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J-Pouch ForumsGeneral Discussion
No urge to have a BM
ValenValen
Chook2 If I do watery stools it usually means there is a blockage and only the watery part is getting through I would try peppermint tea,coffee to try getting a bigger clearout. [ more ]
AMB From reading through many posts here, the medical literature and my own experience, one thing to keep in the back of your mind is that mucosal prolapse can occur at any point, and it can make evacuation difficult. Tall thin people with less abdominal wall fat are more prone to it. It's also referred to as "floppy pouch" in some literature. This is not something caused by straining, but it will actually make evacuation harder if you have mucosal prolapse. Basically straining pushes mucosal... [ more ]
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J-Pouch ForumsGeneral Discussion
Do you use CBD to slow down your digestive system?
BarbieGBarbieG
BK 123 I too use medically prescribed cannabis. I'm definitely a lightweight and it's a fine line for me when I smoke - it makes me very lazy. So what I've been doing recently is taking half a gummy that contains mostly CBD and a little bit of THC. I do find that my bowels seem to slow down a bit, but it could just be the fact that my mind isn't constantly thinking of having to go. Either way, I'm not complaining. Medical marijuana has great benefits and as people with IBD we are granted the right... [ more ]
BarbieG ytcrockpot, that’s for sharing your experience. I did notice less urine output while taking them and have to continuously drink water, which I normally do but don’t have the same thirst while taking it too. Weird. Appreciate the heads up! Thanks! [ more ]
BarbieG PouchLogic, thanks for sharing your experience. I find normally having 8+ loose bms a day down to 4? a great improvement. I’ll try your docs suggestions until I see mine next month. Thanks! [ more ]
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J-Pouch ForumsGeneral Discussion
Loperamide or alternatives to help sleep through the night
A Adam
Bubba1028 I take loperamide with dinner and then at 11pm before bed. But I also take Colestipol, one with dinner and one before bed. My doc says it works completely different than loperamide but it slows things down. Works great. I can sleep from 11pm-5/6am. Ask your doc about this medicine. Here’s more info [ more ]
BarbieG Pepto works for me. Twice a day extra strength. Eat something like thick potato soup, a bagel or rice at night. Red meat takes a really long time to digest, so steak & potato dinner is best for me. [ more ]
AMB Pepto Bismol is worth a try - Doctor Shen recommended it. Have been taking Loperamide around 8 pm to settle my "every evening gut excitement" then Pepto 3- 4 hrs later. I've had a few good 6hr nights. (4 hrs at a time is my base line though some nights even that is interrupted. ) Take a look at other comments here by searching Pepto Bismol. Beware the black stool and tongue. Diet seems to be all-powerful. I've shifted to a small meal, never late, oatmeal is best. I've tried Scott's Peanut... [ more ]
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J-Pouch ForumsPouchitis
Natural remedies
E Ellie
BarbieG Interested with anybody's experience with CBD & THC, no smoking, to slow down the digestive system. How much & how often do you use. Interactions with other drugs? [ more ]
Scott F “spirulina is a cyanobacteria . Cyanobacteria have traditionally been classified as algae, referenced as cyanophytes or blue-green algae, but today some treatises exclude them from algae.” The spirulina supplement that’s sold isn’t viable organisms, just “biomass” from dead organisms, so it’s not a probiotic that could compete with gut microorganisms. Nevertheless, spirulina has been studied in IBD and showed some benefit in a mouse model of UC. [ more ]
Creampuff Hi all, I’ve been suffering from bloating and diarrhea as well as all the lovely sounds that go along with those problems since my last revision in 2018. I live in Germany and they’re extremely conservative about prescribing antibiotics which means they won’t give me more than a two week supply which I personally think causes more problems than it helps. All this to say, I wasn’t getting much relief then on a whim I bought some powdered spirulina and began making a smoothie with one heaping... [ more ]
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J-Pouch ForumsGeneral Discussion
Complaining here for a min- gas
B Bubba1028
Bubba1028 Oh yea, I do take one. I did some research and take one with 10 million + strains blah blah. I can’t afford the vasl since it’s not covered by insurance. But this one works for me. I take it with dinner. [ more ]
SteveG Good to hear you are better now. Perhaps you have to adjust the dosage of Flagyl from time to time to find the best compromise. Do you take probiotics, too? I have an inexpensive one in the morning, not because I would see much difference in pouchitis activity, but to add some harmless bacteria and keep the noxious ones from spreading too much. At least that's the idea. [ more ]
Bubba1028 Actually I increased my flagyl the past two days and wow what a difference! I rally think that was it. I can’t be on cipro bc I sometimes have to go on prednisone and cipro in combination with pred can cause an drastic increase for possible muscle rips or some random side effect like that. So flagyl just works better for me. But thanks for the suggestions everyone! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Ergocalciferol side effexfs
MT Mary Tara
Mary Tara Thank you very much for your reply. I am urinating, although it’s hard to determine the quality since it’s often mixed with (small amounts) of stool. But I’m pretty sure it’s clear and light coloured as it should be. I drink plenty of fluids throughout the day. It may be a coincidence that this is happening after the ergocalciferol jab. I’m really not sure. I made an emergency appointment with a gastro and had bloods taken for a follow-up soon. thanks again [ more ]
Scott F Although ergocalciferol can sometimes damage the kidneys, your reduced pouch output suggests that something else is going on. Are you drinking enough fluid? Is your urine light-colored (as it should be)? [ more ]
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J-Pouch ForumsHelp! Need advice now!
High grade dysplasia rectal cuff recommendations
S Scott21
AMB I think you've got time to find the best surgeon. I went 3 months from high grade dysplasia diagnosis to surgery. After 40 yrs of colitis it wasn't a shock, but I felt the only thing I actually had control over was finding the right surgeon. I scheduled three consultations before deciding which surgeon to use. I got in to see Dr. Kiran at Columbia - virtually - very quickly after having waited two months plus to see Dr Remzi, and deciding his open abdominal surgery approach was not for me. [ more ]
Scott21 I have an appointment with Dr. Remzi but not til April 4th my gi doctor thought that may be too far out and something needs to be done sooner. Have an appointment with doctor Rolando Rolandelli mid March. I thoguht Remzi did Kpouch? [ more ]
AMB Dr Kiran at Columbia also for a second opinion. He and Dr Remzi of the same caliber reputation but Remzi does not do the K-Pouch. Kiran performs them regularly. I scheduled consults with both of them (and a third surgeon) before proceeding with my surgery last year. Now with virtual appointments it is very easy to get multiple opinions and an approach that you are comfortable with. good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
doc near charlottesville, VA who's aware of iron deficiency w/j-pouch?
B buzzatsea
buzzatsea Thanks to both of you for your help. I've been too tired to give a thorough response, but you each made great points that have helped me a lot. [ more ]
New577 Hello, I have some thoughts on your situation. I have been anemic with low hemoglobin since emergency surgery and I had 3 transfusions. this past November my levels dropped again and I received 2 iron infusions. my latest labs show my iron levels to be at the very low end of normal and hemoglobin to be just below normal. my guess is that your doc(s) are reluctant to put in for iron infusions without a clear diagnosis of anemia as the insurance company might deny coverage. I have started... [ more ]
NMGuy I am Not a doc, sorry to waste your time. Probably a stupid question; you have a CBC and a 25-hydroxyvitamin D blood test in those results? Since you probably have this, another stupid question, a residual Lyme disease test? [ more ]
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J-Pouch ForumsGeneral Discussion
Bleeding
GEB56GEB56
Scott F Have you considered combination antibiotics or a biologic? They won’t help the blind loop, but your frequency likely has more to do with the inflammation than the anatomy. [ more ]
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J-Pouch ForumsGeneral Discussion
Due for My Simponi Injection
C capper
SteveG Capper, I had a look at your December post and there seems to be little change since then. I know that chronic pouchitis can be very exhausting. You are taking Simponi for almost 5 months now? If there is no improvement by now chances are small it will help you. Does your doctor want to end the therapy after 6 months or so? I would try an antibiotic or a combination of antibiotics like Flagyl and Cipro for chronic pouchitis. If it helps, you will be better within 2 or 3 days. If it doesn't... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Please help: Difficulty Evacuating Pouch
L LizAdair
Former Member Great news! Actually, your symptoms are similar to how my pouch behaves during the first days of my period, when I get strong contractions and hormone changes. [ more ]
CTBarrister I am glad to hear there is nothing wrong with the pouch that requires the usual treatments. Hopefully your theory of pregnancy related Pouch complications is correct, because if so it will be a very temporary issue and you will be able to move past it. [ more ]
Scott F I'm glad there doesn't seem to be anything awful going on. If you've been straining to try to pass gas that might explain the painful enema insertion. Folks have described a bunch of positions, contortions, and maneuvers to facilitate passing gas (on and off the toilet). My favorite name for this is bathroom yoga, coined by one of our wittier members. You might try searching for some of those posts and seeing if any of that helps. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Stricture
S Sherry24
Sherry24 Thanks so much for your detailed reply 😊😊😊 [ more ]
Scott F Dilations can sometimes be painful, and most folks seem to prefer sedation for them. A finger is no more or less painful than any other dilating tool, but it only has one diameter. Multiple dilations may be necessary. Once a stricture is opened up people sometimes maintain the opening with self-dilation at home, in consultation with their doctor, to avoid having to repeat the experience. [ more ]
Sherry24 Sounds painful [ more ]
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J-Pouch ForumsHelp! Need advice now!
Can Crohn's Come Back After Ileostomy?
K Kimmiebee84
Kimmiebee84 Thanks everyone. I saw my gasto’s PA, and they are going to do a scope next Wednesday. That will hopefully tell me if the ulcers are inside as well. [ more ]
Scott F Kimmie, the ER can help in an urgent situation if you are bleeding heavily. To work out the cause and treatment of your ulcers you’ll need a good gastroenterologist. Yes, as others have written, Crohn’s can recur whenever and wherever. [ more ]
CTBarrister This really isn't correct because Ulcerative Colitis technically only effects colonic tissue. J Pouch surgery removes all colonic tissue except the rectal cuff, inflammation of which is called cuffitis. Furthermore there is an emerging scientific belief based on actual recent studies that the old labels of "Crohn's" and "Ulcerative Colitis" are simply not applicable to inflammatory bowel disease that develops in pouches and post-ileostomy. Instead, it is believed that it is a new, as yet... [ more ]
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J-Pouch ForumsGeneral Discussion
First Post- Need Some Help (Insurance)
S Salim
CTBarrister It's actually very simple. Janssen/ RemiStart will send you a card that looks like a credit card. You turn it over to your doctor's office's billing department immediately after you get it. That credit card is then used to bill Remistart as essentially a secondary insurer. I think it's Janssen that administers the program now, so make sure you open and read everything they send you. They only ever sent me that credit card once and I have been on Remicade for 6 plus years now. Legally, those... [ more ]
Scott F Congratulations! If your employer will be providing health insurance you will often have few choices to make. If you will purchasing your own insurance (I’m presuming an Affordable Care Act policy through your state’s exchange, starting at Healthcare.gov) you may have a bunch of choices. If your income will be modest (or at least not massive) you will likely be eligible for subsidies - the most generous subsidies and cost sharing are on the “Silver” level plans. Under the ACA the crappiest... [ more ]
PouchLogic No problem, sorry I don't have any info for you. I'm pretty lucky that I live in Canada and my wife managed to get me on her insurance work plan. Good luck, I hope someone can help with your decision. [ more ]
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J-Pouch ForumsPouchitis
Vaccines
S Sand
CTBarrister Just had my Covid booster shot yesterday (Pfizer, shot #4). I have not observed anything unusual after any of my shots except a sore arm. [ more ]
Ian65 I also wonder if three covid-vaccination during the last 6 monthes has caused my pouchitis to be quite difficult to treat? It appears the vaccine cause disruption of gut microbiota, according to resent Chinese studies. Could it explain why tradtional rotating antibiotica no longer has the same effect? I have found no recent studies about this but studies take time to publish and this happens now! [ more ]
Scott Sheridan ❤️
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J-Pouch ForumsGeneral Discussion
Reverse the Procedure
SS Scott Sheridan
Scott Sheridan ❤️
sunshine45 I was on Remicide for 5 years prior to my pouch procedure. It was wonderful for the first 3-4 years and then I formed an immunity to it. Also I have primary sclerosing cholangitis and than we also a reason for the surgery and pouch. Good luck [ more ]
ValerieK Hi Scott, You and I are in the same boat . 1 step surgery pouch 24 yrs ago. Chronic dependent refractory pouchitis. Daily on Cipro/Flagl for 21 yrs. I go every hour except when I sleep I can wait 4 hours. I had a traumatizing ONE step surgery, so I have never had an extenal bag and have fear about the recovery and functionality (and was vain until recently hitting menopause). Decided to try Remicade after developing horrible side effects with Flagyl. I'm on Prednisone for the second time in... [ more ]
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J-Pouch ForumsOstomy & Skin
White sores on stoma
K Kimmiebee84
PouchLogic You probably should not be taking asprin. [ more ]
Kimmiebee84 Could aspirin cause these? I have been taking it for headaches lately, because (let's be honest) Tylenol is like taking skittles. I get chronic headaches, and I am finding that my migraine medicine is causing more of them. If you somebody could reply regarding this I would really appreciate it! [ more ]
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J-Pouch ForumsK-Pouch Korner
Pouch leaks might be from SSRI anti-depressants and other drugs
S sldrx
SeattleJane Hi @Shavon thanks for the advice. i will definitely talk with my doc, I have an appointment tomorrow. Now that I am 3 days past my short but disastrous 7 day trial with 12.5 mg of Zoloft, I no longer have the terrible stomach aches, and I am not in any pain anywhere else, so I can't justify a pain diagnosis as a reason for ketamine. Depression? Hell yes, but my insurance company may not agree. I will give it my best go. It will probably mean trying Lexapro first....time will tell. I will you... [ more ]
Shavon I advise you to check with your doctor and maybe even a pain specialist about getting ketamine covered by your insurance. My doctor had to submit it in a specific way to get it covered - but it worked. He was only able to get the infusions covered because the nasal spray was still very new. I did not have any side effects at all. I was not on any other medication. I may look into a nutritionist however I know what to eat. It’s just that I no longer have an appetite. My therapist thinks it... [ more ]
SeattleJane Hi @Shavon , thank you so much for taking the time to add your information and experience. Ketamine is new to me so I did a little research on the internet. It sounds promising, fingers crossed. I understand insurance might not cover it, and it's pricey so I will bring it up with my doc and take it step by step. May I ask three questions about ketamine? No worries if you do not have time to respond, but if or when you have time - here they are: 1) did you have any G/I side effects? 2) did... [ more ]
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J-Pouch ForumsGeneral Discussion
COVID-19 Vaccine for j-Pouchers (I am in US)
rlbliferlblife
RHolt Hi all, I agree with the folks who are saying the side effects/risks from the vaccines are not worse (by a long shot) compared to the risks from COVID. I would also like to say that having an autoimmune disorder is not the same as being immune-compromised. We don't have weak immune systems. Instead, we have CONFUSED immune systems! My personal opinion (and I am a long-ago nurse, not a doctor or virologist) is that our baseline autoimmunity sets us up for long COVID if we were to get the... [ more ]
Chook2 I had my booster shot two days ago and I think you need to plan to have at least the next day off as I had numbing head ache that became stabbing head ache ,felt terrible and at one stage had tightness in my chest.terrible experience but probably still glad I've done it after seeing Disney +First Wave.This is a terrible illness.I felt normal within 48hours but not too keen on another booster. [ more ]
Scott F It’s easy to mislead yourself when assessing risks, amplifying tiny risks and giving too little weight to large ones. As SteveG wrote, the risks from a Covid-19 infection - including giving the infection to others - are vastly greater than the risks of vaccination. I’ve lost three friends to this so far, most recently a few weeks ago. Any concerns about our immune systems, however speculative, also apply more to the disease than the vaccine. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Tips for Preventing Ileus Following C-Section
S swojnowiak
Mdh I'm so sorry that you developed such a severe obstruction and new diagnosis. I hope you continue to feel better! I wanted to echo your experience and plan for the 2nd pregnancy in case anyone else was dealing with this. I developed a blockage with my first and it was so scary and painful. And quite honestly the ob department did a great job of taking care of baby, but had no real idea about taking care of me and delayed calling in a gi consult. For my second pregnancy, I decided to be as... [ more ]
swojnowiak Hi all! It’s been a while since I’ve been on here! A lot has happened since I last posted. My second C section delivery went well (healthy, beautiful son!), but I did end up having issues with my BP again post-delivery and dealt with gestational diabetes and hypertension during pregnancy. I did not end up developing an ileus! I went with just taking IV toradol post-surgery along with around-the-clock Tylenol and was able to avoid opioids. I made sure to get up as soon as I could to walk... [ more ]
ksr How are you doing? I just saw your post. When I had my daughter 10 years ago I got an ileus. It almost killed me. [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch issues
J JpouchBoston
rcrossco_1 Be careful with how you take antibiotics. (for Pouchitis) Many people have experienced the same as me, and their effect is on a curve, whereby they are very very effective for the first few days, and progressively get less effective over time, until the point a lot of people were back where they started with all the pain, inflammation, etc, even while taking the pills, so the worst of both worlds. I am not the only person to experience this, and a lot of folks have managed their antibiotic... [ more ]
Scott F Cuffitis is commonly treated with mesalamine by suppository or enema. It takes a while to work, but you could ask your GI if Canasa suppositories might help. Rectal steroids can help a bit more quickly, and might tide you over until the mesalamine starts working. Options include Uceris rectal or Cortifoam. In the meantime, are you using any bowel slowers or fiber? [ more ]
New577 Hello Boston, Your experience is very similar to mine. I was treated in sept 2021 with two rounds of cipro which helped. October 2021 pouchoscopy showed no pouchitis and very mild cuffitis which was treated with canasa and anucort suppositories. in December I was diagnosed with SIBO which can also cause lots of discomfort and frequency. I just met with my GI doctor this morning who wants me to try less loperamide that is working great for me. If symptoms return we will treat the SIBO with... [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch surgery recovery
J Jenncp
Scott F It’s common advice to delay bathroom trips to gradually increase pouch capacity. This is quite helpful for folks who want to aim for 4–6 poops per day. It should be done gently but persistently. Just about any barrier cream will work, applied *after* every bathroom trip (so it’s in place when needed). Plain old zinc oxide is fine and inexpensive. Some people swear by Calmoseptine, but I found the menthol too strong. [ more ]
SeattleJane YIKES> I need to edit the above comment to say "I would suggest NOT eating anything that causes burn or gas!" [ more ]
SeattleJane Oh, wow. Ouch. I'm sorry. That sounds very post-op painful and bewildering. Your surgeon suggested that you "...resist going to the bathroom all the time to train the j-pouch""? Um, er, uh, does he/she think you go to the bathroom just for the sport of it? Sheesh. I am NOT a doctor or surgeon, but if my body wants to pass stool, I want it out, otherwise I get a stomach ache and become nauseous. I don't remember having post op stomach pain, so I am afraid I can't help you there, darn it. I... [ more ]
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J-Pouch ForumsGeneral Discussion
app for tracking foods and symptoms
S scallop
SeattleJane I will ask my son-in-law if he know of any classes where students need to invent an app as part of their educational requirements. If he knows of something, I will let you know! Unfortunately, I don't know beans about the coding required to invent that kind of app or I would go for it. A spreadsheet sounds like a good idea - you can customize it to your needs. [ more ]
scallop Thanks. Currently using a spreadsheet. I found some gi apps but they do didn’t have enough slots for multiple poops/day ( lol). We should invent one. [ more ]
SeattleJane I use the app "Lose It". It was designed as a weight loss app, but I use it to gain, lose or maintain weight as needed. It is a food, water, exercise and weight tracker. I record food, beverages, water daily, exercise amount and type, record my weight. There is a place to make notes where you can enter your G.I. info. Maybe we should invent an app for people with j-pouches.... [ more ]
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J-Pouch ForumsGeneral Discussion
Psyllium, tips
E Enterin
Still Standing Another psyllium tip is to mix it in applesauce and eat right away. [ more ]
Chook2 I wonder what a Surgeon or Gastroenterologist recommends their children take to help study or before a sport they play.I think sodium,psyllium husk and electrolytes maybe but I'm not sure.do they recommend whey protein or creatine?I'm finding being in the sun helps alot as well,I am thinking of taking vitamin d and zinc supplements. [ more ]
JHendrix I am a firm believer in psyllium. I probably take more than most do. A heaping tablespoon in a bit - just less than 1/4 of a cup maybe - of warm water four times per day. The warm water does make it thicken quickly but I've not had any difficulties with choking (the famous last words ha ha). When I was in Cuba (back in another lifetime when I travelled) I bought the pre filled geletin capsules thinking it would be easier. I spent the whole holiday with very loose stool and as a result ( as... [ more ]
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J-Pouch ForumsGeneral Discussion
CT Scan Results
D DJJ2019
JHendrix Thank you for posting an update to your situation. I often find it a bit frustrating when I do a search, find exactly the same issue and the thread drops. Glad to hear it has worked out for you. When you say your take down site do you mean where the ileostomy was? If so, that exact spot bothers me at times. I massage it, thinking that maybe 'stuff' is just getting a bit slowed down going behind the site. I have no idea if that's the case but, for the most part I've quite worrying about it. [ more ]
Pouchomarx WOULDNT the CT show a hernia? [ more ]
DJJ2019 An update for future use and searches. The pouchoscopy went well. They gave me fentanyl and some benzo in my IV and I had no pain, it was kind of peaceful. The mass on the CT scan was really just some irritated area in the pouch where the sutures had been I guess. All in all things went well. Lesson learned here is to not worry right away until all info is back. My takedown site still bothers me some, but the scope did not show anything (granted it could not get all the way up there). I... [ more ]
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J-Pouch ForumsK-Pouch Korner
need advice on bcir
Z zackk
Kimmiebee84 The BCIR works really great for some people. Others like me, it does not. I had an ileostomy transferred to a j-pouch. My pouch failed in 2010, and in 2011 I went to a permanent ileostomy. It worked great for awhile, but I started having a lot of leakage issues, so I gave the BCIR a go. It was a HUGE surgery. You’re literally cut vertically and horizontally. You have to stay in the hospital for 3 weeks after surgery, and that was really hard for me. Afterwards my body rejected the BCIR. I... [ more ]
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J-Pouch ForumsGeneral Discussion
Bananas/Apples and gas?
Isaiah JonesIsaiah Jones
Scott F I tend to peel apples and share an apple with someone else in my house. I eat just about everything, and I don’t really know if apples cause a problem, but I have caution left over from pre-colectomy days 20+ years ago. [ more ]
Kmiller Bananas I'm fine, but ate an apple a didn't really agree with me. I haven't tried again in awhile. [ more ]
Kushami I would try cutting out those two items for a week or so and making a note each day of what happens. I guess you need to make sure not to inadvertently replace them with other items that are high in sorbitol. If it seems to help in the gas front, you could consult with your doctor/dietitian and try eliminating and then reintroducing FODMAPs (of which sorbitol is one). [ more ]
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J-Pouch ForumsOstomy & Skin
Loop ileostomy
K Kushami
New577 Hi, I never understood how this could be physically possible. When I had my loop my surgeon stapled shut the bottom limb leading to the jpouch and anus. Although I had mucous discharge for the 13 weeks of the osteomy, there was no stool. [ more ]
Kushami Thank you. I just couldn’t seem to find an answer by searching on this one. [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
Jpouch capacity increases over time but by how much?
S Shainy
Shainy Hi. I am happy with my J Pouch. I take one immodium before bedtime every day. I would say that the function of my pouch highly depends on what I do. The keys for me are not overeating and avoiding butt burn by using wipes and finding the right balance of time for sitting on the toilet to empty everything but not staying on too long so that the output starts to burn the skin I stress the key is not overeating. I can pretty much eat what I want but if I eat too much it means more emptying... [ more ]
Chook2 Hello,I don't want to be annoying but I was wondering if your jpouch continued to improve each year or if it hasn't changed much since the 1,2,3 year marks .has it become more colon like,do you still take any meds?are you happy with it? [ more ]
CTBarrister Ditto on Scott's post above. My surgery was in 1992 with Dr. Irwin Gelernt who was one of the pioneers of the J Pouch and studied under Dr. Nils Kock. He at that time was considered the best J Pouch surgeon in the USA. He gave me a pamphlet of post surgical instructions and heavily emphasized holding stools in as long as possible in the 6 months after getting the J Pouch. He told me it would expand the pouch because the very point of a J Pouch is what? Stool storage! So holding it in assists... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Hysterectomy and J-Pouch Functioning
JoanneJoanne
Joanne Hi Karen, Oh my goodness, I can't imagine what you have been through for so long. Since my jpouch surgery I have had probably over a dozen small bowel obstructions. I've learned that I am full of scar tissue from the surgical error at the Cleveland Clinic in 2001. That surgery was to try to save a newly constructed pouch that was abscessed. Unfortunately, I was hell bent on having a jpouch and not an ileostomy so I went to the CCF for a pouch redo. The surgeon did not have the wisdom to talk... [ more ]
ksr Joanne, Here is a list of my surgeries: January 2002 had an intussusception in the small intestine, jpouch in May 2002, emergency surgery due to intestinal obstruction in November 2002 (small intestine was found wrapped around the stomach), benign tumor and left adrenal gland removed in September 2003, c-section 2011, gallbladder 2013, emergency intestinal surgery 2015 (small intestine found surrounded in a ball of scar tissue. 4 liters of fluid pumped out even with an IG tube!), uterine... [ more ]
Eva ❤️
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J-Pouch ForumsGeneral Discussion
jpouch hernia / mesh repair?
J JoeJoe
Jan Dollar This is a pretty simple surgery that any general surgeon can do. They do not go into the abdominal cavity and mess with your intestines, other than to free up the organs from adhesions that may have formed to the area around the hernia. They may do a cursory “look around” to make sure all is well, but nothing like what was done for your j-pouch or ileostomy. The mesh is used to add strength to the abdominal wall fascia, so that the hernia does not recur. This surgery can be done on an... [ more ]
Pouchomarx I had a small hernia 6 months after my redo surgery at my ileostomy site. I had to see a general surgeon as my colorectal wont do that surgery. I had what was called an onlay repair, basically over the muscle with mesh. this was over 3 years ago and it still feels weird in that area sometimes, like a pulling feeling. [ more ]
Kushami ❤️
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J-Pouch ForumsFAP Forum
Whipple Surgery
MF Mike FAP PSD
Mike FAP PSD I was 26 years old in 1987 when I found out from rectal bleeding. At that time I already had polyps in my duodenum. My 3 children all had colons removed at 19 and already had polyps in duodenum. [ more ]
ksr What age did you find out you had FAP? What age did you start growing adenomas polyps in the duodenum? I didn't start growing the polyps in the the rectal stump and duodenum until I was about 36. I had my colorectal surgery when I was 29. Found out I had FAP when I was 28 when i noticed rectal bleeding. Currently get scoped once a year except one year it was twice when one of the polyps had changes to it. [ more ]
Mike FAP PSD Yes, I have an aggressive form of FAP and I just turned 60. A PSD is a pancreas sparing duodenectomy. I needed that because of the polyp burden, size, and high grade displaysia pathology in my duodenum. After 16 years the Polyps have regrown in my new duodenum and are numerous and large again. IF Cleveland Clinic determines the risk is too great they likely will recommend a Whipple surgery. I am scoped at CC 2 times a year. My sister is 50 with FAP and just had a PSD at CC this past June for... [ more ]
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J-Pouch ForumsFAP Forum
30 Years with FAP
R Raychee
ksr Rachel, How is everything going? I know you haven’t posted in two years. I have a rough 3 years at the beginning of my jpouch. karen [ more ]
Raychee ❤️
Raychee Hi Laura, Because I currently am dealing with a family emergency, I am going to do a quick reply just now. Then when I have more time, I shall do more detailed response. My quick answer in go for the pouch, things have greatly improved in that department In The last ten years. Then as you will have a temporary stoma for a while, before take down is done, you will have gained experience of living with a stoma and how you feel about that. The option of a permanent stoma is always an option for... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Lunch box essentials?
Isaiah JonesIsaiah Jones
Isaiah Jones sandwiches, ramen noodles, quesadillas, or leftovers are things I eat all the time. Totally on board with that. I'll take a look into hard rolls. Beef jerky and spicy foods sound super appealing (with caution of course). Thank you! [ more ]
BK 123 Now that I'm working from home I eat a variety of things for lunch including sandwiches, ramen noodles, quesadillas, or leftovers form the night before. When I was in the office I'd bring lunch 2 or 3x a week and this usually consisted of a ham turkey and cheese sandwich on a hard roll with mustard and pickles with cashews on the side. Having a high calorie/protein snack to munch on throughout the day is key. Cashews, yogurt, beef jerky, cottage cheese with crackers are a few things that... [ more ]
Former Member As a vegetarian I do peanut butter and jelly or sunbutter and jelly sandwchiches. Sometimes I will pack desserts like honeybuns and eat desserts for lunch lol. There is vegetarian lunch meat and cheese you can do too with bread. Ensure drinks for protein is good too. [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
Extended release medicine
RondaCRondaC
Former Member ❤️
Former Member I know this thread is old but I wanted to offer info to RondaC. Effexor comes in immediate release form as well . I would ask the doctor for that form. [ more ]
Novanew I was advised not to use extended release meds because without a large intestine the time release is expelled before it can be fully absorbed [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Peanut butter recipes/products?
Isaiah JonesIsaiah Jones
Former Member Banana Bread with peanut butter mixed in. When your making peanut butter bread, you mix bananas and peanut butter in it and stir it up and put it into the oven. Its a recipe, I think you would love it [ more ]
Pouch2021 I eat MaraNatha peanut butter. They have a no sugar added version and a no salt added but I never go for the latter. It’s really good stuff if a bit pricey. [ more ]
AMB Whey protein powder added to peanut butter works very well - you can adjust for consistency and spread on whatever you like. Better control over the ingredients than purchased bars. For crunch you can't beat WASA crackers. Light Rye or other variety without seeds / lower fiber. And if you are ok with honey, and can tolerate wheat germ, which works for me, I used to make these peanut butter balls for my kids' lunch boxes - many many years ago now. I've not experimented but pulverized oatmeal... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Lexapro or Zoloft ? experiences???
PouchomarxPouchomarx
Chook2 I was on lexapro 10mg for two years during my surgeries, helped alot and I gained weight.when I decided to come off it I went cold Turkey and had amazing light headedness for up to three weeks.but that was three months ago and feel alot better now.I know of a person who was on 40mg.It says on the box not to stop taking it and best to see your doctor first. [ more ]
TE Marie It's all an experiment. Unless it makes you physically ill then I take as directed for the first 2 weeks. Some are not in pill form and you can't cut in half. I thought most came in lower doses to start? I don't remember as I've tried so many since I received my fibromyalgia diagnosis in 1997 or 8. I'm on 2 different kinds now that work. Hopefully this one will work Pouchomarx. [ more ]
vanessavy I took prozac 2 times and didn't sleep for 3 days. We all react different. My mom loses weight on Lexapro when I read other gain... [ more ]
See all 22 replies...
J-Pouch ForumsHelp! Need advice now!
Have incontinence from Anus
D DianaT
AMB I didn't even realize that incontinence could be an outcome of pouch reversal. If it was me I think I'd schedule a consultation with another surgeon. Most if the best ones at the main colorectal surgery centers who do revisions will schedule a second opinion as a video conference. I hope there's an answer for you. [ more ]
DianaT He left the J Pouch and rectum intact but told me now that the only way to stop the rectal incontinence is to have JPouch removed which is a very invasive surgery which requires a long recuperation and does not advise it! t [ more ]
Scott F Diana, do you know what sort of ileostomy you have (loop ileostomy or end ileostomy)? Some surgeons remove the J-pouch (and sew up the anal opening) when reverting to a permanent ileostomy, but that can be a difficult surgery. Sometimes the J-pouch is left in place. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
7 YEAR J POUCH ANNIVERSARY REVIEW!!!!
FM Former Member
Former Member DAMN!!! I am happy to hear you are better love!!! I was so worried about you and was praying for you, glad you are okay!!!! [ more ]
Andreita 6 [ more ]
Former Member Cool we are the same!!! I am glad you are better! I was worried about you a lot!!! I am glad you had the resources to go out of state! A lot of people's insurance do not cover out of state doctors. How many bms are you having??? [ more ]
See all 8 replies...

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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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