bacteria but not all. Cipro and Flagyl are from completely different antibiotic families, and work on different bacteria. It's common sense that using them in tandem ought to provide better results than using either one alone, and that was my experience as well as Scott's. A lot of people unfortunately struggle with the side effects of one or the other, particularly flagyl. If side effects are not an issue with either drug, there... [ more ]
In my case Flagyl alone had never been effective, but it nevertheless helped a great deal when added to my failing Cipro regimen. The combination has worked well for about 8 years. [ more ]
So to answer some of the questions in the chain.. Yes, have tried other antibiotics none worked except for Cirpo. Also was on Remicade before I got the J pouch - it worked for a few months and then no more. Since they thought it was UC we did the J-pouch. I am open to biologics if they help. I am just scared that nothing else will help. Anyone have luck with the biologics when either antibiotic resistant pouchitis or rediagnosed to Crohns? [ more ]
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J-Pouch ForumsHelp! Need advice now!
I started with a teaspoon of psyllium before each meal (with lots of water) and now I use a heaping teaspoon. It's best when I combine it with other soluble fibers like flax meal. [ more ]
I’d try something like half a psyllium dose (as indicated on the package) with a meal, one time, and see if there’s a noticeable effect. If that doesn’t do anything much you could try 3/4 of a dose, and so on. I take a full dose twice a day, with 8 oz. of water. [ more ]
Thanks for your replies what would be a good starting point for psyllium. i don’t want to thick stool. Anyone use miralax and psyllium ? Has anyone got experience with san pellegrino magnesium [ more ]
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J-Pouch ForumsHelp! Need advice now!
I learned that from someone here. It makes sense. [ more ]
Oh nice!!! Thank-you for that info!!! I remember you said Calmospetine is not good for yeast infections because it traps the yeast??? [ more ]
@Former Member, I haven't experimented with multiple jock itch creams. The one I have tried which seems to work is Walgreens generic "Butenafine Hydrochloride Cream 1%." I like prefer normal humans as doctors, too! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Yeah I forgot to mention him to (Dr. Remzi), I never once heard a complain about him, and he has videos on youtube so you can get a good feel about him. he has tons of videos on youtube. [ more ]
Thank you Lauren and Jeff’s Mom! I have heard of Dr. Remzi and how wonderful he is. I will consider those names you’ve provided if no one at CC, but possibly a virtual visit to get things started. I will do anything and everything also to avoid an ostomy. Thanks! Much appreciate your feedback! [ more ]
To think she wants me to see gastro and surgeon. She thinks because of the various complications I have being with a team there would be helpful. She also mentioned a surgeon that was there that left so she did not know who to recommend. It is suspected I have a prolapse. There is a good colorectal surgeon here in Indy, but think she thinks I need larger better equipped pouch team for all the various issues. This surgeon put in a Medtronic interstim device May 2023. Seems to help some but... [ more ]
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J-Pouch ForumsHelp! Need advice now!
So glad you saw dr and are addressing the problems. Good luck with your treatments and recovery! [ more ]
@Scott F at first I was having trouble with actually keeping them in once I had already inserted them but I've since gotten the hang of it and I've learned that a small amount of leakage is somewhat normal and not too much to worry about. As I've been taking them, I'm doing better with it though [ more ]
Glad your doing better, keep us updated [ more ]
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J-Pouch ForumsHelp! Need advice now!
Your welcome. Sorry you have to got through this hell! I hope things get better. The lidocaine idea sounds genius!!! That will numb that area for you. Yeah i understand what you mean. Please let me know how it goes!!! It might be worth getting the anorectal monometry but I understand what you mean when you say it might be too painful, we been through enough shit lol. Let us know how it goes with everything hon!!! [ more ]
Thanks! I do have surgical consult next month for suspected prolapse but trying to survive til then. Ordered some things with lidocain that might help. Just wonder if anyone else had other suggestions. Gastro want me to do Anorectal Monometry test before seeing surgeon but thinking too painful since I’d have to be awake. I’ve never been diagnosed with Chrohns, just UC, but see that connection in research on perianal disease. Mmmm..I’m following treatment recommend as best I can. Again, thanks! [ more ]
❤️
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J-Pouch ForumsHelp! Need advice now!
Exact situation!!! [ more ]
HI Valen, I was just today thinking about how when I get dehydrated my output gets too thick and it's hard to empty. Then as soon as I get enough fluids on board I can't get far from the bathroom. I find emptying easier when it's watery. I also need to take in more water than 'before-pouch', since a fair bit comes out that way instead of the bladder. [ more ]
I'm a guy, but if I ever feel like I'm too bulked up and bloated I'll have a hot cup of coffee or maybe some hot tea. Luckily I'm able to tolerate coffee and have multiple cups throughout the day since it doesn't send me running to the bathroom. Might be a placebo effect for me, but I know for others it can get things moving. If it's a concern it's worth a shot! [ more ]
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J-Pouch ForumsHelp! Need advice now!
This makes total sense! You know your body. After all, you live in it, and if it doesn't feel right, that's probably the best guide! From what I have read on the all-knowing internet (haha), soluble fiber (like psyllium) is more of a gut regulator than anything else. It can help with movement that is too fast OR too slow, but the slower you are, the more water you would want to take with it. I didn't take it for years because I thought it was only for constipation. It has helped my guts a... [ more ]
I've always been hesitant to try any fiber agents - just really worrisome regarding causing any blockages, etc. I have been prone, mostly, to low motility, which causes a sort of constipation (and then SIBO). I have been handling that well. What would (either) fiber do? And, what is the difference? Scott, to answer your other question, I do have a bounty of Flagyl here, more than enough for a 2 week course. I'm thinking of starting it and making an appt for 8/14 (2 weeks away). Seem... [ more ]
Right on point Sara Marie!!! [ more ]
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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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