Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsGeneral Discussion
Help finding a new Gastroenterologist.
CG Corey G
Corey G Hi Scott and Eliza. Thanks for the sound advice. I respect Mayo and got my UC second opinion back in the 80s. Unfortunately, around 10 days ago they said they were not taking Medicare advantage plans and to enroll in regular Medicare with supplement plan which doesn't work for me. I'll keep digging and researching. [ more ]
ElizaB Hi Corey, After someone on this site recommended him to me, I recently started using Dr. Farraye at the Mayo Clinic in Jacksonville. He transferred here from one of the large Boston hospitals and seems very knowledgable about J-Pouch issues. The entire Mayo organization was top notch. [ more ]
Scott F I have family in St. Augustine, and for sophisticated medical care they drive up to Mayo Clinic in Jacksonville. If no one has a specific referral for you that might be a good place to start. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Coconuts and Crohns
SadieM1210SadieM1210
skn69 I drink coconut water for rehydration and have started using coconut sugar but other than that, not enough to give me any sort of positive or negative results. [ more ]
Sara Marie I use tons of coconut products, but a person must proceed with caution as tree nuts (including coconuts) are a common allergen or irritant. I personally have never made any direct correlation with coconut and gut issues. I use coconut creamer or oat milk in my hot tea drinks because cow milk definitely causes irritation and inflammation for me. I also drink coconut water because it has a lot of electrolytes. I usually mix it with home-made veggie juices (carrot/celery and... [ more ]
See all 2 replies...
J-Pouch ForumsK-Pouch Korner
Has anyone with a k-pouch or BCIR been stopped and patted down by TSA airport agent--because of their pouch??
marzmarz
jan15 I agree with their difficult situation. Continent ileostomies unlikely in training manual. Upon thinking about the problem there isn’t any way around it other than providing a one sentence explanation and letting them inspect. It’s up to me to get to airport earlier. Then I won’t get flustered if they need to inspect or see stoma. Honestly that’s worse for them! [ more ]
skn69 They actually do get training (supposedly) about ileostomies, titanium hip joints, pacemakers, and an assortment of other prosthetics...what they do with that training is up to them but I have read that there are people who wear fake ostomy bags to pass drugs in...why not, if they also shove it up their....? I pity the TSA guys who walk a typerope between really ill people and fakes who try to smuggle drugs... [ more ]
jan15 We can’t expect TSA inspectors to know what a catheter is. Nor why we carry around an empty extra large enema container. Let alone two or three duplicate kits. Consider how different we are and how small our Kpouch tribe is. In hindsight I respect their lack of profiling. I doubt any of us look like a terrorist or a bomb thrower. Peace, Jan [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
Finasteride for BPH
AP Al P
Al P Hello Scott. Thanks for your reply, you’ve always been so helpful. My adversion to pharmaceuticals mostly prompts me to ask. I was also wonder if anybody out there in the community has taken this pharmaceutical. Many years of prednisone for UC has made me question the judgement of doctors regarding my body Al [ more ]
Scott F I looked it up and don’t see anything that might affect a J-pouch. Do you have a specific concern? [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Diarrhoea with no other symptoms
K Kushami
Scott F I’m glad you’re feeling better. It could easily have been something like a viral infection, which can clear up on its own. Some medications that can cause diarrhea might not have that effect on J-pouchers. If the mechanism of action is an effect on the colon, we might be effectively “immune” to that side effect. It’s hard to tell, of course, since most side effects happen to just a fraction of users anyway. Good luck! [ more ]
Kushami Update: It went away before I could see my doctor to arrange a stool sample. Happy it’s gone, but I now have no excuse not to start the medication my new doctor prescribed me … which gives most people who take it diarrhoea as a side effect. In fact, it’s so well known for this side effect that some people with motility problems take it to get things moving. (It’s Mestinon, if anyone is wondering. I’m trying it for orthostatic intolerance / autonomic dysfunction.) Oh joy! [ more ]
Kushami I just remembered that I took a 5-day course of prednisolone about three weeks ago. (It was a low dose only.) I don’t remember having the diarrhoea while I was taking it but to be honest I’m in such a state these days that I can’t be sure. It was for bad allergic itching and I was so darned relieved that the itching had stopped that I can’t remember anything else. I must start keeping a medical diary. Will get tested for bugs anyway! [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Hip Replacement on October 10th.
BS Ben S.
Ben S. Thank you for asking. I'm doing well. Trying to take it easy but that is difficult for me because I'm an active person. J-Pouch is fine. I'm healing according to the timeline set forth by the doctor. Also, I have the Boss (my Wife) watching to make sure I don't do anything to jeopardize the surgery. So no biking, hiking, skiing, or rock and ice climbing for a while. But we'll see about that [ more ]
Former Member How are you doing??? [ more ]
See all 2 replies...
J-Pouch ForumsWomen's Health & Pregnancy
24-hour urine collection
K Kushami
Sara Marie I love your use of "exuberant" in reference to BMs. [ more ]
Kushami Final update: I managed to collect most of my urine using the toilet hat, but it wasn’t that easy. I had hold back BMs and so couldn’t void my bladder completely. It was quite stressful because I am unwell (from something else). Also my bladder was damaged by a medication that I took last year. So I am up at all hours to pass a couple of drops of urine that are keeping me awake … and in this case the added hassle of putting the hat under the toilet seat, aiming into it, retrieving it from... [ more ]
Kushami @Sara Marie I had the opposite problem and had to scooch forward to pee into the hat. I managed to get the samples, but only by holding on to my BMs. This meant I didn’t always void my bladder. The toilet hat did help, it wouldn’t have kept BMs out for me either. I will not agree to another test like this unless the doctor has a good reason for it. I am a bit angry with my doctor because he handed me the order without explaining what the tests were or why I was having them. I didn’t see that... [ more ]
See all 11 replies...
J-Pouch ForumsK-Pouch Korner
Leakage of k pouch after surgery
R Razorback
skn69 Hi, Razorback (interesting name!), Your k pouch valve is very new and young in its evolution. It scarred in around the tube over the first month post-op but sometimes it needs a little more time to settle and heal. You can do 1 of 2 things. 1. Put the tube back in for a few weeks and allow it to scar in a bit more (which means that it may take a bit longer for your pouch to grow to its full capacity) or 2. intubate a bit more frequently which can also put excessive stress on the valve. Try... [ more ]
See 1 reply...
J-Pouch ForumsK-Pouch Korner
Looking for a physician
C CindyO
skn69 Hi Cindy, I've had my K pouch since 1979 and moved to Europe in 1983. I have never had a K pouch surgeon here to do the work and revisions. I was either at home or flew home when I did need them urgently. For the 'easy stuff' like scopes, hernias, blockages, bowel twists etc I have a general surgeon who knew nothing about K pouches but was very open to learning. He did a tandem on me when he invited my K pouch surgeon to fly in for emergency surgery and learned a bit about my anatomy while... [ more ]
CindyO Hello jan15, I really know nothing about a scope! I have never had one. I see that many people do, in this forum. Why would I do that and do you go to Dr. Dietz for that? [ more ]
jan15 Dr. Dietz did my kpouch and I highly recommend him. I’m curious if you don’t have annual scopes. Jan [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Pain
MirsiMirsi
Mirsi Hi Duck11. The pain feels all over. Although I believe the worst of the pain seems to lower a bit everyday. It slowly gets better over a few days. My doctor had mentioned a few possibilities including adhesions. I am having a CT on Friday. Hopefully we will see something, although I'm not in pain right now. Isn't that always how these things work! Thanks. [ more ]
duck11 Is it in the same place every time, or more all over your guts? If the latter, it could be some stricturing from adhesions as fiber can get caught in the narrowing and cause partial blockages that eventually pass like yours. Usually they are fairly painful though, but if it’s just a tiny one might cause just discomfort and some slowing of passage. [ more ]
Mirsi Thank you Sarah Marie and Scott. All great suggestions. I will give them a try. I appreciate it! [ more ]
See all 7 replies...
J-Pouch ForumsPouchitis
Best Doctor to see
K Katkando
Fight like a girl Hi Kathy..im from erie pa also. I had dr shen in Cleveland clinic but he did go to NYC. I am now seeing dr jessica Philpott. She's very kind..no dr shen though. She has me starting another biologic. First it was entyvio 2 yrs quit working now she's starting me this Thursday on stelara. 34 yrs with j pouch. I'll give one more try if it doesn't improve these bad awful painful symptoms ill have the surgery to remove j pouch. My opinion..no doctor on erie..stay far away..not knowledgeable at all... [ more ]
Katkando I just read about him today! I would love to see him. Not sure what my plans are but I’m keeping his name close! thank you so much! [ more ]
katenet Can you travel to NYC? If you are able to do so Dr Bo Shen is the best dr. He’s saved my life many times. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Ilex alternative?
lovethatgreylovethatgrey
Pouchomarx had my first pouch done in 2008 and redo in 2015 ....i have tried it all.. [ more ]
lovethatgrey Hi everyone, Thanks so much for your replies. RHolt and Bubba1028 - I will order both products for hubby- hopefully one will be a good alternative. Pouchomarx - My husband uses Metamucil in the evening 1-2 hours after dinner which helps him a lot. Have you tried using Metamucil or something similar (Benefiber, Banatrol, etc.)? He's tried the Benfiber and Banatrol but they didn't work for him. Good luck. [ more ]
Bubba1028 Coloplast clear moister barrier cream does a good job. You can buy a two pack on Amazon for $30. [ more ]
See all 5 replies...
J-Pouch ForumsPouchitis
Vsl3, probiotics via enema?
A AnthonyA
Sara Marie Hi Bill! What kind of probiotic will you put in the enema? I agree that it is a good idea to use filtered and/or distilled water to avoid chemicals. I also wonder if aloe applied via enema would have a positive effect. I eat it sometimes for inflammation and also apply it to my skin, but I never thought about putting it in the other way. It might be interesting! I would only be worried about the lemon juice that most aloe gels and juices are preserved in. Probably would be best just to get... [ more ]
AnthonyA That's good to know. I must admit my use of enemas has been on and off, so I cannot form an opinion yet. [ more ]
Bill K I have been using warm water enemas for 6 months and it has changed everything for me. I use the enema twice a day. I had trouble emptying pouch,which means a lot of trips to bathroom. I went from 10 -12, to 4-6 trips using enemas. I am changing over today to distilled water and I am going to put a dose of probiotic in enema. I haven’t been able to take probiotics as they upset my intestines/stomach too much. It just make sense to deliver meds where they are needed. Changing to distilled... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Going Number 1 and 2
lovethatgreylovethatgrey
Mysticobra When I had my pouch I figured while I'm there I may as well. Now the funny thing is I no longer have it. I have an ileo. I go in to empty and pee. But I get busy with the empty and just forget to pee. Lol. So I have to go back. I guess. I know forgetfulness come with age. But this? Really Hahaha.. Weird. I know. But that's "me". Richard [ more ]
PouchLogic Sometimes it can be difficult especially if I really need to do one or the other. Tell him to keep practicing and do his kegels it will make a difference. [ more ]
New577 For the first 8-12 months I could not separate the two. I had to sit for pee because a poop was right after. It was very frustrating. Sometime during the 8-12 month mark I started being able to pee without pooping most of the time; although if the pouch is full enough I’ll just sit down and do both. But I will admit I was skeptical that I would ever attain this ability. I will take the win at this point. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Arthritis related IBD - (inflammation)
BM boy's mom
Jan Dollar Osteoarthritis generally affects the middle and distal joints in the fingers. If your knuckle joints are affected, it points to inflammatory arthritis, like RA or spondylitis. Spondylosis is not related to spondylitis. But, regardless, your rheumy will sort it out. Good luck. Jan [ more ]
Pouchomarx I have had lower back pain on and off for a few years. I went to pain mgmt 2 years ago and they ended up doing MRI. showed I had disc degeneration of L4 and L5. Stated it did not show AS, but spondylosis. And some minor arthritis in neck. Did PT for a few months and I see chiropractor 2 times a month and my back has been good. Knock on wood. Worst part is my fingers. Middle joint on middle finger was really sore and doc injected it but X-ray showed inflammation. It felt good for a few. Weeks... [ more ]
Pouch2021 Agree with Jan. Would not assume you have RA particularly given the chronicity you’re describing (history of injections in the past). OA is by far the most common type of chronic joint pain. If inflammatory (not OA), there are many types of immune mediated arthritis, including those that don’t fit neatly into any classification schema. Also you can have seronegative RA, meaning negative RF and CCP, so there won’t be any one specific lab to diagnose or rule out disease. All of the... [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Physillum POWDER
J Jpouchlolly
Jpouchlolly I’m not at home but it’s the Vanilla plant protein from Costco. Lunch might be egg on toast, tuna in a wrap, homemade soup, Dinner is meat , a starch, salad or veg. Pretty normal stuff. I try and finish dinner by 6 pm, nothing in the evening. I just throw the black sesame powder in because I looked it up and it’s good for you. Lol [ more ]
Sara Marie Hey Lolly, What kind of plant protein do you use in your shake? Does black sunflower seed powder have particular health benefits? I agree, keeping healthy with a j-pouch is a full time job. I'm curious about what you mean by lunch and dinner being normal. What is normal? [ more ]
Mary O ❤️
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Is this pouchitis or inflammation in the small intestine?
B Brellis
Sara Marie Dang, I was hoping it was a simple thing. I once had constant pain that moved around my chest and abdomen that I was convinced it was a big problem. I went to the doctor and had all these scans (because I had colon cancer in the past) and they ended up telling me I had acid reflux. I have had intense lower back pain before but never for extended amounts of time, and usually it was associated with menstruation. I have had dull lower back pain from pouch inflammation, but it didn't persist for... [ more ]
Brellis I dont think its gas because I often have gas problems but thats usually fine especially when I can let it out. This feeling is like an intense ache that comes and goes in waves (mostly on than off though). I dont know any better way to describe it for my self than when you were younger and had a stomach bug or like a flew and your stomach felt off .. just the difference that almost all pain is in the back down towards my bum. I’ve already been at my local doctor just to see so it wasnt my... [ more ]
Sara Marie Have you ever tried the anti-gas medications? Sometimes gas can be very painful. [ more ]
See all 3 replies...
J-Pouch ForumsFAP Forum
Long term prospects of J pouch and FAP
S Scaramouche
BillV I have FAP and had a J pouch for 26 years and a malignant polyp was found near the anal sphincter and successfully removed. The surgery compromised the inner sphincter. Six years later, high grade dysplasia was found in the same area and pouch removal was recommended. Since I strongly did not want an end ileostomy with its associated issues, I opted to get a continent ileostomy, a procedure that does not require having an external bag. The procedure being performed in the USA is the Kock... [ more ]
Kushami @Scaramouche , I’m not sure what happens if a j-pouch gets polyps, but if it fails, yes, you have to go to an ileostomy. Sometimes they leave the j-pouch in place, but usually they have to remove it. If you live somewhere with expert surgeons (e.g. USA), they can sometimes fix a faulty j-pouch depending on what’s wrong (called a revision) or even create a whole new one (called a redo). [ more ]
ksr Lauren, removing polyps from the rectal stump isn’t a problem, as long as you stay on top of it and get it done. I don’t want an ileostomy or any other hookup if possible. If I were told I had rectal cancer or the polyps were changing in less than 6 months, I could see the reason to change to a different output way. [ more ]
See all 10 replies...
J-Pouch ForumsPouchitis
Pouchitis + fever
SmallItalianSmallItalian
Kushami I feel hot and achy with pouchitis (diarrhea, mild cramping, funny colour and smell to BMs). Not sure whether I actually had a low-grade fever as I didn’t have a thermometer back then, but that’s how it felt. [ more ]
Scott Sheridan Yes, I get fevers with my pouchitis. It is a way for the body to burn off bad bugs in the body that are associated with your pouchitis because of the bacteria in your pouch. How are your bowel movements when you are not suffering from pouchitis? [ more ]
jodiloveslife I always get a low grade fever with pouchitis. I hope you get to feeling better! [ more ]
See all 4 replies...
J-Pouch ForumsPouchitis
Reverse the Procedure
SS Scott Sheridan
Scott F Any ileostomy (including a J-pouch) will require multiple toilet visits per day. A well-functioning J-pouch typically has to be emptied 4-6 times per day, but an external appliance also requires plenty of maintenance. I have to be on Cipro every day, but it doesn’t cause me any major problems, and I consider it much better in my case than an external appliance. YMMV. [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Need advice on fistula surgery
J j-poucher
BK 123 You will notice it. It almost felt like there was a bone on the other side of the skin, it was solid to the touch rather than soft. If you are concerned, an MRI may be in order. [ more ]
Former Member Thank you. So I would notice it? I think what I have is hemorrhoids from all the straining but sometimes I wonder. Thank you very much for your reply [ more ]
BK 123 I had a drain placed in my fistula as well. It was a bit uncomfortable but it did not get in the way of my life one bit. After about three months, my surgeon removed it and the fistula almost healed completely. An MRI showed that the fistula is still present but not as active before the procedure. I will say, that I'm on Humira and Tinidazole, which has worked wonders getting my pouchitis under control, and thus aiding in the healing of the fistula. The fistula drainage seems to come and go... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
10 weeks J pouch post op
PD Phil D!
Asa Lay It takes time for your new colon setup to start working. Your small intestine is not used to being in charge. Scott is right. Try not to go when you feel you have to go. This will help the new pouch to expand. Also how much are you eating? Are eating or snacking at night? For 58 years I ate what I wanted when I wanted, but after surgery, I had re-train myself to eat differently. Be sure to eat about 5 small meals and try avoiding eating large meals. My nurse told me when I was having a... [ more ]
Scott F People get different advice about this from their doctors (and sometimes get no advice at all). The advice I got was to gradually (and gently) begin to delay bathroom trips to “stretch the pouch.” For most of us the delay is mildly uncomfortable - agony or accidents are not a normal part of this process. So what happens if you don’t obey the signal you’re currently using as your cue to go to the bathroom? Formed stool isn’t optimal for most J-pouchers. Some do just fine with it, but for many... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Nightmare at NYU
KennyJG44KennyJG44
athena Hi Kenny, I’m so sorry you’ve been dealing with this, and the lousy care in the ER (which is not uncommon—they can treat heart attacks and strokes, but this stuff is kind of specialized.) Cuffitis sucks. I had it for four and a half years, finally had a pouch revision that got rid of that tissue so that I didn’t get cancer—but that injured my internal sphincter, which is no fun to live with. I couldn’t get the suppositories in that they wanted me to treat with, it was so inflamed when I had... [ more ]
Maverick Plus Good to know that you finally got answers. Do you have a new GI doc now? That would be of great help to you in the future. [ more ]
KennyJG44 Hi @SadieM1210 - Apologies - probably published results on another thread. Scope showed moderate pouchitis, which I've had in the past. But more importantly, showed an acute cuffitis, which I've never had in my 20 years since surgery. Definitely gave me a new set of symptoms. Flagyl helped clear that up - though I feel like I"m still dealing with residual inflammation of pouch/cuff. [ more ]
See all 22 replies...
J-Pouch ForumsHelp! Need advice now!
Doctor in NOLA
SB southern belle
athena Hi! Well, I hope I can help; I lived in NOLA when I first came down with UC, and had all my initial treatments there, including meds and surgeries. I had my initial pouch surgery there in 2011, so I can tell you who NOT to see as a surgeon—Dr. Sean Mayfield. He messed my pouch up badly, lied to me about his (in)experience with them, ignored my allergies, and I have suffered from his incompetence for years. Ochsner wasn’t great either—I had to go there to clean up the mess Mayfield made (he... [ more ]
southern belle thank you for your response. I have taken cipro and it helps but only when I'm actively taking it. Not a 2 week round. I actually took it for 6 weeks trying to get a skin rash under control and it helped til I stopped. I do know that I need a gastro with Jpouch knowledge. And I know they do the surgery at Ocshner Hospital in NOLA. Hopefully someone on this site can give me a rec. [ more ]
Scott F Although some surgeons provide extended ongoing care for their J-pouch patients, most J-pouchers get care from a gastroenterologist. It can be hard to find a J-pouch-knowledgeable GI unless you are in the same area as at least one active J-pouch surgeon. Accidents are one common sign of pouchitis, which usually doesn’t clear up without treatment (typically a couple of weeks of Cipro or Flagyl). I wouldn’t expect loperamide to help much, for most of the causes of accidents. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Any Advice on Eggs?
JS julie s
seagull I am in the same boat as Julie S .... would love to hear if anyone has figured out how to balance eggs with something to counteract the side effects! [ more ]
Chook2 I eat alot of eggs but maybe it's the type your using and storage of them. I use free range eggs and refrigerate them and use within a week,and two at a time. [ more ]
Scott F I don’t think Beano is likely to help with eggs - Beano is a specific enzyme that helps digest a single molecule that causes gas, found in things like broccoli and cabbage. I’m pretty sure there’s no alpha-galactoside in eggs. [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
I feel like I’m suffering
S Shy
Rudy I am so thankful that I found this thread, not just for the I information I receive, but also as a way to offer support to our “pouch pals.” I had my surgery in 1981 at the Mayo, and it seems I might be the old-timer in the group. I initially posted to see if others have had any bladder related issues or issues concerning abdominal scar tissue. I was part of a group that was being tracked for several years, and it seems that the surgery has evolved. Shy, hope you’re feeling better this week... [ more ]
Maverick Plus Any updates? I sure hope you've found some answers! [ more ]
girlt Hoping to hear how you are soon, Shy, whatever the case. There is support here for you to help keep you from feeling alone, and maybe practical advice to help as well, if you want it just ask - what foods to eat and what to avoid, supplementation, products to soothe pain, etc. [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Inflectra
K kjcole
SadieM1210 @kjcole I started on Inflectra and did just fine. No side effects, no issues with the infusion. The pain you are talking about sounds like you might have a stricture. After I started my infusions that pain went away. I hope it works out for you. [ more ]
Sara Marie I didn't know about the 20 year Crohn's thing. What's the logic behind that? Can you provide me with a link to that information? I googled but did not find. Thank you! [ more ]
kjcole Sara, I did have UC about 20 years ago and Mayo Clinic does say that about 20 years out you may find out you have Crohn's. They also say it isn't hereditary but my mom and her brother also have Crohn's plus other family members have UC and Crohn's. Just wanted to know if anyone has had any issues with inflectra. I usually don't experience side effects from meds. They wanted to start me o. Humira but insurance won't approve it. They wanted me to start back on prednisone and other traditional... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Leakage
OP Oh Poo
SadieM1210 I had no idea there was such a thing as anal tampons. That just sounds uncomfortable plus I'm sure they'll be useless if you have incontinence? [ more ]
Nebula At night I had to use urinary and incontinence pads.. I also put a towel and chuxs on my side of the bed To protect the mattress. During the day I wear a thong pad [ more ]
kathy smith I once tried OB tampons but they were uncomfortable. They're pretty small before they expand so I figured they'd be alright. But maybe others have had better luck with them. kathy [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Pouchitis
GEB56GEB56
GEB56 Thanks. I use psyllium powder three times a day and think it is a great product. Gives my stool some form/bulk. [ more ]
Jpouchlolly Sorry to hear your really struggling, please read Physillum Powder. Maybe that might help you. jpouchlolly [ more ]
GEB56 Hi AMB. Sad you have had simar issues, but feel better that I. Not alone in my battle. I will be picking up Hydrocortisone suppositories today at local compound pharmacy and will let you know how that goes. In the meantime, I am partially improved on Augmentin. Thanks for your reply to my post. Much appreciated. [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Scar Tissue
R Rudy
Rudy I hope UT works out. [ more ]
Sara Marie Yes I’d like to be connected with someone before anything serious happens. The odds are against me at this point! [ more ]
Rudy I think UT Austin would be a very good place to check out. Do you have anyone who could refer you to UT? Do you have a primary or family physician who would be willing to do a referral? In the meantime, perhaps a referral would help get you to the the “hard to reach” GI. If if she doesn’t want to see you, she might know of someone who would. Be a squeaky wheel! You definitely need to have someone to go to in case of an emergency. Please do this soon, and keep me updated. I’m eager to hear of... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
How to stop clenching
A Andreita
Former Member How are you Andrieta??? Are you okay??? [ more ]
Li__ I highly recommend seeing a pelvic floor therapist! I saw one for this exact problem and it changed everything. She worked on strengthening my pelvic floor muscles and gave me home exercises to do if any issues arise. You do have to put in the work, but it is completely worth it in the end. The exercises still help me to this day! [ more ]
Andreita Not yet I need to make an appointment with my surgeon or GP. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Second j pouch?
duck11duck11
AmyH Hi! I just got my second J-pouch in September. I have a temporary ileostomy right now while it heals. Long story short, I went to Cleveland Clinic for a second opinion after having my takedown on 7/12/22 I suffered with lots of pain, unable to empty, blood and burning. I was told it was pouchitis. When I got to Cleveland Clinic, they realized my j-pouch was twisted 360 degrees and was leaking. I had open surgery to remove my current J-pouch, make a new one and now have a temporary double... [ more ]
Fight like a girl As far as surgeons go, dies anyone have experience with ccf dr Scott steele at Cleveland? I too am now considering removing j pouch. My best surgeon out at ccf retired. Any info would be greatly appreciated. & best wishes on your decision too. Thank you. [ more ]
David W Nothing wrong with exploring your options. Good luck with making this difficult decision. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
My coccyx hurts
P Pouch2021
Sara Marie I hear that. I never really know what's going on with the pouch. Maybe one day I'll get a pouchoscopy if I find a doctor in my area that specializes in J-pouches. I don't want some beginner poking around in there. [ more ]
Pouch2021 Sara Marie, Most sinus tracts are at the anastomosis where the pouch is stapled/sewn to the anal canal, though you can get them at other suture lines. Mine was discovered almost immediately after takedown as I had serial imaging to monitor unrelated pelvic abscesses that occurred after stage 2. Yes, the sinus tract was the cause of the bone infection. My surgeon did the usual pouchogram with contrast prior to takedown to make sure there were no leaks but that study didn’t catch it. I was... [ more ]
tf You learn something new all the time here. That's what I love about this site. I never heard of this sinus issue. Thx! [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
My pouch never feels completely empty
L LIGuy11
CTBarrister Hyoscyamine is the generic of Levsin. It is an anti-spasmodic that is typically taken 45 minutes before meals to calm down a spasmodic pouch. What it's really designed to prevent is machine gun bursts of bowel movements after eating meals due to the bowel spasming or excessive motility. I don't think it really has anything to do with incomplete evacuation of the pouch. It's designed to prevent the opposite problem of explosive diarrhea due to spasms of the pouch or bowels. There could be... [ more ]
tf Yes, sorry I misspelled. I only use prn. At one time I needed it often. It works for me. My bidet hooked up to toilet seat. I have cold, warm & hot. It depends on how sore I am. Mostly warm. [ more ]
Sara Marie I looked up hyoscyamine-tried to look up "hyosiomine" but the internet corrected me. Hyoscyamine sounds intense! Is that what you meant? Do you use your warm water bidet for an enema? [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Really strange...scab/irritation covering waistline incision site from 2005?!
samwoldsamwold
girlt Maybe your scarred area is at least partially numb and you didn’t feel the soreness until it spread a little onto area that does have more or normal feeling? I don’t know what size your laparoscopic scar/s are/is, because I had traditional long surgical scar, and the entire scar had no feeling at all for a very long time. Some of it still doesn’t. [ more ]
RHolt Hi Samwold, I have not had this --but I didn't have a laparoscopy (was your entire colon removed by this method? I have heard of that). I think you might be onto something by saying that it is at your waistline and perhaps your pants were rubbing against it. The chafing could have irritated the scar and ultimately caused the scab. It is odd, though, that this is the first time it has happened since 2005. How weird! Did something change? Tighter pant waistline? Extremely hot weather? I hope... [ more ]
samwold Thanks, Steve. I looked it up, and it looked nothing like that. It basically just looked like a scab you would have after you you cut/scrape your skin. It just ran along my waistline. It seems like it is feeling better after the scab was removed by the doctor and some ointment was applied. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
8 YEAR PROCTOCOLECTOMY ANNIVERSARY COMING UP! ANY QUESTIONS???
FM Former Member
Former Member So I never had problems with leakage too much unless I was napping or sleeping overnight. I was able to stop wearing diapers after close to a year. I got to hours of holding poop in after 3 months I think. [ more ]
Eric in Seattle When are you able to leave the house with just an underwear liner but not a diaper? And how long did it take you to get to hours? I ask because I'm headed back to the office. There are only 2 private bathrooms for 100 people! [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Random surge of diarrhea
ValenValen
Valen @skn69 Yep! I’m almost 100% positive it was food poisoning from some raviolis I ate on Saturday and Sunday. I wasn’t sure but when my mom started having my same symptoms and she also ate the raviolis I just put two and two together! [ more ]
skn69 Have you had a covid test recently? I had someone on my site (K pouchers) who showed exactly the same signs...slight cold-like symptoms then stomach upset, diarrhea, etc...it was a very unexpected result but... If not, what have you been eating? Have you had an allergic reaction to any foods? Stomach flu? It is the season...and it is going around, and around... How are you doing now? Has it passed? Try dry toast, tea, rice, applesauce and bananas (not all together)...etc The BRAT diet helps... [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Emergency lysis surgery for adhesions, now constipated
WinterberryWinterberry
skn69 So sorry for this mess...try to walk as much as possible...it helps. If you can't exactly walk, try bouncing up & down on your toes while standing...it keeps your guts moving or at least can help to get them started again. I never had an ileus until my mid-40's, dozens of abdominal surgeries and zip...then I had a pouch valve redo and everything was fine until it wasn't. For some reason, your guts decide sometimes that they need a break and go to sleep after major trauma. They will come... [ more ]
Winterberry I’ve been admitted and have another NG tube in my nose. My second in 10 days. They did a CT scan with contrast dye. Nothing is worrying, just that my bowels decided the sudden surgery and manipulation, etc., was all too much and they went to sleep. My first question was about my J pouch. They said it looked fine. Just a lot of gut distension and small blocks, even though I barely ate a slice of toast. I’m on IV fluids and NG tube. I suspect I’ll be here a few days. I’ll try to update so that... [ more ]
duck11 What an awful experience, your h9me experience sounds a bit like an ileus. I had a few post op even after my bowels had woken up, they then proceeded to go back to sleep. The pain meds definitely don’t help things but I understand how hard it is when you are in so much pain. Glad you are back in hospital, sounds like where you should be. Hopefully this is a one off blockage incident that you can leave behind you. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Imodium
B Bubba1028
jannyg I did the same, I could buy the generic at Sam’s Club & get two 200 tab bottles for round $5-6.00, until some idiots had start using it for “other” reasons, and they took off their shelves. Now I end up ordering it on eBay from the east coast for triple the price. I normally take 6 to 8 per day, been trying to wean myself down to 6 per day. Very frustrating! [ more ]
AnthonyA I see on Amazon UK it is £4.74 for 48 tabs, so the max 8 a day would be £25 a month. I would be tempted to speak to individual independent pharmacies to see if they can do you a bulk price to get it cheaper. At an online chemist in UK, 60 tabs for £4.99. https://ayp.healthcare/60-lope...amp;description=true Maybe if the market is sewn up in the US, try abroad perhaps. [ more ]
Bubba1028 The generic Imodium is what I’m talking about- loperamide. Sorry. I should clarify. The brand name would be way more expensive. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Pelvic floor therapy
L Lflower1991
Nebula I am starting pelvic floor therapy next week. Pelvic Pelvic floor therapy could help everybody especially those of us that have had major abdomial surgery. [ more ]
Kmiller My surgeon recommended pelvic floor therapy and said he does for many of his patients. I learned a lot about strengthening my muscles, how to properly do kegals, breathing exercises, etc. It was worthwhile for me. [ more ]
Eric in Seattle In Seattle there is one PT at Swedish that specializes in this and works closely with the rectal surgeon. Her name is Peg and she is fantastic. [ more ]
See all 5 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.
×