Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsGeneral Discussion
C Diff from Rifaximin?
FM Former Member
Former Member Thanks! It really does not smell that bad so idk. [ more ]
Jaypea All you need is my nose to diagnose C Diff. I'm a paediatric ER nurse too and I just have to smell the diarrhea (eww gross I know) to know for sure. Please have a stool sample done to rule it out and make sure you stay very well hydrated. Wash with soap and water as alcohol based hand rubs will NOT get rid of C diff (family members too as you don't want to spread it). Good luck. [ more ]
Former Member Agreed, thank you so much Rifaximin is used to treat c diff so it would seem strange that you could get it from it. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
High hemoglobin and hematocrit
WinterberryWinterberry
Winterberry Thank you, Jaypea. [ more ]
Jaypea In order to interpret a complete blood count for a hematological diagnosis you need many more results than hemoglobin and hematocrit. Things like MCV etc. Your body has been through a lot over the past little while and it is going to take some time to settle down. It sounds like you are doing all the right things and monitoring which is so important. Keep up the good work. [ more ]
Winterberry Thank you, Scott. My doctor did not seem concerned. In fact, she did not call me to tell me the results of my blood work, which were mostly in range. I asked the secretary to send me the results and that’s when I saw the h and h in the “elevated” column of numbers. You’re right — it is not (outrageously) elevated, so I won’t worry about it. I am diabetic so I am watchful for anything that might put me at higher risk for heart disease, stroke, etc., and the number jumped out at me. One number... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Jpouch anismus
T TomU
NikiasVW Hi, is there any follow up on this topic? As I believe I have very similar complaints... [ more ]
TomU Hi Jeane i don't think my Anismus is caused by a structure as I've had an MRI already and nothing like that was spotted. can you tell me more about your potential surgery? I thought any cuts to the muscles that are causing the tightness would risk incontinence? [ more ]
jeane Hi Tom, I have this same issue and mine is due to scar tissue at the anastomosis connection. I am due to Cleveland Clinic for some additional tests as well. I have a very had time emptying my pouch and I also have multiple fissures and anal stenosis due to this. I am not sure this is your issue or not. I have had several dilations and my anastomosis always closes back up. I am looking at some surgery to cut into the connection or a possible pouch redo if that is what Cleveland suggests. I... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Psoriasis
HeatherF21HeatherF21
Mysticobra I had it on my scalp before being diagnosed with uc. Years before. Now that my colon is gone I have no psoriasis but I do have other skin issues. Cannot remember what it's called. I get these red bumps. Itchy. Omgoodness. I have a cream for it. But over the last few months I've been having other skin issues. I have no idea what's going on. Dry skin in some areas. And some areas it just plain itchy. I don't scratch. I know better. But I am going to have to go see a dermatologist soon. My... [ more ]
Sara Marie Unscented only for you. [ more ]
AllyKat Fragrance/parfum [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Crohns Diagnosis after J-Pouch surgery
BlokeBloke
ljh824 Starting Skyrizi next week. Fingers crossed. Remicade didn’t work. [ more ]
AllyKat I have been on Entyvio for 7 years for inflammation but due to a new recent diagnosis I might not need it so this is the new problem, to continue or not? And yes in the beginning I was extremely nervous about taking it and now I’m extremely nervous to possible stop. [ more ]
DarrenKS My story similar to others here:longterm UC followed by JPouch 2001 with pouchitis pretty much whole time after. Diagnosed in past couple yrs with Chron’s. I tried Remicade and had adverse reaction (severe psoriasis) and now on Stelara. Only moderate control though - fecal calprotectin levels still >400 and I am taking Stelara every 30 days (double the typical dose). So yes, inflammation still there…. I am told the drug Skyrizi (link below) may be better suited - will hopefully make this... [ more ]
See all 15 replies...
J-Pouch ForumsGeneral Discussion
Pouch twisting
J JulieT
AllyKat Thank you [ more ]
ceew https://www.j-pouch.org/topic/...0#704880547818120310 I’m glad they found out what the problem was and I hope it has been taken care of. [ more ]
AllyKat Turns out I had internal hernias one dated back from a defect from the original pouch surgery 23 years ago. I hope this is it. I hope you find your answers. It amazing that with modern ct scans, mri, scopes etc it can take years to find the issue. [ more ]
See all 20 replies...
J-Pouch ForumsHelp! Need advice now!
Partial Blockage
GaylaGayla
AllyKat Never had resection. Diagnosis floppy bowel now in question? It is a real pouch problem though. The first twist and internal hernia were a separate issue that are holding. this is new issue found. I had a internal hernia with bowel looped around pouch from a menestry (spelling?) defect from original surgery 23 years ago. I mean 23 years, really? And not one test showed this and I’ve had many! [ more ]
Stolemycolon This happened to me a year after I had my take down. It started as a sharp pain in my left groin and then I couldn’t stop throwing up. I went to ER, the scanned me and I went into emergency surgery to correct my twisted small intestine. My surgeon told me that had a come. Even a day later I would’ve lost my couch because the tissue was dying. It had turned black. Luckily it was a successful surgery. I’ve had about two blocks since, one of which was found and I didn’t know because I didn’t... [ more ]
Gayla ❤️
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
RV fistula again??
cbearcbear
chili123 I hope you feel better soon. I know the up and downs of this is hard [ more ]
cbear Hey hunni, I’m so very sorry you’re going through this too! I had surgery on the 9th to return to a loop ostomy. Does your surgeon favour a stoma to address the fistula? I found convex bags were a life saver with issues I was having with adhesion. Claire x [ more ]
Unhappy Hi Cbear hope you're doing fine. I identified myself with you since I have a rv fistula and I'm desperate because I'm scared and so afraid of being put a temporary ileostomy bag. Back then when I had the bag it was a nightmare. The bag never stuck to my skin regardless of different creams, bags etc. Waiting for your response. Take care [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Immune system
P PedroMadruga
PedroMadruga CTBarrister, Scott, and Sara Marie thank you all for your knowledge and advice, it is much appreciated. I now have a better understanding of the immune system. I will keep taking my vitamins and supplements with the addition of celery juice (I used to juice daily until my colon burst which led to creating the pouch) [ more ]
Sara Marie Meanwhile you can support the spleen, which is a major player in the immune response, by cooking your veggies, chewing your food well, practicing good food combining, avoiding refined sugars and starches, etc. When we make digestion easier, we free up energy for other parts to use. When I'm having a strong immune response, my spleen literally hurts. I take vitamin C and zinc to help relieve some of the load on the spleen, but only for a while, not all the time. Probiotics can help, too. And... [ more ]
Scott F There is a large industry devoted to the notion that the immune system has a simple level that can be artificially weakened or enhanced. It’s certainly true that there are diseases and medications that can disable specific component of this complex machine, and thereby impair some of its responses, but it’s much less true that it can be “boosted” in a useful, general way. It’s worth remembering that inflammation is an immune system response (and usually a useful one), but most of us don’t... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Update on old pouch with complications
AllyKatAllyKat
Kushami ❤️
AllyKat Thank you Sara [ more ]
Sara Marie Thank you for sharing that information. You have really been through the wringer, as a lot of j-pouch owners have. I'm so sorry about your kitty. Cats can know us like no one else can. I was so connected to my cat that was with me 18 years that when she died it felt like a part of me was missing. I still feel it. It's been 12 years. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
PAIN IN THE NEW POUCH
P Pata
Winterberry The pain might be from tissues swelling and the internal “wounds” trying to heal. I felt pain before and after my reversal / takedown, what you call “reconnected”. Remember your insides have been manipulated, cut in half, moved around your pelvic cavity, and stapled or sewn up. Your tissues are in shock! I felt electric shocks in my stomach for weeks while I was healing, similar to static shock in winter time. My surgeon and the pain management team told me it was tissues and nerves knitting... [ more ]
New577 Mucus secretion is normal as the pouch tissue is alive and waiting for stool and the normal mucous secretions will help things flow. as far as pain in the pouch goes, I did not experience that, however since you are getting close to takedown the surgeon usually orders a pouchogram contrast study to check for any leaks or strictures prior to your final surgery. have you spoken to surgeon to inform him of this issue? [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Time to get back to solid output after partial removal of bowel?
K KatSydney
Maverick Plus Trial and error for sure. Glad to know things are improving!🙂 [ more ]
KatSydney Thank you for your reply @Maverick Plus My output is getting better though definitely a case of trial an error... something I think we all know too well! [ more ]
Maverick Plus I have not had any resections, but I have had my share of obstructions. If you have watery output, you are probably not blocked. If you were blocked, nothing would come out. With abdominal surgery, the body has had a shock to its system, so it would take many more days to recover unless it was done with a laprascope. I hope that helps. Maybe someone whose had a resection could say more. Sending healing wishes to you. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
VSL 3
D DJJ2019
Sara Marie Do you think that if you did take it you'd never get pouchitis? I don't know if I've ever gotten what people call pouchitis, but I know I have inflammation and it's systemic and definitely there is low level inflammation in the pouch often. I'm curious about your habits anyway, being a patient of Dr. Shen. I wonder if you have picked up any other tips from him? [ more ]
Pouchomarx believe what you want, I am going to side with Dr Shen who has done the greatest amount of research on jpouches in the world. Not to mention he is the only GI in the world that has pioneered several scope procedures of the pouch to try to avoid surgery and fix many complex issues of the pouch. needle knife therapy and banding procedure for floppy pouch and prolapses just to name 2 [ more ]
lclassen ❤️
See all 18 replies...
J-Pouch ForumsGeneral Discussion
Gastritis or ulcers & NSAIDs
skn69skn69
skn69 Thank you Scott, I have stopped, for the most part, carrying my groceries and gave in and bought a buggy...but occasionally, there is just too much to fit into the buggy! Or when I come home from work I pick up a few things (too many) and carry them...it is a juggle with books, computer, h.w. etc I will try not to! I've finally given in and seen the school doctor who has put me on 'distance work' whenever I do not have classes on campus or an obligation to be there (it is 2hrs on... [ more ]
Scott F Pain management without NSAIDs can be difficult. You might get some results by combining strategies rather than focusing on one. Here are examples of the kinds of things I mean: Tylenol should be safe for you if your liver is okay. I think most people get some benefit, even if it isn’t the whole answer. For arthritis I take Glucosamine Chondroitin. It’s far from a miracle, and the best data is in knee arthritis, but I think it may have helped my hands a bit. I take NSAIDs (Celebrex) only 2-4... [ more ]
skn69 Thanks Scott, I will look into it... Ideas for pain management? I already do physio 2xs/week for years, use heat packs nightly under my spine, execise 5xs/week to maintain muscle mass and flexibility...not sure what else I can do to maintain myself without hurting myself even more...I walk everywhere although fewer kilometers recently and pull a buggy or carry all of my groceries 1 mile each way (yes, a very active lifestyle)...as years go by, I find that it takes longer each time to 'heal'... [ more ]
See all 7 replies...
J-Pouch ForumsK-Pouch Korner
Flex Sig with K-Pouch?
marriedguymarriedguy
jan15 like sharon I don't get anesthesia for my scopes. one reason is needing to be picked up by somebody, which doesn't work for me as not in my home town. but biggest reason is I want to see pouch lining condition, and be able to communicate with doctor during/after procedure. this is especially helpful if there is a problem. jan [ more ]
marz I go to dr Shen yearly for my scope. He uses miralax for prep, 2-4 ounces is always enough. He also started me on entivyo for pouchitis and it is still working after 2 1/2 years.(local dr does orders for this) most local GIs know Shen is the expert!! Previously I was on the rotating antibiotics and ended up with c diff. I wonder if Dr Shen still does video visits?? He said he really enjoyed doing them during Covid. Maybe you could get another opinion from him?? good luck. [ more ]
skn69 I only get scopes as needed usually for a pouch twist, a valve problem or leakage (normally due to my pouch falling off of the wall). I stick to a light meal 24hrs prior to the scope and no fibers. I switch to clear fluids after 6pm. That is it for the prep! No bowel prep, no magnesium whatever. As for the scopes, I have never had any anesthesia since I've had my K pouch. I watch, comment, direct traffic so to speak. They use a simple child's scope so as not to injure my pouch and usually... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
leakage during sex tips ???
PouchomarxPouchomarx
Sara Marie Or....a slip out? [ more ]
BK 123 I load up on Immodium, make sure not to eat a few hours beforehand, and obviously empty my pouch right before. Takes the spontaneity out of things but I'd rather prepare than have a slip up. [ more ]
New577 I have used a cotton ball since my takedown. I have a minor minor amount of leakage and its a routine I have gotten into. it also helps avoid embarrassing situations. [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
Is pouch empty?
EI Eric in Seattle
Mary4130 Are you using lubricant? Enema or irrigation has been the best answer for me after stg 3 colon cancer! [ more ]
Mary4130 Re: Is pouch empty? [ more ]
New577 Hey Eric, it took about 8+ months before my pouch empties in one sitting. Before that time, it would constantly fake me out. i would clean up and then get the urge again. Nowadays, I take Imodium 3x/day to lessen butt burn. Sometimes, but not often, it will constipate me and I really have to sit along time to get things going. I like looser BMs, as they tend to clean out my anal canal and not leave stool and subsequent irritation in there. I am not a fiber person, but my surgeon did tell me... [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Anyone use warm enemas to flush pouch?
J jeane
Pouch2021 Depends on how full the pouch is. In the AM with a full pouch I usually get about 1/2 to 2/3 of a fleet bottle in (using warm water). I often do 2 enemas back to back and can get most of the bottle in on the second go around. I just fill the pouch until I feel a pressure like sensation. Sometimes if I insert too much I get an uncomfortable pinching pain in my left lower quadrant which goes away immediately when I empty. [ more ]
Mary4130 Are you just taking a small amount of water..a cup or so? [ more ]
Pouch2021 I try to hold in the warm water as long as I can so it has a chance to loosen things up (sorry TMI!). I insert the enema kneeling on all fours. If I’m at home I do some gymnastics after to move the liquid around but if anywhere else I get off my carefully constructed paper towel mat ASAP. Just like with UC, I’ve learned where the hidden, cleaner bathrooms are at work. I also make sure x2 that the door is locked to hopefully avoid sharing my bare ass, down on all floors, with my colleagues. [ more ]
See all 22 replies...
J-Pouch ForumsGeneral Discussion
New Member
LR Lili R
New577 I think you are in good hands. if they are performing techniques like chromo, etc they are on the cutting edge. while we cannot predict the future, being with the right care team will help mitigate nasty surprises. you will have plenty of time to worry about surgical decisions when the time comes. In the meantime: Dont worry, be happy!! [ more ]
Lili R Great advice! I feel like I have been given a wake up call. I plan to take better care of myself and keep my stress levels down. At the same time my I’m prepared for the possible eventualities. [ more ]
New577 Hey Lili, glad to read you are taking your time with this. the first time high grade dysplasia showed up in my rectum, the GI doctor freaked out and basically fired me and referred me out to an expert (my current) GI. New guy repeated the colonoscopy and the HGD was gone. We did not talk about colectomy again for 4 years until lesions stated appearing. these things can take a long time to manifest, so caution and prudence are in order, which gives you additional time to evaluate your options... [ more ]
See all 12 replies...
J-Pouch ForumsHelp! Need advice now!
Enemas
P Pouch2021
Mary4130 Lars is lower anterior resection syndrome. [ more ]
Mary4130 LARS is lower anterior resection syndrome. It happens after cancer rectal surgery. It’s 😢 [ more ]
LV2Hike I now mostly use a handheld enema bulb, just about daily, so it's totally safe according to my doctor. He also said it's OK to lubricate with soap. This is the one that worked out the best for me. I use it in the shower while standing up. I can't see doing it anywhere else without making a horrible mess! https://smile.amazon.com/gp/pr...le?ie=UTF8&psc=1 [ more ]
See all 21 replies...
J-Pouch ForumsGeneral Discussion
Did Biotin work for your hair?
WinterberryWinterberry
grateful Hi Winterberry, I take superior Source Biotin 10,000 mcg microlingual (dissolves under your tongue) my hair got really thin after the surgeries due to malnutrition. i also use rosemary oil mixed with some hair oil in a dropper on my scalp. i eat lots of protein (chicken, beef, shellfish (great source) and protein shakes made with whole grass fed milk. The pouch doesn’t like the protein shakes that much so I try to sip it slowly all day. my hair doesn’t fall out anymore and it has gotten... [ more ]
kta I have been taking Biotin for about a year now. It is also the Costco dose. I do not see a difference in my hair, but my nails are a bit stronger. [ more ]
ljh824 Not sure what's in it, but I started using Nioxin after all my surgeries. Worked wonders. My hair is fuller now than in high school. [ more ]
See all 4 replies...
J-Pouch ForumsPouchitis
Pouch emptying/washing and possible relationship with pouchitis
A Arnaud
Mary4130 Never had pouchitis but do get mucus from time to time. I have problems emptying my j-pouch and have used anal irrigation which was a game changer…but is it safe with a pouch? I don’t want to perforate it! [ more ]
Jan Dollar OK. Hopefully, I don't sound too much like an encyclopedia, blathering on and on and on... Jan [ more ]
Arnaud Thanks ! Actually I unfortunately have a fibrotic stricture which seem to be very hard to dilate. By the way I'm going to create a new thread about this and you're welcome to contribute to it if you have things to say about it ... As I'm sure you will, given that you're our "living encyclopedia" on this forum :-) [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Irrigation tips/advice
FM Former Member
Mary4130 Knowledge is power. I ask anyone who has some opinion regarding irrigation. I don’t use all the info but I can see what others do to maintain their j pouch [ more ]
Mary4130 So you’re saying if you have a j-pouch to not do a colonic or colon irrigation? [ more ]
Former Member Thank you for such a sincere reply. I’m sure I also speak for others when I say; we totally understand what you’re going through, how you’re feeling and how such issues can affect your mood and personality; however, this is so difficult to convey or translate in text and via a web forum. We’re here to help, best we can. Thanks [ more ]
See all 22 replies...
J-Pouch ForumsGeneral Discussion
Stool Colors
ValenValen
Winterberry For me, it depends on what I’ve eaten. Pasta, potatoes, fish, chicken or rice makes light colors, beets come out raspberry colored (so don’t be alarmed). When it is darker colored then I’ve eaten meat. I also see green when I’ve had lots of green vegetables. This morning I ate a blueberry muffin and by lunchtime I saw fully formed blueberries! [ more ]
Sara Marie Beets cause alarming or pretty poops, depending on how you look at it. I used to notice that the lighter colors were more evil, but now that I have psyllium and oatmeal every morning, I no longer associate light colors with burning. It's that sticky, syrupy texture that is most associated with burning for me (and that can definitely be light colored). Oatmeal and psyllium help make clean poops that don't require a lot of wiping, and oatmeal poops are light colored, but not burning. [ more ]
Jaypea Mine is totally related to what I have ingested and how long it took to transit. Anything tomato and someone else would think I was bleeding to death. Mine rarely gets to the dark brown stage as I follow a very low carb/sugar diet and have a rapid transit. [ more ]
See all 4 replies...
J-Pouch ForumsFAP Forum
Whipple surgery at 30 years question
BorislavBorislav
Len78 No I didn’t drink anything . Lol borislav. my doudenom was just clean of polyps I have polyps carpeted in the stomach though. Diets don’t reverse fap its inherited a defect occurs in chromosome number 5 .. a mutation and error in the genetic code causes the illness to manifest. len [ more ]
Borislav What did you drink to make your duodenal polyps go away after you gave up whipple surgery or did your duodenal polyps go away on their own just by dieting [ more ]
Borislav Why cannot remove only duodenum not other parts.. Is have surgery to remove only duodenum? [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Physical Activity
B BK 123
Former Member ❤️
Daleer I've had a j-pouch since 2006. I regularly lift extremely heavy weights at the gym with maximal effort and have competed in weightlifting competitions since getting my j-pouch. I'm sure it depends on the construction of your j-pouch, but for me the j-pouch has never been an issue or hindered me from maximal effort exertion even to the point of bursting blood vessels in my eyes. [ more ]
BK 123 Thanks all. I got the clearance from my surgeon to ski and get back to playing soccer. Hoping you all have a happy holiday and New Year! [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Covid/Paxlovid
allswellallswell
rcrossco_1 Any of you guys get Paxlovid and not the vaccine? [ more ]
allswell So I took the paxlovid again because I got covid for a second time this past week. I again got the same symptoms, really bad butt burn and more frequent runny stools. It's crazy, but I had forgotten about starting this thread back in May. I had even forgot about the possible side effects I experienced the first time. Now I am wondering if my jpouch never really got that much better after my initial post. I did end up giving up coffee in August which really seemed to reduce to the butt burn... [ more ]
CTBarrister I think that is probably all correct. However, because of the positive test, I cannot go to work, must continue working remotely from home (which I hate, because I cannot do everything I need to do at home), and I am going to miss my firm's holiday party tomorrow night, which is a MAJOR bummer. I also wanted to tell everyone I know exactly how and why I got Covid and to caution everyone on this board, because we are now in the midst of what appears to be the usual post-Thanksgiving Covid and... [ more ]
See all 20 replies...
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 ]
See all 26 replies...
J-Pouch ForumsPouchitis
Marijuana and Pouchitis
A Adam21
Sara Marie I have noticed that if I use marijuana products regularly I get an increase in inflammation when they have worn off. I think moderation is key. I have noticed no noticeable slowing down of the guts with it, though. Also, sometimes chamomile is listed as a laxative. (I'm not yelling with the bold letters, I was just enjoy the formatting options which I had not noticed before.) [ more ]
CTBarrister I completely agree with what Bill R has posted. Marijuana or opium or any bowel slower isn't treating the underlying cause of the frequent BMs (which is inflammation). Bowel slowers, when used excessively, create less BMs but more bacteria in the J Pouch. Therefore one must strike a balance between slowing the bowels down and keeping the pouch bacteria and inflammation free which are completely separate (and conflicting) endeavors. I am saying this as a regular user of marijuana sleep... [ more ]
PSJ I was on 30-40 pills a day and biologics and nothing worked so I had my colon removed and a new jpouch. During the last months before surgery it was the ONLY thing that allowed me to have a 2-4 hour break, it also gave me an appetite and helped me sleep. I am still having occasional issues (pouchitis landed me in the hospital for a week). One story I tell doubters is I was driving and thought I was going to have an accident. I would NEVER suggest this but it was crapping in a cornfield or... [ more ]
See all 11 replies...
J-Pouch ForumsHelp! Need advice now!
Having issues with pain and not going very much
KelliKelli
Maverick Plus I hope you've seen a doctor by now. Has this issue been resolved yet? [ more ]
Gayla From my experiences with full blown obstructions and partial obstructions, it sounds like that is what is going to me too. I’m no dr though. I hope you are feeling much better now and that it passed on its own. [ more ]
AMB @Kelli , Hope you're already feeling better! If not, maybe time to check in with your doctor. Are you nauseous? Sounds like your abdomen feels distended? Have you experienced an obstruction in the past? The pain and tightness you describe reminds me of partial obstruction. if partial obstruction is suspected, Doctor might suggest clear liquids - plenty of it - for a week if you can stand it and then regular liquids. When I had a partial obstruction that didn't clear for several days my GI... [ more ]
See all 3 replies...
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 ]
See all 2 replies...
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 ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Anyone tried Xifaxin/Rifaximin and can we absorb the tablets?
FM Former Member
Former Member 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 ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Quality of life is awful
C Carwyn
lablover ❤️
New577 Hi Carwyn, I am glad to read you were able to get some improvement for your situation. 2022 has been a year of healing for me, and I leave the year in better shape than when I entered it. I, like everyone else here, have a routine, when followed, gives me a pretty good quality of life. i do wish I could do without all of the pills, the creams, the baby wipes, the bidet, eating times, eating quantities, but sadly any deviation reduces quality of life. I am grateful for all of my progress and... [ more ]
AndyY Hi! sounds like a lot that I’ve been going through since my illeostomy takedown surgery in September. I found that when I take Metamucil 1-2x per day and pop Imodium multi-symptom medicine like tic-tacs (8-10 per day) I’m able to function as normally as I can. I’m able to live, work, sex etc. Also it feels like my anus is on fire or I’m passing shards of glass. I found that taken a Sitz bath 2-3x a day for 10-15 minutes really helps. I make the water as hot as I can tolerate. You can find a... [ more ]
See all 15 replies...
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 ]
See all 26 replies...
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 ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Pouch Surgery
H hpinder67
New577 Hi, I had a hematoma near my takedown after my emergency redo (caused by a fistula). Along with a major UTI, they chose to see if the hematoma would resolve itself, rather then intervention. it did resolve after about 8 weeks on its own. [ more ]
See 1 reply...
J-Pouch ForumsK-Pouch Korner
Urgent: Need reviews/info on Dr David Dietz, Cleveland
S sldrx
Robert L. Boyer M.D. I am a 70 yo retired physician diagnosed with severe ulcerative colitis at age 15.I experienced the ulcerative colitis hell until I was 18 at which time I recieved a Brooke ileostomy (bag) in 1970.I was happy as a clown in that the U.C. Joint arthritis,weight loss,etc. disappeared. For cosmetic concerns I recieved a K pouch in 1979 at the Mayo Clinic and a redo in 1980.It served me well for 40 years until I had a valve slippage in 2021. After doing some research I opted to have Dr. Dietz... [ more ]
Big D of 3 Hi Jan15 - I’m converting from a loop ileostomy, which I’ve had for about 7 years. I’m about 45 and have had Crohn’s since I was 20, although it has never been in my small bowel — which makes the k-pouch a viable (and the only) option for me to get rid of my bag. I’m a very active person and have been on a quest to get rid of the bag ever since I got it. I have wonderful doctors at a world class IBD center, but nobody mentioned the K-pouch option until I did a virtual second opinion with... [ more ]
jan15 Dr. Dietz did my conversion from J-pouch to K surgery in 2015. I now go to NYC/Columbia due to convenience and just for routine scopes. If I needed a major revision I would go back to Dr. Dietz. He is fantastic. Every Doctor who has scoped my pouch comments on how well-made it was. Many of the Cleveland clinic K pouch doctors have left and are in NYC. What you hear is it’s past reputation. Dr. Dietz had been at Cleveland clinic. are you converting from J to K? [ more ]
See all 10 replies...
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 ]
See all 5 replies...
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 ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Anyone used Devrom for gas and bloating?
FM Former Member
Former Member Thanks! [ more ]
EF I use a generic chewable from Target. Their Up&Up brand it has simethicone as its base. Hopefully that will help you!! I have been trying to keep all meds to pill or chewable (non gummy). I don’t have a stomach so it certainly helps in absorption. [ more ]
See all 2 replies...

Join Us!

Founder, Creative Director & Web Master

William J. Johnson
bjohnson@j-pouch.org

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.

Forum moderator and advisor
Jan Dollar R.N.

 

 

 

 

General Disclaimer

 

This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.


Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).

Confidentiality

Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.

 

CCFA

The Crohn's & Colitis Foundation of America,
Philadelphia, Delaware Valley chapter, is located at
521 Bustleton Pike, Feasterville, PA, 19053.
Tel: 215-396-9100


National CCFA headquarters are at,
396 Park Avenue South, 17th floor
New York, New York 10016-8804
Tel: 212-685-3440    800-343-3637

 

Join Now

Already a member? Sign In

Online Now

Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×