Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsK-Pouch Korner
New kock pouch, sudden complication. Please help!
R readann
readann Thanks, Jan! You’re amazing! [ more ]
jan15 my stoma does bleed a bit but nothing to worry about. mine also drips and produces much mucus. I do use nursing pad, which is less than 25$ a year (target brand). there are reusable pads. don't know of medical ones that insurance covers. the medical ones/insurance covered, for sex, are bulky. ask stoma nurse. you can ask the stoma nurse as I simply can't recall, but possible you are producing more mucus because stoma, valve and everything else is still very tender. It took weeks, into two... [ more ]
readann Thanks, Jan! Luckily, my electrolytes have been regularly tested for years, so now is no different. I drink a lot of electrolytes and eat salt! Great too though! Especially since I take a lot of drugs to speed motility. after I’m discharged I’ll followup with the stoma nurse shortly after to come back and get the catheter removed and learn how to intubate. She told me I can contact her any time with questions. Through all my surgeries, my hospital (NOT community) stoma nurses have been... [ more ]
See all 13 replies...
J-Pouch ForumsFAP Forum
Whipple Surgery after previous Pancreas Sparing Duodenectomy
MF Mike FAP PSD
Sara Marie Well, that's better news than seeing a mass. I hope someone will comment who knows about/has experience with the Whipple surgery. [ more ]
Mike FAP PSD In last scopes at CC had high grade dysplasia in upper GI and pouch. They will look for cancer during surgery but CT scan did not detect any mass. [ more ]
Sara Marie I had to look up the Whipple Surgery. It sounds so sweet, like someone should be telling you not to squeeze the Charmin, but when you read up, it sounds scary. Is there cancer? [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
VSL#3DS
G GraceB
Sara Marie I think so! For me, organic psyllium husk powder (I always say "organic" because the non-organic is markedly different and doesn't work as well for me) works to slow down my guts, which allows for more establishment of good flora by the use of probiotic foods & supplements. Here's an analogy: In my neighborhood I used to know my neighbors, and now with the horrible economy in Austin, TX, it's impossible for normal people to afford to live in my hood (or any place within a hundred miles). [ more ]
lclassen Along the same lines, is there any value in pre-biotics taken with a probiotic? [ more ]
Scott F There are really two different things being talked about here. Basic, reasonably priced probiotics, both natural (in food) and in capsule form, are very likely good to some degree for the balance of bacteria in the colon. J-pouchers don't have colons, of course, so it's more of a leap to suppose that they are useful for us, but they might be. Quite separately, very high doses of probiotic bacteria, originally under the name VSL #3, have been shown in J-pouchers to decrease the frequency of... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Gastrocolic Reflex or something else?
ValenValen
Valen @New577 Yeah, I had that exact thought of my body like ‘emptying out’ which is why I’m going so frequently. When I’m on my menstrual cycle everything gets really backed up. Yes, I go 2-3 times a day normally, but it’s always been great for me and I’ve never experienced any ‘bad effects’, for lack of a better word. Just kind of annoyed at this new switch up. This jpouch loves to keep me on my toes! [ more ]
New577 Hi, I have had some similar but not identical experiences. First off, if your going 2x/day, that seems like a very low amount to me. I go 4-6 times per day and I consider that a very good day for me. there are some days when I eat less than the day before, its seems like my BMs are very large and frequent. It seems like I am purging several days of food. It’s weird. I try not to worry about changes unless it’s going to affect my QOL. Try to get back to your normal routine, you know, the one... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Just relocated to Sarasota. Desperate need of Colon Rectal surgeon who knows J-pouches
P PGR
ljh824 If you are willing to drive to Orlando, Dr. John Monson saved my life. I trust him 100% and he's a great doc. Best of luck. [ more ]
Caty I realize that it's a long distance for you, but the Cleveland Clinic is located in Weston, Florida, near West Palm Beach. My colo-rectal surgeon there is Juan Nogueras, M.D. He has been in practice for 20+ years. He's quite renown. You can Google him... Caty [ more ]
BarbieG I know how you feel. Moved here from upstate NY, all my docs were in NYC. I just started see Dr. Khazanchi of Florida Digestive Health. He seems to know Jpouch’s. I’ve had mine for a long time. So hate to resort to GI telling what to do. He seems to want to help. Very busy with lots of locations but if you have a Jpouch, I think you get a little more attention. Make sure you mention it. Dr. Khazanchi is in Castle Connoly. How are you doing? I live on Pepto. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Prednisone dosage
JK Johnny K
Johnny K Thanks, I appreciate the information! [ more ]
BK 123 Whenever my GI prescribes me Prednisone he gives me a script for Omeprazole to go along with it. He says it's to prevent developing ulcers while taking the Prednisone. I haven't had any stomach soreness when taking both, maybe it's worth asking your doctor? I believe it's similar to Prilosec. just my two cents. [ more ]
Johnny K Thanks for the response. I'm not sure why I had the reaction. I've taken Prednisone before without any problems. Maybe in lesser doses. Who knows? Of course, I took a lot of it years ago, when I was sick and before my J Pouch surgery. I try to forget those days. Either way, I just stopped it cold and don't seem to be having any issues, so I guess you guys were right! Thanks for all the help. John [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
Osteopenia
H HK2000
AMB Thanks to all who commented. I have been soaking up sun when it is shining and supplementing with vitamin D, trying to keep up Calcium with diet alone - not the best, but supplements, even liquid, don't sit well with my pouch. My situation was complicated by a bad leg injury a year prior to the colectomy. I jumped down an embankment and crushed the tibial plateau. I'm convinced that the root cause of the injury was low blood count from a guy bleed the week prior, leading to tiredness and... [ more ]
jan15 chiming in w the 'wisdom' of 75 yo woman w osteoporosis and cd. have a k pouch after years of problems w the j. had woefully too much prednisone when first treated for cd, which is most likely the culprit. in about one year went from + side of the bell curve to the - side. I've reversed it slightly by: weight bearing exercises; 2 m walking daily; stairs; green veggies and yoga, yes yoga helps bone density. contracting muscles pulls on tendons that in turns pulls on bones and that's what... [ more ]
Caty Hello HK2000, I am a 69 year old woman with an ileostomy; previously had a j-pouch. In 2020 my primary care physician highly recommended that I see an endocrinologist because of osteopenia, and I'm glad he did. I was already taking Vitamin D (50,000 units) once a week for several years and my Vitamin D level has stabilized. I was not taking Calcium and the endocrinologist suggested 1,000 mg a day, so I take a 500 mg chewable twice a day (morning and evening). My endo also placed me on... [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
First option treatment for mild pouchitis
K Kushami
Sara Marie Thanks for the description. It's interesting how so many people experience this differently. I have watery greenish BMs when I drink green drinks, sometimes, depending on how much psyllium I have had in advance. And my poo randomly smells strange and different, it seems. Sometimes it's kind of like I have had asparagus when I haven't, or sometimes it's smells like it used to when I had a colon, and sometimes it smells completely unprocessed like it did when I was going through chemo after I... [ more ]
Kushami For me, it’s aching muscles/bones (like the start of the flu), watery greenish BMs with a distinctive different smell to normal, slight feverish feeling (not enough to register as having a temperature), and mild abdominal cramps. [ more ]
Kushami Thank everyone for the replies. Wouldn’t you know it, as soon as my pouch was “threatened” with medical attention, the symptoms improved and I got back to normal within 24 hours. Interesting to note that I passed almost no gas while I had the pouchitis. Just as well, because passing gas while lying in bed plus diarrhea would be a dangerous combination. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Blood & Stool Samples
C capper
capper Never for a moment did I not think about the person who has to work with that stuff in the lab. Not a profession I would want to be in! [ more ]
Scott F 72-hour fecal fat is a (somewhat unreliable) test for malabsorption. The other chemistries that she ordered are less commonly collected, but may be intended to rule out things like pancreatic issues. Your symptoms and issues will have hopefully guided the doctor in this. The collection is indeed disgusting, but now imagine the poor tech who has to open and measure that stuff. [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Pouchitis?
J JHendrix
JHendrix Interesting. Something else to consider. I had a diverting ileostomy for about a year and a half and, just prior to getting that, I had a small mucosal prolapse. I was very concerned that it would still be there once the j pouch was reattached but it wasn't, thankfully. I guess I'd better make that doctor's appointment. (I am not really considered 'tall and thin' but I don't have much belly fat!) Thanks for all of the input to help me sort this out. [ more ]
AMB In working though the differential diagnosis another consideration in addition to cuffitis and pouchitis is mucosal prolapse. It can occur at different parts of the pouch and can interfere with evacuation, causing more frequency, incomplete emptying, painful evacuation, spasm, etc. It is said to be more common in tall, thin people without much abdominal wall fat. Diagnosed with barium defecogram and can be treated by specialists with endoscopic procedures. [ more ]
JHendrix The frequency and urgency have continued as has the discomfort (sometimes big pain) when there is stool in the pouch although there often isn't much when I empty. It reminds me of colitis but the stool is not watery. I'm have difficulty describing it, but there's a sense of swelling towards the tailbone but not as high. (I can't palpate anything from the outside) Just an odd feeling. I have hydrocortisone suppositories that I've decided to try although it may be a dumb idea. So far they just... [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Advice Please--Radiation with J-Pouch
N Nick10136
CTBarrister I am a survivor of thyroid cancer and part of my treatment involved drinking radioactive liquid iodine (157 millicuries, a very high dosage). The adjustment that was made was to give me a liquid dosage rather than pills because of my bowel disease and concerns that the radioactive iodine wouldn't be properly absorbed. Although I was classified as stage 3 cancer because the cancer had begun to metastasize into adjacent lymph nodes, I survived and so did my J Pouch. I didn't have any side... [ more ]
Nick10136 News577: Thanks for your response. My J-Pouch surgeon, Dr. Safar, Johns Hopkins, also recommended no radiation and that is why I chose to have the prostate removed. I have yet to speak with him about salvage radiation. My prostate surgeon, Dr. Bivolacqua, also from Johns Hopkins, did the surgery; not robotic surgery. He had to make an incision from my belly button all the way to just above my penis. He had done many prostate removals and a number of those removals included individuals with a... [ more ]
New577 Hi, Based on your post, you would be considering salvage radiation therapy since your already had an RP. my surgeon told told me prior to jpouch surgery and recently again, under no circumstances should I ever have radiation to that area as it could cause the pouch to stiffen and then fail to work. I would check back with your colo rectal surgeon and get his thoughts as I can only tell you what I have been told. i still have my prostate, but I run a high psa. No sign of PCA yet, but the... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Fiber supplement drinks
B Bubba1028
Deb C Does the product your doctor recommended contain an artificial sweetener? Many people seem to have problems with them, including me. [ more ]
Santosh I used psyllium husk powder it's working very well for me. [ more ]
Scott F I used Fibercon years ago and it worked okay. I think the powders mix better with stomach contents and work better for J-pouchers than tablets or capsules - at least that seems true in my body. [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Stomach Pain & burning
G grandmaof1
Jacqueline Been having burning on and off since pouchitis and some terminal ileum ulcers were found.Little lower abdomen pain at times too. [ more ]
temoty i'm having this same problem. I've had j-pouch since 2000. I get burning and some cramping every time I drink or eat anything recently. I also just got out of hospital for partial obstruction. Does anyone know where this pain and cramping comes from every time I drink or eat? I feel bloated. [ more ]
liz11 could also be bacterial overgrowth. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Pouch excision
JA Joey A
Kushami ❤️
Joey A Thank you! I’ve used Xifaxan but it isn’t as effective as Cipro. [ more ]
AMB If Cipro makes you feel better, but doc doesn't want to prescribe long term because of black box warnings, it might be worth asking about Rifaximin. Unlike other antibiotics it isn't systemically absorbed. So if it works, you can stay on it without worrying about side effects. It is expensive; my first prescriptions were filled through a specialty pharmacy with no co-pay, though. And now I am ordering through a Canadian pharmacy at a tolerable cost (thanks to a tip from a member in this site.) [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
Wondering if I'm alone with my two very weird non-medial pouchy experiences.
NYC GooglerNYC Googler
lclassen https://www.j-pouch.org/topic/...3#695026203060254243 Andreita, I have the bathroom dream frequently! And, that's when I usually wake up and have already dumped in the bed! Ugghh. [ more ]
NYC Googler For me it's kind of life changing. I don't believe in vegetables, except for artichokes so there's very little bulk in my eat anything I want diet. Adding that largish teaspoon Metamucil in the morning made a world of difference. And yes why the hell wasn't I ordered to take in 20 years ago. Diarrhea you better run, your Kryptonite is coming down and it's gonna "Bulk you up!". [ more ]
Sara Marie NYC Googler, same here! I tried plain old organic psyllium husk powder (main ingredient in metamucil, except for the organic part) finally after many years of watery stools. I had always thought it was for constipation, but then a friend recommended it for gut health and I started reading up. Boy did I feel like a doofus! I also wondered why my GI doc didn't tell me about it so long ago? What a strange, antisocial thing to do! Maybe he didn't like me. Or (gasp) maybe he, who specialized in... [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Night time bathroom and liquid absorption
Brad LoomanBrad Looman
New577 Hi Brad, I tend to agree with everyone here. Having said that, you have a pouch for 25 years, congrats for being a long timer! (Ideally I should be getting advice from you, as I am only a 1 year poucher). i think everyone is different but I take Imodium 3 times daily (breakfast dinner and bedtime) to slow things down and limit liquid discharge. It’s always a work in progress. I eat two big meals a day and try not to eat past 6 pm. this generally gives me good results, but certain non GI meds... [ more ]
Brad Looman 25 years [ more ]
AMB How long have you had your pouch? [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Do you typically see blood with pouchitis
I Ibdmom
Ibdmom Thanks to all for your input. It definitely was a great relief to hear! I think the bleeding comes from her possibly straining. I think doctor would have seen if she had a hemorrhoid, but it is possible that it hides. It is definitely not huge amounts comparatively to when she was sick with UC. Curious to see if she begins to feel better in these coming weeks knowing that she checked out ok. [ more ]
Doug K The IPS could cause the belly pain, but I agree - blood in stool is not a symptom of either IPS or Pelvic Floor - - a hemorrhoid that hides and comes arounds every so often sound like a possibility. They generally don’t bleed a ton, but enough to notice. [ more ]
New577 Hi, Glad to hear none of the usual suspects were found. I agree with Scott in that IPS nor pelvic floor dysfunction should cause bleeding. I also suffer from IPS (not surprising since I was a lifelong IBS sufferer). Perhaps you can have your daughter make a note or inform you when there is blood and where found (stool, toilet paper ) and keep track to see a pattern and determine if these are transient events. I know researching and keeping up with pouch conditions is not ideal, however... [ more ]
See all 17 replies...
J-Pouch ForumsHelp! Need advice now!
Anal structure + Pouchitis ++
Not your average gal!Not your average gal!
Not your average gal! Thank you! My life blew up between my post and response here. Situation now resolved. Lol i am realizing because of this how much stress plays a part in my symptoms. When i am in my own stress free zone, things settle to some degree. But not a guarantee. And yes, i think they might have mentioned biologics. The surgeon is scheduling me for dilation. So this is news that it might not be necessary and pouchitis inflammation related. Maybe i need to bring this topic up before they start poking... [ more ]
Scott F Some doctors seem to go overboard to avoid long-term antibiotic use. I’d rather not be on long-term antibiotic, but for me it’s better than the alternative. If your stricture symptoms are relieved by metronidazole then it’s probably caused by pouchitis-inflamed tissue rather than something like scar tissue. If it’s inflammation then 1) the dilation may not work very well, and 2) the inflammation still has to be controlled. What’s their long-term plan for controlling the pouchitis? How long... [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Small Bowel Obstruction
GaylaGayla
Sara Marie Aha, I may have found it. Is it the survey? https://www.j-pouch.org/survey...8#695026203006853238 [ more ]
Sara Marie Kim, what is the link to the current discussion about preventative measures for obstructions? I can't find the thread....but I am so interested in this topic. [ more ]
KimJ Agree with Scott 100%. There is another group discussion happening on what to do if you feel a blockage coming on that you might want to read thru for ideas before it gets so bad hospitalization is needed. Having had my J-pouch since 1992 - omg I can't believe it has been that long and I am now in my 50's! I definitely am in tune with my digestive system and can feel where things typically get stuck - and have a plan when/if I feel an obstruction on the way. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
New Chron’s diagnosis; would love input on treatment
lholdemlholdem
Scott F I’ve been successful with just antibiotics for about 14 years. OTOH they never did manage to pin down a clear Crohn’s diagnosis for me and just left it “indeterminate.” Antibiotic efficacy seems to be quite variable, perhaps reflecting vastly different microbiomes between people. Augmentin never did the trick for me, but YMMV. [ more ]
lholdem Hi Scott, thanks for the reply. I see your diagnosis is Chron’s. Have you had to treat that separately from the pouchitis or just been able to manage with antibiotics alone? I will do biologics if I really have to. I think I’m grappling with the reality of long-term ramifications of that. I did a short stint with them prior to surgery, and while it helped the inflammation I had a lot of side effects. I will ask about doing a longer regiment of antibiotics, maybe at least until we do the next... [ more ]
Scott F If the single round of antibiotics (2 weeks?) doesn't do a lasting job, the options for long-term continuous treatment seem like antibiotics or biologics. Both have pros and cons. If it's truly Crohn's then the biologics are more likely to work well, but if you feel strongly about avoiding biologics then you might ask about trying an extended course of some months of Cipro to see if that clears up the ulcers and inflammation (at least while you're taking it). [ more ]
See all 3 replies...
J-Pouch ForumsPouchitis
Anyone heard of this?
E eRoxanne
Sara Marie I looked it up because I hadn't heard of it either. It looks legit, but I wonder about their formulations. One size does not fit all. If it's not expensive, it doesn't seem like it would hurt to try it. I would also look for more information that they give to help empower you to find what each of the ingredients do, where to get them, etc., so you could try items one at a time. There may be one or two ingredients that aren't right for you but if you aren't able isolate them and stop the... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Awesome bidet
DeDe
De Here is the info from Amazon. Both items came to $58.xx. The bumpers help keep the toilet seat level because of the added bulk under the toilet seat on the bolts. LUXE Bidet Neo 185 (Elite) Non-Electric Bidet Toilet Attachment w/ Self-cleaning Dual Nozzle and Easy Water Pressure Adjustment for Sanitary and Feminine Wash (White and White) FOOFOO Bidet Toilet Seat Bumper for Bidet Attachment with Strong Adhesive White 4PACK Please tell me how you like if you get it or any other one. [ more ]
De I bought the Luxe a few months ago and posted a note. I love it, so much less soreness from not having to wipe as much. As well as cleanliness. Wish I had had it when the pouch was new and BMs burned and felt like glass coming out ! It is so easy to install. I only have cold water but it not freezing (maybe because it is sitting in the pipes). Everyone would/could be so much better with it. [ more ]
CTB23 ❤️
See all 13 replies...
J-Pouch ForumsPouchitis
Help with chronic Pouchitis
Shelly MarieShelly Marie
Sephy I’ve essentially had chronic pouchitis for much of my jpouch time (2003). Metronidazole (aka flagyl) has always helped quite quickly (in 1-2 days) but now that it’s 20 years later and pouchitis has 5 or 6 + times a year over that time, I’ve become resistant to it. I don’t tolerate cipro, never really did, and refuse to take humira again as it gave me full body psoriasis so I obviously went off of it, (and I’d also prefer to stay off the biologics given the whole point of the darn JPouch was... [ more ]
doogles10223 I have had chronic pouchitis for a year or two now. I had my initial surgeries when I was 16 back in 1998 and 1999, and had many years with no pouchitis, then had it periodically and now recently it has become chronic. After Cipro and Enticort we moved to Humira and that worked for a short time but then I developed reactions to it (skin rashes) and it seemed to stop working, and we moved to Stelara, which I am on now. I have seen some improvement but it is very slow. I would like to talk to... [ more ]
CTBarrister I have had my J Pouch 30 years and have battled pouchitis for 27 of those years. Rotating antibiotics continuously for 20 years, Remicade the last 7. Remicade definitely improved my inflammation significantly except at the problematic J Pouch inlet. The inlet is a significant problem area for long term J Pouches due to backsplash stool and pooling of stool above the inlet, this because of no backsplash valve as with a colon. I got strictured at the pouch inlet the last 5 years which... [ more ]
See all 4 replies...
J-Pouch ForumsK-Pouch Korner
Lomotil
Kara FredKara Fred
Pouchomarx Dr Dietz is my surgeon now if i ever need anything, he was trained under Remzi and when Remzi left Cleveland for NYC, he told me to only see him. Hes at University Hospital right down the street from Cleveland Clinic. [ more ]
skn69 You need to join the group because it is a closed group...so, join first and then you can ask...there are a lot of people on it who know him...you should get some good info and advice... [ more ]
sldrx Sharon, Thanks for the suggestion. What I need is information from K-pouchers Dr David Dietz has treated. I did not see a way to do a search on Poucherlifestyle's posts on Facebook for info on Dr Dietz. I do not want to become a member of the Facebook group, but maybe you know a way to search their posts...? [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
For those that experience some random leakage....sex question
PouchomarxPouchomarx
CTBarrister Poucho- These are intended for a different use but perhaps are worth a try: https://spectrumboutique.com/s...abq81dxoCCoQQAvD_BwE I think a couple of these are not visible when inserted but again, don't know, it's thrown out there FWIW. [ more ]
CTBarrister What I am saying is do whatever you need to do so that you are comfortable that this issue will not happen. But it seems to me that the gauze can be folded up to fit the contours of your rectum and then inserted. It would seemingly act as a better "dam", if you will, than cotton balls. There are also butt plugs available as sex toys at sex shops. Never used them so just throwing it out there FWIW [ more ]
Pouchomarx I had my first pouch in 2008 and my redo in 2016, I have never tried lomotil. I have definitely heard of it but imodium always seemed to work for me but not sure if its as effective any longer. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Pouchitis
A Alaine
Alaine Happily not. [ more ]
Sara Marie Thank you so much for your description, and yikes! That sounds horrible and I'm so sorry! I guess I have only had more mild forms of inflammation in that area. I have had partial bowel obstructions and those are really awful and painful. Are you in the hospital now? [ more ]
Alaine J pouch pain, bloating, weight loss. I became dehydrated I hadn’t been able to eat for four days and was hospitalized. Trouble emptying my pouch, sensation of a band squeezing my pouch painfully for hours. I just feel lousy. I’ll see what my scan with barium contrast says. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Antibiotics + antibiotics
A AMB
Scott F I’ve been on Cipro since about 2008-2009. I experimented with the dose to minimize it, settling on 500 mg once per day at bedtime. It began to lose effectiveness for me about 7 years ago, and I added Flagyl: the combination is still working well. Rifaximin alone never worked for me, but I haven’t tried it in combination. As a precaution I did get an abdominal ultrasound a couple of years ago, to make sure the Cipro hadn’t affected my aorta. I probably do get more tendinitis than I would... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
J pouch question
A Alaine
Alaine I’m getting a cat scan with contrast Tuesday, meanwhile I’ve been in a lot of pain. [ more ]
Kushami I have an answer as to what it might mean, but I don’t want to give it straight out because I’m not a doctor and don’t want to alarm you unnecessarily. Did your surgeon/specialist have anything to say? Do you have an appointment booked? I believe there are several causes for a pouch to be distended, some worrying and others that can be treated or will resolve by themselves. [ more ]
See all 2 replies...
J-Pouch ForumsMen's Health
Diet/Supplements
B BrianBril
Santosh I have lost my weight approx 8-10 kg from last six months. Why this is happening I don't know guys. [ more ]
Santosh Thanks. Recently I have checked the blood sample of HB and B12 both are normal. But i fell very ill and weakness. If I am taking iron supplement on mouth then stomach is upset so i have decided to take through IV. Psyllium is working well for me. Please suggest if any good advice. [ more ]
Al P The psyllium fiber bulks the stool up for me. I think I was losing weight due to the watery diarrhea that I was incurring. [ more ]
See all 14 replies...
J-Pouch ForumsPouchitis
Solving pouchitis!
FM Former Member
FelixGust To be honest I can't really remember Sarah. I suspect each different product has suggestions on daily quantities on the packaging and then I blended them all together and those kinds of quantities [ more ]
Sara Marie So I guess you mostly just experimented with the individual herbs, determined whether they were helpful and how much was right for you, then added them all together in your own special blend? [ more ]
Furious Pouch ❤️
See all 33 replies...
J-Pouch ForumsGeneral Discussion
24 hour urine
S Susan33
Scott F If your urine output is too low then it’s important to figure out a way to get better hydrated. Your kidneys (and other organs) will be grateful. A 24-hour urine needs *all* of your urine for the time period. [ more ]
Bubba1028 Yep. I did the 24 urine test and there was barely anything to bring to them. It was also like the best of summer when I did it and I was in the process of moving into our new house so we were busy packing so it was a super busy time. I think I put out like 300-400 ccs or something like that. It’s also hard to collect, as a female, bc every time I sit to pee, I basically have to poop too, and my stool comes out first, so it’s hard not to catch both at the same time. Good luck to you with that... [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Early Pouchitis
A Abdulaziz
Scott F Your situation is fine. In all likelihood the 2 weeks of Flagyl will clear it up. There’s no reason at this point to worry about more than that. [ more ]
New577 Hi, i can relate my situation, as it was similar to yours. I had takedown 1 year ago. Several months later, in summer 2021 I started having what I thought was pouchitis symptoms. Surgeon said impossible, but GI said possible but unknown until pouchoscopy could be performed. I had similar calprotectin numbers. We tried cipro for two 2 week intervals. I thought it helped. As it turned out pouchoscopy revealed cuffitis and other tests revealed SIBO. others will post here with more experience... [ more ]
See all 2 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Constant queefing (vaginal gas)
A Annabel
elliepouch There are some specialists at Stanford who are pretty good and knowledgable about dealing with pouches. I realize it could be very far for many but I have been IMPRESSED with the care there, not on this issue specifically, but just the living with it part. They were totally unfazed by my pregnancy. [ more ]
Gutless Wondergirl Thank you so much for sharing and most of all hope. It's good to know things may heal and don't have to go haywire. And management of foods, hydration and fiber may help too. And if things go south I will definitely ask about the glue. I would be happy to never have surgery on my body again. it's so true, they are good at taking our diseased part out, but the after care is certainly lacking. My surgeon was awesome, but I've moved far away from him. It's impossible to find a good GI... [ more ]
Former Member ❤️
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Microscopic colitis
K Kushami
Kushami Hmm, that is very interesting to hear. I am sorry you had such a hard time but am glad you were able to work out what was causing the problem and stop taking the medication. Just heard back from my specialist and got the okay to stop one of the two possible culprit medications. It has definitely been giving me nightmares and exhausting stress dreams, so I needed to stop it anyway. Will see if my diarrhea and cramps go away as well. [ more ]
New577 Hello, having been diagnosed with cuffitis last October, I can relate to exactly your experience. I restarted a medication after the pouchoscopy unrelated to my pouch. I had a month of absolute hell with cramps, diarrhea and horrible butt burn. when I stopped that medication my awful symptoms alleviated. When I restarted it one month later, symptoms returned, so I discontinued that drug permanently. I (and am assuming we) have to be very careful introducing new drugs and be on the lookout... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Here We Go... Again
ElmerFuddElmerFudd
Kushami ❤️
ElmerFudd Update : so my kid's on Balsalazide and Omeprazole for the inflammation, and she says the bleeding has stopped (yay!). Her multi-disciplinary appt with the Children's hospital is Wed morning to report on things. She's seen a rheumy about joint and leg pain, but does not have arthritis issues at this point (she plays soccer and seems more like a sports medicine issue). Overall, she's doing well with things. [ more ]
ElmerFudd Yeah - not sure how both my kids ended up with it, given the odds. I suppose even though there is no known IBD on my wife's side of the family, perhaps our genetics together upped the odds. Sad for my girls, but my 19 year-old is doing great with her j-pouch. The biggest med issue is... 1.2 g Lialda pills... totally freaked out my daughter. And come to find out that while I always thought she did fine with pills (has taken Benadryl and Singulair), she actually has a fear of swallowing pills... [ more ]
See all 20 replies...
J-Pouch ForumsPouchitis
Pouchitis or Prolapse...or both?
O OscarThePouch
Scott F I believe a full-thickness prolapse can be treated by better securing the pouch into the pelvis. I don’t know the various ways a mucosal prolapse can be treated - perhaps a mucosectomy is one? [ more ]
scallop ok - so here is my saga. I had my pouch re-done in 2001 by the great Victor Fazio at the Cleveland Clinic. Dr. Shen was my g.i. doc there. My pouch has never functioned well and I have ALWAYS had trouble. emptying. If I remember correctly, Dr. Fazio's nurse told me that the pouch does not have peristalsis and therefore cannot empty as easily as a colon. In any case, when I saw Dr. Shen in 2013 in Cleveland the manometry showed that I had paradoxical contractions (for the first time). He... [ more ]
OscarThePouch Ah thank you! Good to know that pouchitis can be a primary cause of this. I have antibiotic dependent pouchitis like you do. I take Flagyl. Things get complicated from here because I want to get pregnant. That is of course a separate topic. =) I just had a scope, so probably they'd have told me if it was a stricture or hemorrhoids. My stool might also be too hard which happens when I eat too many meals containing meat and cheese in a row. Pelvic floor dysfunction seems possible. Okay, this... [ more ]
See all 7 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.
×