Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsGeneral Discussion
Opinions on VSL#3
HeatherF21HeatherF21
Paul H Gives me terrible gas, have tried it several times with same problems, even lowering the dose. Here in Spain available as Vivomixx, exactly the same as vsl3. Worth trying though. [ more ]
lablover VSL is no longer available here. DH uses Viasome (sp?). He finds in better than VSL#3. [ more ]
HeatherF21 Thanks Scott, looking forward to tying it. I’m in the UK and VSL is available in pharmacies & online here without problems. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
butt release tunnel valve 🙄
K kay
Winterberry Kay, the "shrinkage" sounds like a stricture. This is when some part of your exit is narrowed, and can cause bowel movements to be thin (like a pencil) or very difficult to push out. Don't push because you might cause hemmoroids or more fissures (the feeling of razor blades!). If you can get an appointment with your surgeon or GI, they can stretch your stricture, if that is what you have. Use a bidet bottle, as Scott suggested, after every BM, and no wiping with dry toilet paper. A bidet... [ more ]
Scott F Kay, the sensation of “crapping razors” is often a sign of an anal fissure. If that’s what you’ve got it can be treated with cream/ointment containing nitroglycerin, nifedipine, or diltiazem. You can also try cleaning yourself with a spray bottle or bidet instead of toilet paper, and soaking in warm water (a sitz bath) might also help. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
PSA test results and jpouch
ItsanewworldItsanewworld
Catinthehat Pouchomarx, I just had my appt. with Urologist. I'd had a urinary blockage after surgery a year ago, but things are looking good now. I told him I didn't want to do the digital exam now because I want to get more info from Dr. Shen. My Urologist was ok with that. (I've had an abscess in my j-pouch that Dr. Shen repaired endoscopically and don't want to do anything to cause damage in there.) [ more ]
Pouchomarx I had a followup with him and it was just a random question I had asked him about how prostate exams are done with a jpouch.. He just said to do a PSA test. I am 48 so I am getting to that age [ more ]
Catinthehat I'm glad I saw this post. I'm supposed to have a prostate exam this week. Did Dr. Shen give a reason why? My psa is good for my age (73) at 3.08. Also interesting that he is moving to NY. He may have saved my life (but that's another story). [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Cannabis/ CBD with a J-Pouch
Maria410Maria410
Mary O I have a lot of scar tissue and it has become “sticky”. The scar tissue sticks to my abdominal wall, particularly around the rib cage. In most people, everything in your abdomen sits in harmony and fluidly moves around. If one has an organ removed, the natural order of things is out of whack. I’ve had four abdominal surgeries related to my J pouch and a hysterectomy. The adhesions stick to things, which creates pulling. The physio attempts to make things less “sticky”. [ more ]
juanaton hi Mary O. Thanks for your reply. No. I have not done, nor considered, PT for my abdomen. Why did you do PT? Were you having stomach pain similar to what I described? [ more ]
Mary O Juanaton, have you tried to find a physical therapy that specialises in dealing with scar tissue in the abdomen? I’ve been seeing someone that has worked wonders for me in various parts of my abdomen, including near my rib cage. By no means has it cured all of my many problems, but it has helped a lot. I’m in London but I know she trained in Canada. Also, I will be moving to Chicago soon and plan to look into CBD once there. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Calling anyone who follows Bo Shen diet suggestion
N NJK
winter wish Hi I recently bought a chapter in his book https://www.sciencedirect.com/...B9780128094020000277 Bo Shen recommends a low carbohydrate, low fibre and high protein diet similar to Atkins(as per book). The way the pouch is formed predisposes us to SIBO so low carbohydrate helps this. He also stressed the importance of keeping hydrated. [ more ]
SWG Hi Vanessavy! I’d like to read the thread but am not having much luck finding it. Could you provide the link? Thanks!!! [ more ]
liz11 Shen actually did tell me specifically to try FODMAP. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Nuval valve
J JanW2
skn69 Oh Janice, I feel so bad, even though it did not work for me, I always kinda hope that it will work for others. I am so sorry that you are back on the merry-go-round and that things have not improved...we have got to find a better way to fix things...too many complications, not enough solutions other than surgery. At one point hubby was trying to figure something out but in the end, it just didn't work...and he gave up...we need an engineer to marry a pouch surgeon and have continent pouch... [ more ]
JanW2 Hi Sharon, Thank you for checking. Things did not go well though, I only kept the NuVal in a week. After a day and a half it was leaking stool constantly and the pressure was so intense when I would go to empty it would just explode out!. I had to keep pushing it in and it was quite painful for me to sit up and even walk to the bathroom. I was nauseous and had diarrhea the entire time, quite unusual for me as I suffer from chronic constipation . They just thought the gas build up was so... [ more ]
skn69 HI Jan, How is it going? Did you get it done? I had mine sent to me and placed by a stoma nurse in 2008...not the best results in my case, mostly because I had a peristomal hernia so it would not stay in. But if your problem is different you can live with it for years...I know of a few people that have kept the same one in place for over 2 yrs. Good luck and keep us posted. Sharon [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Lifespan of pouch
descartes101descartes101
skn69 I've had my K pouch for 40 Yrs this summer...still the same pouch...it is made out of your intestines, no artificial materials so it should age normally like the rest or you or even better for some. Hernias are an occurrence that can happen for a lot of reason, inborn muscle defect or weakness, overexertion during exercise or lifting of something heavy or due to age and the thinning of your muscles. As a woman, I started getting them after age 45. I got about 8, one after the other and then... [ more ]
Mary O I’ve had a j pouch for nearly 25 years. My brother has a pouch (before the J pouch was invented, but it’s basically the same thing) that is 53 years old. Both of our pouches are healthy. [ more ]
Accept It Ive had my J pouch for 34 years with minimal complications. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
hemp oil or CBD oil for pain and inflammation ??
PouchomarxPouchomarx
K_InTheFlo So why did you start taking Charlotte's Web? How do you feel it has helped you? Thank you! I'm looking into it for myself! -Karen [ more ]
TinCan I should add that when using the tincture, the dose should be placed under the tongue for more effective absorption of the CBD. [ more ]
TE Marie I selected the company I purchased it from after reviewing different companies as best I could and it isn't easy. I agree with Tincan. So don't take the information I furnished as a recommendation. I did my homework but didn't feel any benefit from the product I purchased. [ more ]
See all 15 replies...
J-Pouch ForumsGeneral Discussion
Potassium Supplementation?
SpookySpooky
Aimc Correction: salt stick caps 10 and salt stick plus 15. [ more ]
Aimc According to there site, you can take between 10-15 a day. Depending on physical activity. [ more ]
BlueFlame Follow up: Have decided San Pelligrino isn't a regular option due to the bubbles; however, it did seem to quickly resolve leg/foot cramps and very dry lips. I've started with SaltStick caps instead and that seems to do the trick, as well. Hard to say, but seems I do not need to drink quite as much water to stay hydrated. It's nice that it's very portable, as well. Aside from taking during exercise, I'm really not sure how many/frequently to take the SaltStick caps for our pouch purposes. I'm... [ more ]
See all 16 replies...
J-Pouch ForumsGeneral Discussion
J-pouch help..
D Dawnoo
lablover My DH wears Ultra thin pads (overnight) with wings at night. Helps alot [ more ]
Aimc Dawnoo, in the mean time, maybe take some fiber before or after each meal. I take 2 lomotil and 2 Imodium before bed. Try emptying your pouch before bed. You could also ear a small thickening snack before bed also, like a couple of peanut butter crackers or just a bit of peanut butter without crackers. I kind of sounds like you have pouchitis though. If you can't get into a GI fairly soon, maybe your surgeon could give you an antibiotic. Good luck with it all. Keep us informed. Aimee [ more ]
Dawnoo Thanks ..believe I will find a new GI. I had that in my thought process.. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Ok Humira, here we go......
B BlueFlame
BlueFlame So glad you have a good response to treatment. It's things like this that make me doubt if I should skip Imuran and go straight to biologics. What did your scopes look like prior to and after Imuran treatment? Did you/do you have ulcers and chronic inflammation? [ more ]
JJA My pouchitis was only controlled on antibiotics and Budesonide-whenever I tried to wean the budesinide pouchitis returned. I never tried immuran or 6MP or biologically because bios didn’t exist and 6MP was brand new and my colon was giving out on max prednisone and I had to have pouch surgery immediately, in 1991. My GI offered immuran or immuran plus Humira or remicade. I opted for immuran only (plus rotating antibiotics) as a first step because I didn’t want to be hooked on biologics... [ more ]
Scott F It’s worth remembering that the insurance company does not have your best interests at heart. What they propose isn’t awful, but neither is it the best approach medically. It’s just the least expensive. [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Improving QOL and pouch function with intermittent fasting?
S slouchypouch
Cassandra I have the same problem with water. It just runs right through me and takes anything I have eaten along with it. Sometimes with leakage. Drinking water just makes it too hard have any food in my pouch. I am totally open to the fasting idea (I've had pouch 26 years and been dehydrated all that time with several kidney stones passed and surgically removed.) The thing about the fasting idea is that I have been anorexic pretty much my whole life and would not even eat at all if I didn't have to. [ more ]
girlunky Glad to hear you are feeling better. My surgeon told me not to drink when I eat - leave time in-between. I guess you are wishing to lose weight, but at some point if you do not level out you will need to increase your calories. High density foods like nut butters can help you get calories without a lot of bulk. [ more ]
slouchypouch One more item. I'm tolerating medications while fasted without any issues. I still try to be tactical and take my meds during the eating window which isn't always possible. The 16/8 schedule (skip one meal) was ok but the 20/4 schedule utterly changed me quickly. I feel a lot better being fasted and able to drink water and hydrate. Previously drinking more water just makes me shit more water out. Water + food has always been a disaster for me. Food choices did improve that situation but... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Pain meds causing ileus
D DJJ2019
CTBarrister Opioid Pain meds also caused me to have a postsurgical ileus but only because I overused them. Muscling through the pain with Tylenol is one approach, and another is using minimal amounts of opioid pain meds. A postsurgical ileus really sucks, and the combination of the nausea, vomiting and NG Tube is much worse than dealing with the surgical pain. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
strange, itchy feeling inside the anal canal
A Alexamsterdam
Alexamsterdam Sorry It’s called Tormentavena. [ more ]
Alexamsterdam Hi Strange, Thx for your answer. I got ointment (diltiazem) from my surgeon and use it the same way you do. I have to say it helps. the internal itching is no longer constantly present. What a relief! now i can continue to learn how to live a normal life with a pouch. when I read the stories of others about all the problems which can occur I should not be dissatisfied. but if your life was turned upside down out of the blue last year, you can't help comparing your current situation with your... [ more ]
Former Member Yeah, its an anal fissure; it happens to me from time to time; I can even pin point a specific spot within. I assume we have folds, grooves, creases and contours up there and from time to time, little tears or abrasions occur, which are engulfed within the acidic output. What works for me, which sounds rather uncomfortable but isn’t; is the application of ilex protectant paste applied within; which I’ve been applying in such a manner, every now and then for quite a few years and, without... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Toilet paper recommendations?
M MCH
Winterberry I was in a Dollar store recently and saw the toilet paper they sell. It looks like a cheaper grade tissue, not too soft; a firm texture. You could probably use it to write a grocery list if you don't have notepaper! But it might be what you're looking for in a firmer tissue. Or, you could ask at the place where the public restroom is, and they might be able to tell you who supplies their facilities. [ more ]
Winterberry It might be possible for you to experience little to no burn, and use less toilet paper by using a bidet bottle to rinse first, then gently dab dry with any brand of toilet paper. No wiping required. I started off with a travel bidet bottle from Amazon, loved it so much and it healed my burning skin, I bought an attachment piece for the toilet so that water is "on tap" so to speak! I love my bidet. Cost around $100 or less. [ more ]
JJA Used to love cottonelle, but switched to charmin ultra. Also a big fan of wipes and an even bigger fan of my bidet!! [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Misdiagnosis
R rustyskyline
TMG My orig reply was commenting to someone’s shared thought; Not stirring up someone else’s emotions or asking for an debate. Every single person is different and we all make mistakes, even doctors. To criticize anyone on this forum for sharing their thoughts and emotions Is not necessary . Total colectomies have decreased due to better meds available “and” doctors are treating IBD differently due to new knowledge, education and research. - ctbarrister- at no time did I say total colectomies hv... [ more ]
CTBarrister I didn’t have local anesthesia. My surgeon told me my colon was dissolving when he removed it and I believed him. All the testing I had prior to that suggested the UC was no longer treatable- also had dyplasia and the inflammation was throughout the colon. This is not fiction, it is fact, and it’s offensive to suggest that my doctor would have made something up. Everything else I posted here was based on my history, my scopes and my knowledge of the disease process and the law. BTW my... [ more ]
rustyskyline CTBarrister, My doc told me I had ulcerative colitis and needed to have a colectomy or I would likely die. Turns out oops, he was wrong. I certainly wouldn't trust him if he told me a story about my colon dissolving before his very eyes upon removal. But kudos to you for undergoing your procedure under local anesthesia so you could see it for yourself. [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
Starting Entyvio
MB Mr bill
CTBarrister BTW I could be wrong, this seems to imply a standard dosage of Entyvio: https://www.entyviohcp.com/dosing 300 mg. My Remicade dosage is based on my weight. [ more ]
Mr bill Thanks to all responders! [ more ]
CTBarrister I believe the dosage of all biological drugs is based on your body weight. The lack of a colon has no relevance because the medicine doesn’t work on your intestines, it works on your immune system to suppress it. I know for fact that my dosage of Remicade is based on my weight and I believe it’s the same for Entyvio. Both drugs are infused by way of IV. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Help with Food - J-Pouch Dietitian?
S Spooked
tf I have J-pouch since 2015, diet and input is key. I said before that the FODMAP diet really works. There is no one diet and it is a mix of a few. Whatever works for you. Keeping track each day of what u eat and how much and what gives u pain, burning, gas, heartburn, etc. Then again in another week it could change. It is very complex. You will figure out soon enough what works for you. The dr's plainly tell that from the beginning. Eat what u can and doesn't bother u. Many suggestions out... [ more ]
CTBarrister I think when it comes to diets you need to experiment but the one I posted has science behind it unlike the others. Despite this there is a trial and error element as the impact of any diet varies with each individual. [ more ]
Spooked Thank you both. CTB23 - you sound like you're having similar problems to me, actually. Despite being overly conscious about my weight for most of my life, I find now that I'm *trying* to gain it, it's incredibly difficult. It's like the more food my body has to process, the worse it feels. CTBarrister - I've looked into this before, and maybe I should give it a try? My main problem with dietary guidelines is adherence. And with so many opinions floating around, I always end up doing 'parts'... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Pouch Endoscopy Results?
B BlueFlame
maddie18 Hi Has anyone had to take Pico salax before their pouchoscopy? [ more ]
BlueFlame Yes, cryptic distortion and ulcer in the pouch. Last year indicated the same; ulceration was new last year. However, multiple scopes last year and prior years indicated acute and/or chronic inflammation, cryptitis and surface erosion in pouch, afferent limb, efferent limb and transition zone; the current pathology does not state any of this. I understand the sticking point is presence of ulceration. I do not know at this point how the ulceration compares to last year. [ more ]
Scott F “Cryptic distortion” is disruption of microscopic structures in the gut wall called crypts. It’s less significant than cryptic atrophy. It’s not definitive evidence of Crohn’s, and I don’t know whether it might show up in pouchitis. Was the cryptic distortion in the pouch itself? I’ve never had nor needed a B12 shot. I do get my B12 tested occasionally, since we are at increased risk of B12 deficiency. [ more ]
See all 22 replies...
J-Pouch ForumsGeneral Discussion
Sore
E Emuhyee
Bbe That’s great for you. You may want to talk to your nurse about other patients you can talk to directly if ever you have questions that require immediate response. Everyone on this forum is awesome and have lives outside of this webpage so they try and stop by and try and answer some of us newbies questions as best they can their is no need to be rude with people who are only trying to help maybe the response didn’t come through fast enough for you but there is a search area on this sight... [ more ]
Emuhyee Yeah you are all too late with answers. I’m fine now. [ more ]
Winterberry Scott is right, it will take time, your body has been through a major ordeal, organs pushed aside, removed, and a new one constructed. This causes swelling, bruising, pain from everywhere whether you're sitting, standing, lying down. It took me several months (6?) before I could sit without pain shooting from my bottom into my abdomen, from fire burning BMs, constant issues everyday. I thought it would never end, until one day, out of the blue, it was so much better. My pouch learned to live... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
I can't sit
A Andreita
JJA They sell various coccyx cushions-I’ve used several different ones over the years-an oval donut shaped one as well as a square one with a wedge shape and a cat out near the back-can really help take the pressure off back there if/when you are sore. [ more ]
BlueFlame I can almost assure you, people are not looking at you funny because of how you sit. If they do, so what. You are healing. As the others have said, it will definitely take time.....and maybe a pillow, non-NSAID pain relievers, gentle skin care, etc. [ more ]
Andreita I really hope so. People are looking at me funny because I don't sit normal :/ [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Change in Pouch Function long term
HeatherF21HeatherF21
Spooky The suggestions above are all good ones. Definitely test for Celiac and rule out SIBO. I would add too that sometimes seemingly small things get overlooked; for example, if you have had any recent changes in diet or lifestyle, such as an increase/decrease in exercise, change in sleep schedule, change in times that you eat, etc? This can all impact pouch function. But if the scopes otherwise look fine and there is no active pouchitis or inflammation, looking at your diet is a good place to... [ more ]
CTBarrister You may have a SIBO situation if Cipro is working well. You claim your diet is good but you don’t comment on sugar consumption. Sugar consumption could be behind SIBO and frequency. Targeting gluten and probiotics is fine but getting rid of sugar in your diet is another step you can take. Sugar is a much bigger culprit than gluten in SIBO and frequency except for those with Celiac Disease. And if you don’t have Celiac Disease gluten isn’t or shouldn’t be a huge issue. If you haven’t tested... [ more ]
HeatherF21 Thanks guys, I’ve never taken any Imodium or bowel slowers since the op as haven’t needed to or been on any medication (except Cipro for a confirmed bout of pouchitis a while ago). All very weird but I know that Cipro works great to alleviate my symptoms regardless of what the scopes are saying...... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Cipro/Flagyl Rotation and Dairy
B BlueFlame
Jmarc My new GI highly advised I go on Cipro/Flagyl "rotation" after using only Flagyl for a few years (daily) for chronic pouchitis. It's efficacy was starting to wane anyhow, so I took his advice. Pouchitis always returns when stopping antibiotic. I switch off every 90 days.Cipro makes me feel a little better and it gives me slightly better control. No pouchitis for 1 1/2 years but 6-8 bm is still the norm [ more ]
kubrider Hi All, Personally I wouldn't get to excited with the reduced BM's just yet. These antibiotics are naturally constipating. I was just on the same two for 14 days with the same result but you'll find that as quickly as you slowed down when first taking them you'll more than likely speed up when taken off. Not that your pouchitis won't be cured but your system will speed back up. Best of luck, Rob [ more ]
BlueFlame I thought I’d have to take Cipro and flagyl for a month, but it’s going to be two months followed by an endoscopy to see how things look. Then maybe taper or change to Rifaximin depending on how things look. I feel no symptoms and felt done before the Rx, though I definitely feel better with the Rx. The Rx duration is getting to me though. No appetite, blurred vision, flat mood, tired easily. I started B12 shots last week so hopefully that helps some. I know this is a bit whiney given other... [ more ]
See all 15 replies...
J-Pouch ForumsGeneral Discussion
Turmeric capsules for help with pouchitis?
J Jmarc
roseviolet Thank you for your reply, JMarc. I'm not on any med other than potassium. Have zero symptoms, only 4 daily movements and feel great. Pouch just had its 27th birthday. On my last scope there was some ulceration at the inlet and some inflammation in the pouch. Have been taking curcumin & boswellia after reading several studies on NIH site. Am hoping these are helping but won't know till next scope. I certainly don't want to take biologics or other meds if I have no symptoms. [ more ]
Jmarc I've spoken with my GI since this posting 2 years ago. He wasn't familiar with anyone who has tried the turmeric but was fine with me trying it. I never went full speed ahead with it as I was a little nervous that discontinuing Flagyl would cause flare up. One daily capsule didn't seem to have much impact. For these past 2 years I have been on a rotating schedule of 90 days flagyl then 90 days Cipro. Been free of pouchitis the entire time. Overall sense of wellness has been good but I... [ more ]
Linguist ❤️
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Stitches around stoma
K Kh1988
girlunky Well all ileos are stitched into place. Otherwise they would retract. I had so many issues with my loop ileo, and yes, the stitches were one of them. I had issues with the stitches for my end ileo as well. I did very very gently test them and when they were mostly dissolved the offending ends easily fell off. The suture would get under the wafer and compromise the seal, then the leaking stool caused skin lesions around the stitch. I also had one that got a bit infected, but it drained when I... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
anal dilation for stricture
MO Mary O
Mary O Unfortuneately, I've been doing regular dilations for years and additionally have been in pelvic floor p/t for a number of years and don't make much progress. Even with all of that, it is gradually getting worse, hence why I am trying to understand what the options are for the future. [ more ]
Jfill21 Mary I had the same inability to empty and had same tests done at Cleveland Clinic. My diagnosis was a dysfunctional pelvic floor and the prescription was.therapy. Took some time getting comfortable with a therapist but glad I went through it for three months. Definitely helped. [ more ]
Scott F Mary, plenty of folks do fine with regular or occasional dilations. You’re probably not on the road to an ostomy as long as you keep the channel open wide enough. In the meantime you might want to do kegels every day so the sphincter muscle stays strong. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Remicade
C capper
Andreita What if you already have antibodies to it because you've been on it before to treat UC? Also will other biologicals work for inflammation in the J-pouch if they haven't worked for colitis? The reason why I'm asking is because I failed all treatments including the big biologicals. That's why I got the surgery in the first place. Would biologicals ever work again for the J-pouch? I always worry and wonder about this. [ more ]
CTBarrister I had sleeping issues before and after Remicade, with no real change in the magnitude of them. I come from a family of insomniacs. As far as a firming of the bowel movements I haven’t noticed that. I don’t think you will see improvements for around 2-3 months. You sound stressed out and looking for cause and effect reactions with Remicade. I would suggest you just relax, chill out and wait. For the sleep issues, NyQuil or the cheaper Walmart equivalent works well, you can also get a... [ more ]
missm Never had a problem with sleeplessness from Remicade. I always get a Benedryl with my infusion that that knocks me out. My husband has always averaged about 5 hours of sleep per night - he started taking 1/2 dose of melatonin (per our daughter who is a Registered Dietitian) and is sleeping much better. I've been on Remicade for 6 years, and didn't have any side effects for a long time. [ more ]
See all 23 replies...
J-Pouch ForumsGeneral Discussion
Extra Ostomy supplies
B BBOP
Winterberry Ask the ostomy nurse if there are organizations they know of that need products for ostomy patients who don't have insurance, or for low-income patients that cannot afford extras. My hospital even donated some of their extra supplies to another country where a new appliance or bag is a luxury, can you imagine. While I had a temporary stoma I ordered more than I needed from my insurance company because I changed appliances sometimes 3 times a day due to my retracted stoma. Luckily my reversal... [ more ]
Still Standing I donated mine to the hospital where I had my j pouch surgery. The ostomy nurses provide them to other people who need them. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Humira
ktakta
Still Standing I would make a note of how you felt after this injection and see if it happens again at the following one. If you don't feel better in a few days, I'd let your GI know and see what he/she thinks of all this. Hope you feel better soon! [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Rectal stump
G gdl900
Jlboling ❤️
Scott F There are two different surgical techniques that can be used. The more common stapled method attaches the J-pouch to a short rectal cuff. The technique is easier and usually gets better results, but the remaining cuff can cause trouble if it gets inflamed (cuffitis). The hand-sewn technique is technically more difficult, and should only be done by the most experience and skillful surgeons (IMO), but it removes that pesky rectal cuff. Sometimes a mucosectomy is performed at the same time,... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Low residue diets
M Marj
Bobish Marj, it's always best to learn from yourself rather than follow someone else's diet suggestions (even a doctor's) everyone is different and just because a food is tolerated by someone else didn't mean it will by you! I notice you have had a pouch for over 20 years so presumably you have some idea which foods upset you and which don't. Do you have a specific concern that's leading you to want to restrict your diet 95% of digestion occurs in the part of the digestive tract that we still have,... [ more ]
Francesca Hi Marj i haven’t had any food allergy testing but I know from personal experience that milk and ice cream don’t agree with my jpouche. Hence I steer clear of them. I also try and stick to a gluten free diet. Cooked vegetables are fine with me and I limit my fruit also. Other than that I’m fine. Regards francesca [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Kidney stones
B Bubba1028
Raj I only drink that much because I am supplementing creatine in my workouts which demands a lot of water even with a regular person. As for the acidity due to lemon , its infact alkaline once digested. The lemon water itself is acidic but once the body digests it , it acts as a alkaline.And you are right we loose more water than a regular person with colon. I've felt this during intense workout sessions. I constanly need to drink water . Atleast 3-4 times in my 1 hour workout. [ more ]
CTBarrister Kidney stones are a well known possible complication of a colectomy. You lessen the risk by properly hydrating, and not drinking excessive amounts of alcohol and caffeine. It is true that the small intestine never absorbs water as well as the colon did, but you can compensate for that by properly hydrating. In 27 years with J Pouch I never had kidney stones but my surgeon warned me about them and said if I didn’t drink a lot of fluids it could happen. He scared me straight into the proper... [ more ]
Janiep ❤️
See all 5 replies...
J-Pouch ForumsGeneral Discussion
J pouch and cancer
M missm
CTBarrister Here is the wiki on toxic megacolon. What I was referring to is the complication that your colon actually perforates and as a result, you die due to sepsis and shock. That’s what can happen when a colon deteriorates severely due to UC. https://en.m.wikipedia.org/wiki/Toxic_megacolon [ more ]
missm What exactly is toxic megacolon? My dr has mentioned it, but never explained [ more ]
CTBarrister I am also taking methotrexate and have gotten away with drinking on occasion with it. I am now on 7.5 mg weekly after my liver chemistries spiked a couple months ago and they reduced my dosage from 12.5 mg. I am now back to normal. My liver chemistries were fine on 12.5 for almost 4 years with occasional drinking but then suddenly crept up. My doctor told me 2 drinks a week but some weeks I have none and some weeks 4 or 5. I only have a maximum of one drinking day a week, and on that day I... [ more ]
See all 16 replies...
J-Pouch ForumsGeneral Discussion
Dr Recommendations for Nashville or Memphis area
V VickiJ
Dude, where's my colon? I used to be a patient at the digestive disease center at Vanderbilt Hospital in Nashville. I had great results with them. My doctor’s name was Dr. Dawn Beaulieu. She was very knowledgeable and helpful. She specializes in J-pouch patients. I highly recommend the Vanderbilt digestive disease center. I think it would be worth making an appointment to see if they can help your husband’s pouchitis before you schedule a surgery. Hope this helps [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Not gaining weight
A Andreita
Aimc Hi Andrina, I think you will be fine. 54 kg is around 119 lbs., I don't know your height, but that not a bad weight. As your j pouch matures, and you are eating proper meals, things will even out. Sounds like you are doing pretty good. Aimee [ more ]
Andreita During remission I was 65 kg. I flared and dropped to 55 kg. After the first surgery I came up to 60 kg again. After the second I have been declining and even worse after the third. I'm at 54 kg now. [ more ]
BlueFlame Agreed with the prior replies. Your surgery was so very recent. I’m guessing you were pretty ill and perhaps under weight going into the surgeries? By the time I had part one of the surgery I was 89lb, down from 110-115lb. The surgeon wouldn’t reconnect until my weight was at least 110. It was a tough road getting there and I ate high calories for three months because I was determined to get rid of the temporary ostomy ASAP. It definitely can take time to regain weight after all that. That... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Xifaxan + Florastor, now maybe VSL versus Visbiome?
B BlueFlame
CTBarrister I had my surgery done in 1992 by a different group of surgeons- Dr Irwin Gelernt (died in 1996) and Dr. Steven Gorfine, who at this point might be semi retired. That group is now known as Manhattan Surgical Associates and was known under another name in 1992. Mount Sinai in NYC probably did more J pouches in the 5 years from 1987-1992 than any hospital in the world. They were the only place any GI doc in the northeastern USA would send you at that time. Things have changed and now for... [ more ]
BlueFlame Thanks, Scott. A bit perturbed I’ve been taking Florastor without this understanding.....and really not more than a supposition by the doctor’s office that it likely provides some benefit. I’m fighting a battle here, not looking to waive a feather at it and cross my fingers! Truth is, they just don’t know. And I get that. I just wish we weren’t the ones who are one step ahead because we read and research. [ more ]
BlueFlame Agreed, mostly. A huge problem is there are few answers, partly the nature of the beast. I had my pouch surgery at Mt. Sinai about 30 years ago....Drs. Greenberg and Hyman. Are you familiar with them? [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Stoma skin irritation and take down in two weeks!
J Jpouchinseattle
Roni* Will pray for good news for you. [ more ]
Jpouchinseattle Hello Roni, thank you for the reply. My issue is that the new stoma discharges from inside my skin. So it is like a small bowl. It’s hard to keep a bag on and irritates my skin, so badly that I have to constantly be treating it in order for it to heal. I have to say that it is much better than a few weeks back where there was much more blood and much more pain. It has slowed down, but I am currently working on controlling output and also trying to stay out of dehydration mode. Easier said... [ more ]
Roni* Is your stoma retracting behind the bag by any chance? Because if that's what is causing the leaks I may be able to help you. My stoma was too short to go all the way into the bag. So when it retracted, the stool leaked behind the bag. You can imagine what all that acid does to the adhesive on the bag and your skin! Ouch! I was able to solve the problem somewhat, but still had too much output, so constantly dehydrated and in the hospital for iv fluids. They tested my pouch just after 2... [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
How deep does an NG tube go?
A Andreita
skn69 All I can add is that certain surgeons place the equivalent of an NG tube directly through a hole in the upper abdomen during surgery (for post-op comfort for the patient)...I had mine when they created my k pouch and it was not removed until I was discharged 31 days later. That was the only surgeon that I have ever had who did it that way (although I have heard that Dr R at Palms who does the BCIR does that too)...But that is during pouch creation surgery. For the ileus or blockage it is... [ more ]
Michael Just finished a pleasant five day stay at NY Presbyterian with a combination stricture / small bowel obstruction. Admitted Sunday after J-pouch decided to cease operations for 36 hours. Bilious vomiting Sunday night with an NG tube placed post haste to alleviate the constant gastric back pressure as described above. Successful procedure on Wednesday to dilate the stricture and use a balloon to clear the 'kink' causing the SBO. While placing the NG, and I could well be wrong, but recall the... [ more ]
Andreita Thank you so much for explaining. Yes I've seen my dad do the gasoline thing I thought it was weird and gross but it worked haha [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Take down in a week, what does life after the stoma take down look like?
J Jpouchinseattle
Andreita I was 7 and a half weeks. Close to 8. Pooping mucus from the not yet connected J-pouch happened to me and it's normal. [ more ]
Bobish Discharge is normal, it's actually even a good sign, it means you still have regenerating bacteria in your gut. If you bathe your butt with warm water you it will pour out of you until empty.. useful just before bed etc. When I had my takedown the top advice was to walk, as soon as you could for as much as you could to get the bowel working. It's still good advice [ more ]
girlunky My doc said discharge from anus is normal. Even with little spots of blood. Sometimes I had none, sometimes a couple times a day. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
JPouch and Keto
L LisaRam
Emmyschmemmy Are you still doing Keto? I just started it last week and haven't experienced runny BMs, but the opposite. I find that the amount of cheese I'm eating is making everything too bulky and I'm having to strain on the toilet. I also can't resist eating the roasted salted mixed nuts that my husband buys, but they're terrible for my pouch and now I have a bad hemorrhoid. I've read that it's popular to pair intermittent fasting with Keto. Have you done any research into that? I wonder how a j-pouch... [ more ]
Raj I've been on ketogenic diet for quite some time. And it has been my go to diet while I try to cut and loose body fat. I havent met any dietician post takedown for a new plan. Earlier I would drink lots of milk/yoghurt, hard boiled eggs 2 serves, nut butters (almond/peanut), healthy oils (olive/coconut), meat (all kinds), cheese, butter, cream etc. I dont supplement much except for zinc, and vitamin C and 1-2 multivitam tablets. For potassium I just drink coconut water almost eveyday on keto... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Envitrio
Linda2Linda2
Linda2 Thanks so much....that gives me hope! [ more ]
CTBarrister I am on Remicade - another biological drug that is infused. It takes a period of months for these drugs to clear up chronic inflammation. It shows up in scopes after 6 months. Don’t expect instant changes. [ more ]
Linda2 Thanks for your reply. We shall see how things go I guess. Not having any pain so that’s a good sign! [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
If minor leakage now at 48, what will 65 look like ??
PouchomarxPouchomarx
Aimc Hi Patricia, I too have a stricture that was causing incomplete emptying and leakage. I had two balloon dilations under sedation done by my GI doctor. They couldn't get beyond 10 mm with that procedure. I've most recently had a dilation with a Hegar dilators, done by my surgeon. He got to 16 mm, which is a normal range. I also use these dilators at home. This procedure has helped me greatly to get much better function of my pouch. CT is right about the things that could go wrong. Talk with... [ more ]
PATRIZIA Thank you for the important points you made and i will let you and all know as soon as it has happen. I will find out in the meantime if the surgeon has to touch the anal sphincter or not, hope not. [ more ]
CTBarrister I would ask him if any surgery will touch the anal sphincter or not. That particular area is a tough one to surgery. I had a skin tag on my anus and was referred to a colorectal surgeon at Yale and he explained to me surgery wasn’t necessary and was very risky for something that’s really more a cosmetic type of issue than a functional issue. I didn’t know what the skin tag was, but it’s just a benign growth that does not interfere with defecation or cause leakage. I wish you good luck! Let... [ more ]
See all 13 replies...

Join Us!

Founder, Creative Director & Web Master

William J. Johnson
bjohnson@j-pouch.org

Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

Forum moderator and advisor
Jan Dollar R.N.

 

 

 

 

General Disclaimer

 

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


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

Confidentiality

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

 

CCFA

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


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

 

Join Now

Already a member? Sign In

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.
×