Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsHelp! Need advice now!
SUTAB for pouchoscopy
K Katkando
AllyKat Clear liquids the day before. That’s it. [ more ]
Katkando Thank you all so much. I really appreciate all your comments and definitely will rechecked this out. ❤️ Kathy [ more ]
roseviolet Mine was clear liquids the day before such as apple juice but nothing red or purple. The morning of the procedure, empty saline from Fleet enema bottle and refill with tap water twice. The product you've been asked to take sounds way too harsh. [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Blood in stool after running. Internal pouch for over 16 years
A AndyHi
seanbo1001 Hey there. Long time runner and long time S-pouch. I get bleeding sometimes when I run in afternoon meaning with some food/stool inside me, especially nuts. I really have to watch out cause I'm on Xarelto for hx of DVTs. Do you get the bleeding when running on empty stomach like first thing in am? Sean [ more ]
AndyHi Thanks SteveG this is very reassuring to hear and does make total sense. 🙏 [ more ]
Sara Marie ❤️
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Lost Tolerance for Heat and Cold
C Catroy
AnonymousJ123 Hi, this is a long time ago I know but my body also does the same ever since my first surgery and that was 100% the cause. It’s got better over time but i can get too hot sometimes where I’m itchy and uncomfortable which is the worst. Much worse than the cold. After the 3rd surgery I also find myself getting colder than usual which makes me feel more drowsy and weak. Hope this helps [ more ]
Catroy Sarah, thank you for this information. I've not heard of dysautonomia, but will look into it and discuss with my doctor. [ more ]
Kushami Hello Catroy, I wonder if this could be a symptom of dysautonomia, a condition in which your autonomic nervous system – which takes care of non-voluntary body functions, such as heart rate, blood pressure and sweating/temperature control – is not functioning as well as it could be. There are many causes for it. Anyone can get symptoms of dysautonomia such as feeling faint on standing, exercise intolerance and difficulty with temperature regulation simply from being "under the weather". It is... [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
It burns…
JanWillemJanWillem
JanWillem Had my first meeting with my FT and learned what a kegel is . [ more ]
Scott F It sounds like you are on the right track. I hope you’ve been doing plenty of kegels, but if not then now would be a good time to start. The PT will likely offer more sophisticated exercises. [ more ]
JanWillem You guys are wonderful! many great stuff I can follow up on ❤️ @New577 I am still trying to find the right dosage and coming fresh from surgery my intestines are in overdrive. I’ll check Questran, sounds like something that makes sense. Thanks! @AMB , @Ryan138 a bidet sounds good, taking 20 showers a days as alternative considered @Scott F don’t have much control yet… going for fysio therapie tomorrow to train some mussels is never heart of before. Hope that helps. I’ll get some cream later... [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Top Doctors/Hospitals for J-Pouchers??
U UCfree2012
Unhappy Can anyone provide information in reference to a rectovaginal fistula. Is there a colorectal surgeon specialist that you recommend in the area of San Antonio Texas? [ more ]
elle I Have a great colon rectal doctor in Houston, Dr. Eric Haas, he came highly recommended to me and I am so glad that he accepted me as a patient. I have had my Jpouch since 2004. and started having blockage problems in the past few years. Recently I had 4 in a matter of 8 weeks, 0ne trip to emergency room. As soon as I would get myself unblocked,and started eating light meals I would gat blocked. The last blockage was major blockage and a good friend told me so many great things about the... [ more ]
pammieskrh Dr Remzi did my J-Pouch redo. April 2019 removed old J-pouch, fashioned new J-pouch and loop ileostomy. Plus repaired anal/vaginal fistula. November 2019 took down loop ileostomy. My new j-pouch is great. No problems with it. Dr.Remzi is the best! I flew in from Detroit for my pre-surgical testing on the same day. Got hotel room for that night. Had surgery following day. Was in hospital 5 days. On fifth day, flew home to Detroit. It's a little pricey and little inconvenient but well worth... [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Rice sitting in j-pouch not going anywhere …
K Kushami
Kushami Thank you everyone for your suggestions. I tried all of them, plus a few strategies of my own, and things are back on track. I’m being very careful to stick to medium fibre food, nothing gluggy or sticky. I will have my scope in 10 days followed fairly soon after by surgery. Not sure what that will be yet. Seeing two surgeons for opinions. I have another uncontrolled condition (autonomic dysfunction, a bit like POTS) that I have been trying to get sorted for two years. My preference is to go... [ more ]
SeattleJane It's great you have a scope scheduled, but that is still a ways out and it is NOT comfortable to go through what you are experiencing. I am guessing you may be on a liquid diet at this point and that gets old quickly. The most effective laxative I have encountered is not Miralax, it is drinking 16 oz of fresh celery juice from a natural foods or healthy-ish cafe with an industrial grade juicer. Whoa. It always works for me, usually too well. Just a note that home grade juicers don't remove... [ more ]
Sara Marie Also, massaging the abdominal & groin area can help move things around. Even very gentle massage can help move the intestines. Not sure if the clockwise (right to left) rule applies to us j-pouch people. [ more ]
See all 11 replies...
J-Pouch ForumsHelp! Need advice now!
Very new to all of this, need advice please…
R Robbiusd
SeattleJane Hi @Robbiusd , Oh golly, you have been through the mill. Yikes. I'm sorry. I know that "everything is good while on antibiotics" honeymoon and it is indeed heavenly, at least until the course of meds is over and day to day life comes roaring back. Yay for you figuring out how to MacGyver together a semi-workable combo of drugs and supplements to help your guts calm down in these first few months after take down. It's not easy. And it does get better. I am hopeful someone suggested to avoid... [ more ]
New577 So glad to hear this. I will say this again: If not for this forum, I would have been lost. The collective knowledge of this community is unparalleled and I believe that few doctors understand our condition better. [ more ]
Robbiusd Hi very kind of you to check in, thank you! Everything was pretty good for the 2 weeks I was on antibiotics however when they stopped it was back to square one and I still couldn’t get hold of anyone from the colorectal team for any advice and everything seemed dire. however, out of desperation, a bit of trial and error and no input from any medical professional I have found that taking some anti spasm tablets throughout the day along with a low dose of codeine and a few other supplements it... [ more ]
See all 12 replies...
J-Pouch ForumsHelp! Need advice now!
Question - Has anyone ever been misdiagnosed?
K kru5hit
SeattleJane This is a super helpful thread, thank you for the question and for all the replies. I recognize myself as a person "chasing after a diagnosis" in the hope it will help solve the problem, but as of late, I am slowly coming to understand it doesn't always matter WHAT is causing the problem - it just really matters if it is possible to a) live with it or b) find relief. Yeah, some stuff still needs to be diagnosed - small bowel obstructions immediately come to mind but they are easy to diagnose... [ more ]
Maverick Plus There is such a thing as Crohn's-like pouchitis. It looks like Crohn's but it is just another type of pouchitis. I had it, and my doc thought I might have Crohn's until he did further research. There are articles on various disorders of the pouch that might be helpful to you. [ more ]
Sara Marie ❤️
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Constipation
K KSid21
Jaypea Warm tap water enema or a Fleet enema to get the blockage past the sphincter. When I have been severely (and I mean really severely) constipated I have had to resort to manual disimpaction. Double glove but oh what a relief. [ more ]
Scott F This is a bit like a blockage but at the end of the pipe. I having trouble thinking of a reasonable model of how Augmentin might lead to anal spasms. Perhaps your stool got too hard and you strained excessively to empty? Did you produce any bricks? You might want to try a warm tap water enema, to help break things up and get some more information (e.g is there an anal fissure? that can cause spasm). Keep drinking plenty of clear fluids, and maybe back off food until things are flowing again. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Not able to empty pouch completely
MT Mary Tara
Mary Tara Thank you ever so much for the reply PouchLogic, your advice is very helpful indeed. I suspect my doctor will put me on a course of ciproflaxin as that tends to be the antibiotic of choice in most occasions but I’ll see what he says. best wishes Mary T [ more ]
PouchLogic I wouldn't be surprised to find out you have at least low grade pouchitis. Mine always starts out slow and I don't realize what is going on. Hopefully you can get a better answer from a Dr. Probiotics can make you feel extra gassy/uncomfortable if pouchitis is building. Good luck [ more ]
Kushami ❤️
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
3 weeks post takedown - not emptying
T TheoG33
Joe's wife Thank you! He went in this morning... Waiting for the hospital to call when he is back in his room... hoping everything goes ok. He developed an ileus both times before. Praying it does not happen again... [ more ]
lablover @Joes wife I am here for you! My husband has had his j-pouch for 28 years now. if you need moral support from a spouse that has been through it! :-) here I am. [ more ]
Joe's wife Thank you for the explanation 🙂 [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
Pouchitis and cuffitis
A AnonymousJ123
New577 I agree with Scott’s post above 100%. I have been on Canasa for over a year to keep my cuffitis from flaring. And I know from the pouchoscopy and calprotectin test that it is working as there is minimal to no inflammation. probiotics never really worked for me and antibiotics worked for my SIBO. I do not have any history of pouchitis symptoms, so I am no help in that area. [ more ]
Scott F If you want to thicken up your stool then psyllium powder might do the trick. A J-poucher usually does better with soft stools rather than formed stools, though no one likes watery stools. Cipro and Flagyl usually work pretty well on pouchitis, which commonly causes urgency and leakage/accidents. They may not do much for cuffitis, though, which could possibly be the source of your pain. Cuffitis is often treated with topical mesalamine (e.g. suppositories or enemas), which can take a few... [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Post surgery texture changes
Z Zomode
Sara Marie Before I got reconnected I didn't have any discharge out of my butt until shortly before that surgery was scheduled. I had a bunch of fluid come out and it was light-colored, and almost white. It also kind of burned. I also had sores in my mouth. I told my surgeon I thought I had a yeast infection throughout my alimentary canal and he, in his infinite wisdom, ignored me. Then when he went to do the surgery the fluid came rushing out and he freaked out and quarantined me at the end of some... [ more ]
New577 The mucous discharge after my colectomy was light brown/reddish during the ileostoemy period. just before takedown at 13 weeks it turned clear. surgeon told me not to worry about it. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Is there any hope for someone like me to not require a permanent ostomy?
Len78Len78
Scott F Like New577 I understand pouch advancement to reuse the current pouch. This isn't normally called a "redo" - that the name for building a brand new pouch. In pouch advancement the attachment of the existing pouch is re-made directly to the anal canal, instead of the rectal cuff. [ more ]
New577 I always thought pouch advanced preserved the pouch and cuts out the cuff, hand sews and mucosectomy. if the pouch needs to redone you will lose another 12-14 inches of ileum, which has its own implications. again, although it sounds like you are in good hands, is your surgeon well experienced in advancement and/or redo surgeries? I think you need to literally take this one day at a time, have the MRI this Friday, then based on results evaluate your options with the surgeons. you are about... [ more ]
Kushami ❤️
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Taking BP med Nifedipine 30mg ER with a J-Pouch
TechcatTechcat
Techcat Thanks Scott! I’ve had issues with hard coated potassium pills not being broken down before they were in the pouch. Changed to a different more chalky version and did fine, so I think you may have given me the solution. Anyone with a pouch meets doctors who aren’t as familiar with the pouch’s effects on the body. I did contact the doctor and ask for another version of the Nifedipine to try and picked it up yesterday. More pills to take each day but will likely work better. I think of myself... [ more ]
Scott F The issue isn’t that it would be likely to impact your J-pouch, but rather that it might not have been fully absorbed before reaching the toilet (and the amount of absorption could vary as your transit time varies). It will work better for some than others. I take a delayed release acid blocker and it seems to work just fine for me, but many J-pouches have a more rapid transit time. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Inflammation at pouch inlet
D DJJ2019
DJJ2019 @CTBarrister thanks for the input on the inlet and the backwash. I’m hoping it’s that and that nothing extends into the rest of the small intestine. The issue I have is that if the military docs do label it Crohns, they can push me to take biologics, which ends my career. So if it’s something that can be treated conservatively at first until I can retire in a few years, I’d want that. Hopefully it does not come to a head, but if it does, I can try to get a private doc to give an opinion. But... [ more ]
CTBarrister Why? It doesn't make a difference what label you slap on it, it's inflammation and needs to be treated regardless. And all the treatments are the same regardless of what label you choose, so it makes no meaningful difference. I also have inflammation at the J Pouch inlet, first seen at the 15 year mark of my pouch which is now 30 years old. Inflammation is common in this area because of backwash stool as you mentioned, and it tends to be more resistant to treatment. When I went on Remicade... [ more ]
Scott F If (when?) antibiotics stop working for me I’ll probably be on the biologics train. [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
After Genova Lab analysis, doc is recommending Xifaxan (Rifaximin) for SIBO. I'm nervous! Any advice?
S SeattleJane
SeattleJane @Scott F Boy, howdy, you hit the nail on the head with "The word diarrhea probably causes more confusion than communication for J-pouchers." I will be mindful when I talk with the naturopath. I have thought of trying to come up with easy to understand ways to describe diarrhea - maybe in a similar vein to the urban myth that the Inuit language has 50 words for snow. I will use phrases like "end stage colonoscopy prep diarrhea" or "ordinary food poisoning diarrhea" etc. To be accurate, one... [ more ]
Scott F The word “diarrhea” probably causes more confusion than communication for J-pouchers. I’d recommend separately talking about stool consistency (e.g. “watery”), frequency, and level of urgency. J-pouchers can sometimes have more watery stool, though it should probably get thickened up if it’s more than occasional, but urgency is never really normal with a J-pouch, unless you *really* waited too long to get to the toilet. Frequency varies a lot, but a healthy, well-functioning J-pouch usually... [ more ]
SeattleJane Thank you for your thorough reply, Scott, much appreciated. Good question on the C Diff, I tested negative. I have tried finding a doc at our sole major teaching hospital, University of Washington, Seattle, but they said it was "normal" to have diarrhea with a j-pouch. The three colo-rectal surgeons who performed the original and subsequent surgeries said diarrhea was not their thing and referred me to an infectious disease doc. The Infectious Disease doc prescribed a course of Flagyl - I... [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
re: JPouch removal following perforation
Z Zeninu4
Zeninu4 Hi Scott. Thanks for your response. I am just trying to find out what kind of recoveries people have experienced. Yes, I was on the rectal version prior but that did not have much positive effect. I also wondered if folks who had the JPouch removed if they closed everything up. I was told it is better to leave the muscles and not close the system. I appreciate your feedback. [ more ]
Scott F It's hard to predict an individual's pouch removal experience, since each pouch will differ in how much it is encrusted with scar tissue/adhesions, and how the particular surgeon handles the procedure. The procedure is sometimes (unpredictably) technically difficult, which translates to a somewhat higher complication rate than less complex surgeries. If I needed my pouch removed I'd go to great lengths to use a surgeon who has performed the removal procedure many times, to reduce the risk of... [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Pseudo obstruction
K Kushami
Kushami Going okay. Still slightly improved. Trying to coax small bowel back into action with some medium fibre foods. Good news is that I am drinking freely and not vomiting. If anyone wants to read about megapouch (it’s very rare), here is an article from the Cleveland Clinic: https://sci-hub.se/https://pub...lm.nih.gov/30327916/ (You may need to click on “Save” in the little rectangular box under the raven icon on the left to read as a PDF if not on a desktop.) [ more ]
Scott F I’m glad things seem to be improving. Gravity is important for pouch emptying, but you have to get more creative than “vertical” with a pouch that is partially malpositioned. [ more ]
Sara Marie ❤️
See all 19 replies...
J-Pouch ForumsHelp! Need advice now!
Can Feel Small Bowel Obstruction Forming but Big International Trips Coming Up
N NuAnoos
New577 Perhaps a scope procedure with an ileoscopy would be useful. because I had a redo of my takedown due to a fistula, my GI (during pouchoscopy) likes to snake the scope all the way up to the takedown to make sure all looks good. your time constraints may not allow for this, but it might give you peace of mind to get an all clear from an expert. [ more ]
NuAnoos Scott, I should have clarified, I was running daily 10 years ago, and ceased after my operation to clear that SBO. I have recently resumed exercising with vigor and this time I have chosen rowing on a machine, as Cipro ruined my knees a few years ago and prevents me from running. I have been rowing pretty consistently for 3 to 6 months and that was the same window I had been running daily. I am also wondering if the movement exacerbates the development of scar tissue in my abdomen. [ more ]
NuAnoos I wonder if this is a pre-existing condition. I haven't had any medical treatment or recognition of what I think may be occurring here. But then again, I am pre-disposed to a greater risk of SBO, so perhaps the insurance will treat it that way. I will be in South Korea in April, followed by Aruba, and then in June, Italy, Greece, Montenegro and Croatia for several weeks. I'm truly hoping not to end up in any hospitals abroad, or even back home for that matter. But, I do feel like food isn't... [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Thinning stool?
FM Former Member
AMB https://healthonline.washingto..._Guidelines_9_09.pdf I like this guide. Still refer to it over 18 months out. [ more ]
Scott F Assuming adequate water consumption (this is critical!), I'd try psyllium first and see whether it was helpful. If psyllium doesn't do the trick then Miralax in small doses can work. [ more ]
Cb2009 I tend to get thicker stool that makes it difficult to empty. I find taking magnesium daily thins it and if I need more I will drink coke, that usually helps too! I have heard fruit juices can do the same especially grape or apple, but I have not tried this myself. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Dealing with stress and excess BM, any tips?
ValenValen
Mrs P ❤️
New577 My solution for cramping is levsin, which does a good job of stopping everything for a while. though I take Imodium 3x/daily, I see it’s value as slowing things down long enough to have less caustic/acidic BMs . when I experience IPS ( I am former IBS sufferer), one levsin under the tongue works in about 5-10 minutes and I get relief. BTW, I average 6 BMs per day, so my feeling is 6-8 is not excessive, but 3-4 per day is impressive to me. [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
DC area to buy marijuana
MN marc nolan
CTBarrister PSJ, There is no need for a medical card in MA. Marijuana is legal for recreational purposes. There is a great store in Holyoke, Mass called Canna Provisions. They have a sister store in Lee, Mass. Both stores are excellent. https://cannaprovisions.com/locations/holyoke-ma/? There is also an online order distillery called CBDistillery which another member here recommended to me. I just placed my first order for sleep gummies with them and it should arrive by UPS today or tomorrow. No need to... [ more ]
PSJ I just got my medical card here in MA. I started back in 2008 when I ran out of options. i took every horrible pill they gave me, especially the steriods were the worst (and best unfortunately). When I decided to try it it was only researched in AU and UK with promising results. When I was younger I did it a lot but once older quit for 10-15 years until this happened. For those who think it is crap I can tell you without any doubt in my mind whatsover IT WORKS and works WELL at least for me. [ more ]
marc nolan Thank you for your responses. Dispensaries cannot sell to out of state folk. I have a little research done on various gummies, I am def hoping for some help with the stores I have been looking at. I currently take CBD and Delta 8, but I think I need a higher level of Indica. [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Reducing Elevated calprotectin??
V van
van I'd say pouchitis, As I had it late last year as well. These current results were found on a routine test. I don't have any symptoms yet so that's why his going to wait for my next appointment and re test in a month. [ more ]
New577 Hi Van, If your reason for high cal protectin is pouchititis, you might need antibiotics to fight it. Others will weigh in on this in my case, my high cal protectin is caused by cuffitis, and that inflammation is managed by canasa suppositories. My cal protectin numbers have been steadily dropping in the year since I have been on this medicine. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
bad cuffitis! my doc has given up! Please help!!!!!
J jd9998
Barbara Anne Last month I had razor blade pain that I think was from anal fissure & hemorrhoids. I don’t know, maybe cuffitis? It’s been an ongoing problem for years. When it’s bad I do hot sitz baths & then I started using Calmoseptine ointment after every bowel movement and it has worked wonders! I also have a bidet. I tried many other things & I can’t believe how much the Calmoseptine helped. Bought it off Amazon. [ more ]
SteveG @rcrossco_1 make sure it really is cuffitis and not an anal fissure. I misinterpreted my anal fissure for several weeks to be inflammation. If you do an enema with water only and the sharp pain vanishes, then it's likely to be a fissure where some particle got stuck and flushed away by the water. Using a bidet / shower after a BM can also help with that. If it is cuffitis, you could also do a budesonide enema or apply cortisone foam. [ more ]
jd9998 ❤️
See all 14 replies...
J-Pouch ForumsHelp! Need advice now!
Too many nuts
chili123chili123
Claudia S My surgeon shared caution with popcorn also. He had a former patient come in to ER after attending a ballgame and consumed a bucket of popcorn. [ more ]
Winterberry Chili, try to resume your regular meals as soon as you safely can. Don’t be afraid to eat, and make sure you get your proper nutrition. I stopped eating properly for three months after I had twisted guts and emergency open surgery. I was afraid to eat anything tougher than macaroni and cheese with a morsel of chicken, and jello. I gave up all vegetables, meat, eggs, protein. At the three month mark, my hair started to fall out. I was under such stress with family matters and trying to avoid... [ more ]
chili123 Thank you everyone. I do believe it was the nuts that wouldn't pass. Cat Scan showed no blockage although ER doc thought it may be early. Ended up having 2 thick bowel movements and then 2 not so thick within 30 minutes so I was sure it passed. I came home Friday afternoon and have stayed on all liquid diet because I am nervous to eat but also still feel sensation in the tummy....I think just my intestine is still swollen from the inflammation is what I am thinking. Today is Day 4 of all... [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
closed-loop obstruction.
K KS
SteveG It's always good to have a second opinion with such problems. I hope your 2nd scan will reveal more details. Some more questions: Have you yet tried antibiotics as suggested in some of your recent posts? They can help a lot with bacterial overgrowth and bloatings / aching. Do your blood labs (CRP) show signs of inflammation? Did your recent pouch scopes also cover the last part of the small intestine? My exams always reached 40...60 cm inside. And for some reason the small intestine was... [ more ]
KS This is what my Gastro sent me. I am so pissed he is soo casual about it. 1. it took him 2+ years of my constant nagging of pain and bloating to finally get CT scan. 2. and then he forgets to add rectal contrast, which means I need to get the same scan again! I feel we are just a number to these doctors, and not real human. Working on getting a new gastro if possible! ----------------------------------------- I looked the CT over with a 2nd radiologist. I don't believe that this is a closed... [ more ]
SteveG Sounds like the stricture is way above the pouch, but I can't tell if it is around the old stoma site (as they call it "anastomotic"). Anyway you should ask you GI doc or the doctor who did the CT scan what kind of measures he / she would advise. A closed loop would mean a distended piece of small intestine between two narrowings that are close to each other. The report mentions only one stricture. And it would be interesting to know the residual diameter of the stricture, as it could cause... [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Pain with prolapsed and floppy pouch
S SamG87
LV2Hike Although this post is over 2 years ago, I'm wondering if you ever got the biofeedback, bc I too have paradoxical contractions and a floppy pouch, causing incomplete emptying and leakage, diagnosed by Dr. Bo Shen. I couldn't go through with the first biofeedback visit bc they couldn't get the probe through my anus, it was such excruciating pain. So I told Shen that I am going to dilate myself slowly with a set of Hegar Dilators until I can get 18 mm up me without pain. I'm barely up to 16mm... [ more ]
SamG87 Thanks Scott, I really appreciated it. I’m also assuming there’s a second issue going on but I didn’t have an inkling on what it might be. I’ve had fissures before and it does make sense that this could be one, albeit in a bad spot. Luckily I’m talking to Dr. Shen on Thursday (and even more luckily I live in NYC) so I’ll ask if he thinks that could be it. [ more ]
Scott F Sam, I wonder if you’ve developed a second problem. You might have developed an anal fissure *because* of the excessive sphincter contraction. If that’s the case you’ll probably have to get the fissure healed before you’ll be able to tolerate the biofeedback. If I were in your shoes (and confirmed a fissure) I’d consider Botox injections (in addition to the other measures to comfort a fissure, like sitz baths). They are normally not the first choice for anal fissures, and sometimes it’s hard... [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Gall bladder removal/sternum pain/ pouchitis
Q qdm
qdm Karrine, do you also feel the only way to manage the pain and diarrhea is to be on cipro. I can’t figure it out. It seems the cipro definitely does something in my system that helps. But, I don’t want to stay on it forever. I get really an intense pain and burning in my stomach in the night also. Have you experienced this? [ more ]
Karrine I am going through the same issues. I had my reversal 24 years ago. 6 years ago I had my gall bladder removed and have been on acidic blockers but they don’t work anymore. It is like having an ongoing gall bladder attack - every night for three months. I have a couple of other medical issues that I need to work through but figuring out how to overcome these new challenges the gall bladder removal have caused is high on my list. [ more ]
Scott F Yes, that’s a lot of acid blocking. If you’re having breakthrough pain (which is what it sounds like to me), then it could be a few things. You might need to try a different acid blocker (i.e. they aren’t working any more), you might have gastritis or esophagitis or an ulcer, or one or two other things. I was in a similar situation earlier this year and I chose to have an upper GI endoscopy, mainly to ensure that my years of reflux hadn’t caused a Barrett’s esophagus, which presents a cancer... [ more ]
See all 6 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 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 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 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 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 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 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 ForumsHelp! Need advice now!
Severe gas and bloating--tummy ache
K KS
KS Thanks Steve. Let me check. Does colon cleanse/bowel cleanse thing work for us since we dont have colon? [ more ]
SteveG I thought of meal replacements like Ensure or Boost. Here in Germany I always used to have Fresubin Energy Drink (the high caloric version, the high protein drink was not the right thing for me). Such drinks did not help me to gain weight when I had them additionally to food. But when I stayed off solid food for some days I could at least keep my weight that way. I drink that kind of stuff very slowly, about 15 min. for a small bottle. About 5 or 6 bottles a day when I don't eat. Doing so I... [ more ]
KS ❤️
See all 13 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

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.
×