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J-Pouch ForumsGeneral Discussion
NEED NEW DOCS IN NYC-CONNECTICUT AREAS.
LH Lisa H
Pouchomarx I had Remzi and Shen both for my first 2 pouches in Cleveland before they both left for NYC. I cant recommend both of them enough. I also developed a close personal relationship with both and just talked to both around Christmas. and Remzi is not close to 70 years old, he is 56 i believe. [ more ]
AllyKat Oh so that’s where Dr Sonoda went. He trained with Milsom. Btw, that hospital is fabulous. I had brain surgery there. I wish the city hospital would function that that one. ps what’s wrong with Remzi? I was thinking of seeing him for a second opinion. [ more ]
Former Member One more up vote for Mt Sinai IBD research center. They have GIs who are specialized on J-pouches. You cannot find those GI's easily. Also, they treat you with empathy. When I needed extra ostomy supplies, all I needed was to leave a voicemail to Mt Sinai nurses for extra prescription. They did not question anything. But NYU nurses treated me as if I am asking for a favor, as if I am deceiving them, and made it extra difficult to get prescription for extra supplies. [ more ]
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J-Pouch ForumsGeneral Discussion
Entyvio, antibiotics, infections
ehbraunehbraun
ehbraun Hmmmm. My rheumatologist mentioned that years ago, research about joint inflammation was indicating that antibiotics might be a good path to explore. It was more or less abandoned. [ more ]
Scott F Xifaxan will generally have fewer side effects than other antibiotics (except for financial side effects), but searching for an effective antibiotic can sometimes preclude being choosy. Your GI sounds systematic, which is a very good thing. I wouldn’t expect antibiotics to help much with joint pain, but perhaps they do more than I know. I wish they made my hands feel better, and I’m on two different ones. Psyllium fiber might help regulate your stool consistency - it tends toward a... [ more ]
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J-Pouch ForumsGeneral Discussion
Having trouble going
KelliKelli
AllyKat Dealing with this now. I have floppy pouch sydrome that’s messing with my intestines. while you probably don’t have this you might be dealing with part blockage or twist. Especially since you mentioned pain. I would see my surgeon asap. [ more ]
PouchLogic Agree with Scott. You may also need more fiber. Has your diet changed? I find winter time hard to get my water in. [ more ]
Scott F If you’re getting pebbles of stool then you may not be drinking enough water. If that doesn’t help you might get benefit from a bit of MiraLax to get things moving properly again. I hope you feel better soon! [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone tried Xifaxin/Rifaximin and can we absorb the tablets?
F Fredz
Fredz Interesting. I don’t have inflammation in my jpouch luckily atm, I am using it to treat SIBO. Will give it a go [ more ]
AllyKat This was the best mediation for my pouch. I took it for years. Unfortunately I had trush, my dr took me off, I then had the flare from hell and never recovered on it again. Personally, after this I can to my own personal belief that antibiotics just mess up your new system. [ more ]
Mrs P Hi, I have taken Xifaxin with no problem and had success with it. My Doc gave me a coupon to cover the copay. It can be expensive. Good luck to you! [ more ]
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J-Pouch ForumsGeneral Discussion
Good News.
aka KNKLHEADaka KNKLHEAD
Maverick Plus ❤️
ceew https://www.j-pouch.org/topic/...1#703753854159755761 The temp Loop ileostomy was the worst part. I had problems with that. [ more ]
ceew https://www.j-pouch.org/topic/...2#703331641654213452 Cindy R I don’t remember how long it took honestly. I don’t have to run to the bathroom unless I have put it off for a long time. Pretty much have control. Some days I may go 6 times. [ more ]
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J-Pouch ForumsGeneral Discussion
Celiac Plexus block
N NurseKaren
Jaypea The celiac plexus innervates the nerves to the intestine and stomach (amongst other things). If the pain is not originating from these areas and has its origin in the venous insufficiency or circulatory problems then the block won't help. I would be concerned that with the intestinal issues you have had that blocking nerve signals from the intestine, stomach, gall bladder and pancreas might cause more problems than solve. I would want a thorough investigation on the cause of the pain rather... [ more ]
NurseKaren ❤️
Scott F One question I’d ask is whether the effects (and the side effects!) are temporary or permanent. My risk assessment would be very different depending on the answer. [ more ]
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J-Pouch ForumsGeneral Discussion
going and then not
EI Eric in Seattle
Eric in Seattle Thank you all. [ more ]
PouchLogic Do you continue drinking after you eat? I try to eat as early as possible, then I minimize liquid intake at 7pm, if I stay up until 11ish and have a bm I can often make it until 7 the next morning. I stopped taking imodium as it was problematic for me. [ more ]
Scott F I take psyllium fiber with breakfast and dinner. The dose that woks best for me is the same as what the package label suggests, with a full 8 ounces of water. Some people do better with a smaller dose. Some people take it with less water, but if you’re feeling blocked up I wouldn’t suggest trying that. The simplest thing to try if you’re getting stopped up is to increase water intake throughout the day. That won’t fix every problem, but it fixes some. [ more ]
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J-Pouch ForumsGeneral Discussion
Unused supplies
KG Kelly G.
Bubba1028 My surgeon took them took, since they given them out as samples to their patients before the patients order supplies (to test them out). See if they’ll take them. [ more ]
roseviolet There's an organization called Friends of Ostomates Worldwide (FOW for short). You can mail your supplies to that organization and get a tax write-off. [ more ]
dlewicki I heard homeless shelters would maybe have a need for them. [ more ]
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J-Pouch ForumsGeneral Discussion
pouch prolapse into vagina
VV Valerie Valerie
Rachel1 Hi Valerie I’ve come across your post although it’s an old one now. j believe I am in the same position you were in. My images show jpouch prolapsing into vagina but also uterus and bladder in defecation. So far I’m trying all sorts. It’s been determined that smooth muscle in the anus is too tight and has made all this worse. As I’m pushing pushing against it. How did things end up for you? [ more ]
NJshoremom Hi Valerie- a pouch redo is - removal of the old pouch & create a new one. Fix all the inner problems (unique to each poucher)mine happened to be structural- my pouch was stretched out & not the chrohns diagnosis. I had all my surgeries done at NYU by Dr Remzi. He's the absolute best for jpouch failures. He and his team did a thorough work up and said to me -yep- its structural. I almost cried with relief. Finally someone gets it. I hope you can get answers for all your discomfort. I... [ more ]
Valerie Valerie Hi again, I am curious where you had it done. Thanks [ more ]
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J-Pouch ForumsGeneral Discussion
Twisted Pouch Syndrome
A AmyH
ceew Basically the same thing happened to me. [ more ]
Kushami Goodness, I am glad you got some expert help! It is scary in the article when it says that some surgeons looking at a twisted pouch in exploratory surgery to see what was wrong failed to recognise it. I have an obscure complication (megapouch). I wish I could see Dr Holubar. He sounds very conscientious. [ more ]
Kushami ❤️
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J-Pouch ForumsGeneral Discussion
insurance question
I Indy_Dave
ceew I was told that insurance would consider me still having UC even if I no longer have a colon. [ more ]
Idifmb With UC, after your surgeries, anything that occurs would medically be diagnosed as something else like pouchitis or cuffitis. So technically no, you don't have UC anymore. But if you were also diagnosed with crohns then that's different since crohns can present itself anywhere in the digestive system. Unless your drs are saying your flare ups are specifically related to having crohns and your medical records don't say you have it, i wouldn't include it. Good luck! [ more ]
Scott F There’s more than one answer to this, but I think since your original diagnosis was UC, and your colon was removed in 2007 you can reasonably say that you haven’t had UC for 15 years. None of the things that can happen to you in the future would be properly called “UC.” Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Constipation?
S Solomin
SeattleJane When I have that problem, and it happens from time to time, Miralax works for me. It's pretty gentle, but effective. This might not work for you, but I take about half than the prescribed amount of Miralax stirred into a glass of water. I also opt for a liquid diet when I am constipated - pho broth, jello, vegetable broth, water, herbal tea. That helps. [ more ]
Jaydog Just my own 2 cents but if I'm constipated I go in a 24 hour or longer water fast and drink tons of water. It seems to empty me out and kinda reset my system. Fasting is good for you anyways so it's a win win. [ more ]
Scott F Difficulty emptying a J-pouch usually isn’t due to constipation (when the stool becomes hard and difficult to pass). There are various causes and, correspondingly, various solutions. It would help to know how successful the dilation was, what part was dilated, and whether the doctor thinks it will need to be repeated. The pain might be from an anal fissure, especially if the pouch outlet was dilated too aggressively. For some of the more common pouch emptying problems MiraLax is recommended,... [ more ]
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J-Pouch ForumsGeneral Discussion
Crohn’s diagnosis, Humira question
R RB15
SteveG RB15, I had such a small lump inside my anus several years ago. In my case it was a wrinkle that builds up in front of an anal fissure. You should try if you can see it with a mirror. I would also recommend seeing a proctologist. A fissure in the anal canal is often associated with stinging pain after a BM. But a hemorrhoid can also prolapse when you push during a BM. If it retracts afterwards a hemorrhoid is more likely, a wrinkle would not do so. Concerning bleeding, have you ever been... [ more ]
Scott F The lump you describe sounds to me like an internal hemorrhoid. They generally bleed bright red, but as you say that can get mixed well with looser stool, perhaps changing the color. Hemorrhoids can bleed plenty, but it isn’t hidden - it’s right in the toilet bowl. Are you seeing blood consistently enough to explain your iron levels? [ more ]
RB15 Hello again. I just have a quick question. Im still bleeding enough to need a full IV iron infusion every 4 weeks and it has my surgeon and GI stumped. They don’t think the inflammation i have would cause that amount of blood, and believe the Humira would be healing any small ulcers by now, so are sending me to see another local surgeon next week to cast a fresh eye over it. My question is regarding internal hemorrhoids - for quite a few years i sometimes notice a small quite firm lump just... [ more ]
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J-Pouch ForumsGeneral Discussion
Viome
K KS
KS Thanks Scott. I was hoping for them to tell me dietary wise, what i can digest etc. Food diary and all is not really helping. I havent had a day wthout tummy ache is past 8+ weeks [ more ]
Scott F If their recommendations have any decent science behind them at all they’ll nevertheless presume a colon is present. What sort of results are you hoping for? [ more ]
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J-Pouch ForumsGeneral Discussion
have to push my stomach in very hard to evacuate!
fqfq
Unhappy JAS can you please tell me how did you fix the issue with your fistulas? [ more ]
JAS Hi fq and everyone, yes familiar with this probably been dealing with it for 15 years. Initially I used to strain which was sometimes productive and sometimes not. Over time I figured out my urgency at these times often comes from gas rather than stool and straining on the gas just moves it around but not necessarily out. I have found that lying down and relaxing will allow the gas to "rise' pouch and I can let it out and remove the urgency feeling. The position I take to do this has sifhted... [ more ]
Sara Marie I would like to know more about the "valsava maneuver". Where did you receive training on this? It sounds complicated. [ more ]
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J-Pouch ForumsGeneral Discussion
Amitriptyline-milligram?
Y ytcrockpot
Scott F The dosing of amitriptyline varies a *lot* depending on what’s being treated. The range (after a gradual start) for depression is generally 50-150 mg per day, up to a maximum of 300 mg per day. For other purposes (migraines, fibromyalgia, neuropathic pain, etc.) the recommended dosing varies. [ more ]
Jfill21 25 mg at bedtime [ more ]
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J-Pouch ForumsGeneral Discussion
Open surgery for high grade obtruction with Intussusception
G girlunky
Carwyn ❤️
girlunky Thanks Scott and Jan. It is hard for me to be patient after a lifetime of pushing myself. Guess the laparoscopic surgeries spoiled me. [ more ]
Jan Dollar I am with Scott on this one. Give yourself a couple of months (at least), and don’t concern yourself about how it all looks. It can be ugly for a good while. Generally, there will be gradual healing. Keep in mind that there is a lot of healing that has to happen below the skin too. Be kind to yourself and be as active as you can, and rest as much as you feel the need. But, do be on the lookout for signs of infection, like increasing redness and tenderness at the incision. Also, fever and... [ more ]
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J-Pouch ForumsGeneral Discussion
Can we digest Pepto Bismol in tablet form?
F Fredz
Jan Dollar Personally, I prefer the caplets over the liquid or chewables. This is mostly because I don’t like the taste and don’t want to risk a black tongue. If I was taking it for upset stomach/nausea, I might opt for the liquid or chewable to get a faster release. But for reduction of small bowel bacteria. There isn’t the need for release in the stomach before it gets to the small bowel. Jan [ more ]
Scott F You can edit a post. Click on the gear icon at the lower right-hand corner and you should see the option when it’s your post. [ more ]
jrws P.S. That should read above "...can't verify" whether it really helps or not. (Is there a way to edit a post after we post?) [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch operation
H hpinder67
cbear I’m sorry you’re struggling! I know some (like me) have issues with anaesthetic making the intestines overly sleepy and slow to waking up. I remember during that step I had a longer stay because of this and was vomiting a lot of bile. Once you are able to walk more it should help your recovery. I think it feels so much worse when you’re in hospital, hopefully you get to go home soon and progress with your recovery. Wishing you all the best x [ more ]
Scott F I was in for what felt like the longest 10 days of my life. Now I can barely remember the misery and despair. [ more ]
New577 Hello, I certainly can relate to your situation. I had complications (fistula requiring life saving emergency surgery), and poor pouch function for the first 6 months of its existence. I spent a total of 40 days in the hospital in 2021. The feeling of helplessness and the tears I shed were overwhelming at the time. I will tell you what others told me at the time. It is very early in the process and your story is not yet written. Our bodies have an incredible capacity for healing. Mine did... [ more ]
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J-Pouch ForumsGeneral Discussion
Tired of Abdominal Pain
KennyJG44KennyJG44
SadieM1210 @KennyJG44 I ended up doing a liquid diet for a day and then drank a colon prep (laxative) like you would if you were going in for an endoscope. I repeated it a few times. [ more ]
KennyJG44 @SadieM1210 what did they end up doing for that issue?? [ more ]
SadieM1210 @KennyJG44 Have you had a CT scan done of your abdomen? The reason I ask is because I used to have similar pain and what they found out was even though I was having 10 or more bms a day, I still had stool higher up in my intestines. So I was actually constipated. This made no sense to me since I was always going to the bathroom but I was told watery or loose stool was slowly coming down but the more solid stool was not and that was causing some of my achy pains and gas. [ more ]
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J-Pouch ForumsGeneral Discussion
Revert back to ileostomy
GEB56GEB56
GEB56 Hi Patti. Thank you so much for your response. I, too, am afraid of surgery. I almost died with the colectomy/creating Jpouch. I am thinking that when you got your Jpouch you were still quite young. I believe we all have some health issues and are just not as strong in our 60s. Perhaps that is part of why our Jpouches fail at this point. If you wish, I would love to hear how you are after your January surgery. I can tell you are an intelligent woman who did not come to your decision easily. [ more ]
Fight like a girl Hi Gail..I'm sorry to hear of your need to remove your jpouch. I too am in the same situation. Our stories match almost to a T ! I've been in pain past 12 yrs or so. I got my j pouch back in 1989...had u.c. for 10 yrs & back then I wasnt responding to the meds they had available. Long story..major complications but a great surgeon Dr Lavery at ccf in Ohio saved my life & j pouch. I was good for about 20 yrs. Then c diff, pouchitis, chronic pouch ulcers, etc,etc. I've been on numerous... [ more ]
GEB56 Dear Steve and n/a: I really appreciate your two different takes on the issue. As noted, I am not benefitting anymore (for at least 1 1/2 years from two antibiotics alternating at high doses after low dosage was not effective. Still no luck and worsening daily side effects; more BMs, nausea, loss of appetite, drowsy and a general feeling of unwellness. I think n/a, your thought of diversion is interesting and one I didn't think of. It would calm things down, and give me time to see if ostomy... [ more ]
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J-Pouch ForumsGeneral Discussion
Oral Xeljanz
G grandmaof1
grandmaof1 Yes I found out I have pelvic floor issues. Did PT rectally and it didn’t help either. So now I am seeing a different PT for the vaginal issues and I’m not sure if that is helping or not. It is vaginally helping me though. I have a scope yearly and it looks great. But I don’t feel well at all. Somedays I have nothing but diarrhea and other days I can’t go at all. Thank you for asking. Honestly I’d love to go back to the bag. [ more ]
fourgrubbs I don't see anyone replied to this but I am curious, have you gotten any relief or answers? [ more ]
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J-Pouch ForumsGeneral Discussion
Diet/ Culinary solutions
A AMB
Sara Marie ❤️
PouchLogic Basically I eat meat, pasta and potatoes. I occasionally eat very small amounts of non green vegetables like carrots or some squash. I used the low fodmap diet to figure out my triggers. I also make sure to fully chew my food to reduce possible obstructions. Basically I need to stay away from spices, fibers and dairy. I also stay away from sugar but candy etc is my weakness. The best things for me seem to be taking Visbiome regularly and CBD oil in capsule form. I have been awake (not by... [ more ]
AMB @Former Member : Great article! Thank you for posting it. @PouchLogic : I introduce new things one at a time, and a small amount at a time. It doesn't always work out, but I keep trying. Sometimes it's hard to know if food causes grief or if my never-ending attempt to discontinue Cipro is causing it as I reduce the dose. Or a little of both. What foods work for you? You're absolutely right - there is such variation in our experiences, with history, surgical experience, food and meds,... [ more ]
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J-Pouch ForumsGeneral Discussion
Can I crush slow released tablets?
F Fredz
New577 It was hydrogen related. I actually cured it indirectly, because I was taking bactrim for recurring UTIs when I told my GI it was cured he was not surprised since his treatment preference is xifaxin, doxycycline and bactrim [ more ]
Fredz Interesting. Do you know what kind of SIBO you had? I have hydrogen sulfide (seems Staph. Aureus is the bacteria that has overgrown) and it is causing me a ton of problems. Don’t know if rifaximin works for it, but I think there are som other things I could try if I am not able to cure it now. [ more ]
New577 Yes, I read that this can help SIBO. when I had it, the GI wrote for xifaxin. So expensive, insurance would not cover. It was finally cured with bactrim. please let us know if this supplement works or does not. good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
long term diverting ileostomy - health implications?
S scallop
Karrine following. after 38 years I am considering diverting as well. [ more ]
scallop Thanks for tge feedgack. May I ask who and where your surgeon is? Did you excuse abd if so are you happy you did? best debbie [ more ]
Jaypea I was advised by my surgeon (whom I trust very much) that an unused rectal area (pouch/rectum) should be excised within 5 years of a permanent colostomy/ileostomy due to increased risk of cancer occurring there. Good luck with your decision. [ more ]
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J-Pouch ForumsGeneral Discussion
Mesalazine enema
E Enterin
Scott F Cuffitis behaves a lot like UC. It can wax and wane on its own, it can be chronically troublesome, and it can disappear for a long time. Mesalamine isn't generally a short-term treatment that makes cuffitis go away. It's usually a long-term treatment to keep cuffitis under (hopefully) good control. Bad cuffitis can be definitively treated with pouch advancement surgery, but that is generally reserved for when medication isn't working adequately. [ more ]
New577 Hard to say. since my reason for the colectomy was high grade dysplasia in the rectum, my GI and I have decided to treat my cuffitis aggressively. I have been on mesalamine for over a year and at least until my next scope. you definitely want this managed by a “knowledgeable” GI. [ more ]
Enterin You can find excellent doctors here. How long is the expected treatment of cuffitis with an enema? [ more ]
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J-Pouch ForumsGeneral Discussion
COVID-19 and J-Pouch
DD Denise D
Linzalisha Hi I had Covid and was positive for over 12 days. I was admitted to hospitals but absolutely no beds and the wait to be seen was over 12 hours so I went home as that would have made me worse. I got the infusion ’ SOTROVIMAB’ and I felt amazing after it and for two days but then I went back down but after a few more days I was negative. it can take a while - Iv been off work over a month and just going back on phase return. It’s really important to keep hydrated and rest. Maybe tell your work... [ more ]
MetsFan Hello I also had very bad digestive issues, pain diarrhea, after testing positive for Covid. It seemed to come in stages first digestive, then sinus and chest cold and then fatigue. This has been going on for three weeks. I still have a pretty good head cold with dizziness and ear pain. I was wondering if anyone had these type of symptoms and how long it takes to feel normal again. My primary care Doctor would have put me in the hospital, but with the care and support of family I avoided it. [ more ]
SadieM1210 @Denise D I ended up in the ER with horrible abdominal pain and severe diarrhea. I was extremely dehydrated. That's where I found out I had covid. I was told by the Dr that covid does effect crohns and UC. It causes it to flare out big time. It took about 8 days before I started feeling some kind of relief. [ more ]
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J-Pouch ForumsGeneral Discussion
Doctors in NE Florida
fourgrubbsfourgrubbs
fourgrubbs Thank you so much for your replies. I moved to Florida in 2019, however I was living in NC and I saw a doctor who I loved there at UNC in Chapel Hill. Anyway, I just had a bad feeling about this doctor, and you're exactly right, having the right one who knows about J-pouch is the way to go. I have heard about the doctor at Mayo Clinic that you mentioned and I am trying to get an appointment with him. I am scheduled to have the pouch exam and an upper endoscopy on November 28th and I think... [ more ]
CTBarrister Yikes! I think if you have a J Pouch you really need to find someone who has very good experience with them. I know it's tough for some members who live in the boonies to find J Pouch experienced specialists, but you absolutely have to have one if you have a problematic pouch. [ more ]
ElizaB Hi, To avoid wasting your time, you might want to ask if the person you're scheduled to see has any experience with J-Pouch patients. When I went to Borland Groover a few years ago, the physician I saw was pleasant but had little to no knowledge of J-Pouch issues. When he told me "he had heard of it"... I knew I had to keep looking. I'm now with Dr. Farraye at the Mayo in Jacksonville. [ more ]
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J-Pouch ForumsGeneral Discussion
2nd year post takedown
C Chook2
Sonofx ❤️
Former Member Just chop your veggies in small pieces, throw away the hard fibrous parts, and then cook them very well. They will get very soft, and become easy to digest. For example, I buy those bags of crunchy salads that people eat raw, with cabbage, brussel sprouts etc, which are usually chopped into very small pieces, add some water and slow cook those salads until they are very soft and eat them with the salad toppings. Healthy people eat them as salads, I eat them as well cooked vegetable dishes. [ more ]
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J-Pouch ForumsGeneral Discussion
Sharp pains right side under ribs
MiguelitoMiguelito
Pouchomarx i would check liver labs. PSC is a rare liver disease where it affects your bile ducts. Its more common in people with UC. I have some bile ducts that are dilated in my liver but with PSC it usually is dilations as well as strictures. My doc just said yeah we are more suseptible to this disease but only if my liver labs go sky high he would look into other imaging on liver to see. past few years my liver labs have been ok but its always in the back of my mind... [ more ]
Jaypea I'm thinking more diaphragmatic irritation or intercostal involvement than abdominal. I wonder if there is scar tissue around your vagus nerve or some of the diaphragmatic muscles causing irritation? This would account for the pain with respiration. [ more ]
SteveG Did you have your liver's blood levels done to check for hepatitis? [ more ]
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J-Pouch ForumsGeneral Discussion
Can we digest tablets?
F Fredz
New577 I think everyone is different and you have to experiment to see what works and what does not, extended release tablets are a disaster for my jpouch function. even b12 tablets ( not extended release) causes gi distress so I switched to sublingual. what I am trying to say is that your body will tell you what works and what does not. I did not listen to my body early on and suffered a great deal. No doctor had any idea either that medicine was the major cause of my poor jpouch function early on. [ more ]
SteveG One example is budesonide (e.g. Entocort) which is designed for delayed release in the terminal ileum (and in the ascending colon for people with a colon / MC). For me there are usually no problems with efficacy, except when I have really bad diarrhea. [ more ]
Scott F I’ve done some experimentation with extended release medications, and most of them seem to work just fine for me. I think they may fail for folks with rapid transit times, and I’d probably avoid formulations designed to target the ileum (or of course the colon). This is tricky since that information can be hard to find. Hopefully the prescribing doctor will know, and a quick conversation can help. [ more ]
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J-Pouch ForumsGeneral Discussion
Anti anxiety meds with jpouch
I Idifmb
lclassen I was on Klonipine (clonazepam) for several years for anxiety. I didn't notice any changes with my Jpouch. It's in a different class than SSRI's. I have also taken several other depression meds with no effect... Currently on Lamotrigine, Trintellix, and Trazodone and all seems to be working just fine. Hope you are able to find something that works for you 😊 [ more ]
Jaypea I have used quetiapine for years both pre and post pouch. I have managed to drastically reduce my dose but can't quite do without it...yet. You have made me wonder if I came off it all together would I have more control over my pouch at night? I can't do that just yet as I rely on the quetiapine to function on a daily basis but it is food for thought. [ more ]
rnj2010 I haven't looked up the side effects of the med you are on but I know some antidepressants (even in the same category, say ssri's) can cause increased motility while others the opposite. So, you can work with your doc to find the right one if you feel the prescription option is best for you. Have you had your B12 and other B levels checked? [ more ]
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J-Pouch ForumsGeneral Discussion
New Jpouch-er
S snash1108
Former Member ❤️
Rudy Thanks, roseviolet. That’s why I kept harping on the cotton ball. I know it might not help everyone, but it might make a huge difference to one person. I know it has for me for the 41 years I’ve had my J pouch. 😊 [ more ]
roseviolet Rudy, there is no such thing as a weird tip on this website. Thank you for your contribution. You never know what will help someone. --Rose-- [ more ]
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J-Pouch ForumsGeneral Discussion
Pain/Uncomfortable in the Morning
K KOB
PouchLogic I don't know if it's the same but I always get uncomfortable in the morning after waking up. It's not pain but discomfort and doesn't allow me to sleep in unless I get up and have even a tiny bm. The morning seems to be worst, during the day that amount of discomfort wouldn't really bother me. [ more ]
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J-Pouch ForumsGeneral Discussion
Positive For Covid and Remicade Infusion Cancelled
CTBarristerCTBarrister
RossG Chiming in here.... I've been on Remicade since 2015 and have been very careful re Covid, living like a hermit mostly, not easy on the marriage. Finally got Covid 3 weeks ago after a trip. Had a rough 5 days with but it never got into my lungs and my oxygen saturation levels never fell below normal range. Headache, body aches, loss of smell and night sweats for two weeks. I'm over it now after 4 weeks, but lost 10 pounds, mostly I think because food is not very appealing when your sense of... [ more ]
CTBarrister Still Standing, Thanks for your post. I am also glad that I do not have Covid and didn't have to call my PCP to get an Rx for Paxlovid. In 7 years of getting Remicade infusions I only had an infusion delayed once- in April 2019 I developed viral pneumonia, which was diagnosed on an x ray showing fluid in my lungs. My GI doctor said I had to be at least a week without symptoms before they would put me back on schedule. I also had to get a second x ray showing the pneumonia was gone. I think I... [ more ]
Still Standing While I'm not happy with the false positive COVID results and all the confusion that caused, I am very thankful you don't have COVID and that your infusion of Remicade could be put back on schedule. What a crazy world we live in [ more ]
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J-Pouch ForumsGeneral Discussion
Advice from individuals with multiple ileostomy attempts
Uncle PocketsUncle Pockets
Uncle Pockets This would be for pouch formation, and I had a loop in my case. It seems like it’s Crohn‘s, and I’ve never had to remove anything outside of what was done during my first surgery when the J-Pouch was inserted. I appreciate your input and any additional information you’d like to add would be nice here. [ more ]
Pouch2021 Hi UP, Are these temp ileostomies loop or end ileos? I’m assuming loop. I had a hellish time for my 6 months with a loop—so many SBOs, dehydration requiring IVF, etc. The end ileo was much better behaved. Having multiple loops shouldn’t have any bearing on the length of small intestine you’re working with, though I guess theoretically having multiple end ileos with attachment/detachment to/from a pouch may eat up a bit of ileum. Pouch revision can also use up more SI though they can... [ more ]
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J-Pouch ForumsGeneral Discussion
Second time around
cbearcbear
Sara Marie ❤️
Johnny J-pouch J-pouch in 2014, roughly 8 years with a well functioning pouch. I think it’s been almost 2 years since I commented or reviewed topics on this site. I find it therapeutic and should review it routinely to reinforce the fact that other people battle these same issues on a daily basis. I have been battling rectal fistula for this past 2-year period; 13 separate surgeries and 4 separate Setons installed; this latest 13th, two weeks ago was a second attempt with an advancement flap to seal up the... [ more ]
Kushami ❤️
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J-Pouch ForumsGeneral Discussion
What do you tell employers
K Katbell11
Former Member You are welcome! And from what I read, I think you are doing everything perfectly!! Having everything all laid out definitely makes it easier to have sympathy and Grace. [ more ]
skn69 Great question, not sure what you want 'people' to know. I received an official handicapped status in 2009 thanks to a benevolent GP. I went through the hoops to get it, but once I did, I just put the official initials on my resume...(I live in France so they give you initials which means that you have an official disability status). That status allows me the freedom to tell or not. It also means that HR can ask me what I need but not what is wrong with me (I did disclose). My boss knows... [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
Stricture?
J joebucket20x6
joebucket20x6 Scott, the Miralax was a great idea. A full dose last night softened things up enough to allow for a pretty comfortable bowel movement. I’ll spend the next couple of days trying to find a dose that I can use for consistent relief without overdoing it. I appreciate the suggestions. [ more ]
joebucket20x6 Scott, thanks so much for your response. Well, I have 100% aggravated some hemorrhoids. It’s not too bad, but it is definitely noticeable. If that is the culprit, I’m in a very viscous cycle. I try hard not to strain when I empty my pouch, but sometimes I cannot help it. I am generally waiting until I have a full pouch to empty it, but I have admittedly been fooled by gas lately (which was blissfully nowhere to be heard/smelled while I was on the antibiotics). So, I am still relearning a few... [ more ]
Scott F This isn't a reported side effect from Entyvio. It's possible that your stool got too firm to easily pass, without any structural problem like a stricture, though the problem apparently persisted when things loosened up a bit. Perhaps your attempts to empty have swollen some hemorrhoids, which could add some difficulty in emptying. Things you could consider doing (don't do them all at once): Stop any bowel slowers (Imodium/Lomotil/opiates) Add more fluid, especially if your urine is dark. [ more ]
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J-Pouch ForumsGeneral Discussion
Urine tests
K Kushami
Kushami Yes, it’s hard to describe to a doctor what normal j-pouch BMs are like. We need our own scale! [ more ]
Scott F I prefer to avoid the word “diarrhea” for J-pouchers, because I think it’s ambiguous, ranging from perfectly appropriate soft stools to catastrophic fluid loss. In any case, the “normal” way diarrhea lowers electrolytes in folks with colons is by running fluid too rapidly past a very large membrane (the colon). This won’t work exactly the same with a J-pouch, but the key factors (liquid stool and rapid transit time) will still operate to some degree. The simple point is that we need to stay... [ more ]
Kushami Thanks, Scott. I just realised that the doctor prescribed a medication at the same time that causes diarrhoea, so now I don’t know what to think. Even in a “normal” person, it seems like this medication side effect could disrupt a sodium urine test. Would the electrolytes lost due to diarrhoea, including sodium, be through the bowel? (That’s probably obvious, but I’m feeling a bit brain fogged at the moment.) [ more ]
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J-Pouch ForumsGeneral Discussion
Help finding a new Gastroenterologist.
CG Corey G
Corey G Hi Scott and Eliza. Thanks for the sound advice. I respect Mayo and got my UC second opinion back in the 80s. Unfortunately, around 10 days ago they said they were not taking Medicare advantage plans and to enroll in regular Medicare with supplement plan which doesn't work for me. I'll keep digging and researching. [ more ]
ElizaB Hi Corey, After someone on this site recommended him to me, I recently started using Dr. Farraye at the Mayo Clinic in Jacksonville. He transferred here from one of the large Boston hospitals and seems very knowledgable about J-Pouch issues. The entire Mayo organization was top notch. [ more ]
Scott F I have family in St. Augustine, and for sophisticated medical care they drive up to Mayo Clinic in Jacksonville. If no one has a specific referral for you that might be a good place to start. [ more ]
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J-Pouch ForumsGeneral Discussion
Coconuts and Crohns
SadieM1210SadieM1210
skn69 I drink coconut water for rehydration and have started using coconut sugar but other than that, not enough to give me any sort of positive or negative results. [ more ]
Sara Marie I use tons of coconut products, but a person must proceed with caution as tree nuts (including coconuts) are a common allergen or irritant. I personally have never made any direct correlation with coconut and gut issues. I use coconut creamer or oat milk in my hot tea drinks because cow milk definitely causes irritation and inflammation for me. I also drink coconut water because it has a lot of electrolytes. I usually mix it with home-made veggie juices (carrot/celery and... [ 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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