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J-Pouch ForumsHelp! Need advice now!
Bleeding with BM
Amanda74Amanda74
Amanda74 Thanks for the advice Scott, I've reached out to the UK for their advice and recommendations and an appointment hopefully for when I get back to the UK. I do have low blood pressure and have been anemic a few times over the duration of having colitis and don't really fare very well with iron infusions so they tend to stay clear of them. [ more ]
Scott F SInce the fainting episode happened 2 weeks before *any* signs of bleeding they may well be unrelated. Fainting is a pretty big deal, particularly because of the body parts that sometimes get broken on impact. Bleeding itself is mostly just a nuisance unless the volume or persistence causes anemia - have you been anemic in the past? Had a reasonably recent blood count? The underlying cause of the bleeding matters, of course, but it probably doesn't matter enough to try to figure it out... [ more ]
Amanda74 ❤️
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J-Pouch ForumsHelp! Need advice now!
Suturable bioprosthetic plug for fistula - anyone have any experience?
CA Cait Again
Rupert Bear Hi all, any advice would be greatly appreciated!! i was informed last week I was missed diagnosed with UC 9 years ago. I have had a j pouch for over 6 years. Got pouchitous under control after a few years with. Prednisone 2 mg foam enimas. Everything seemed great until 6 weeks ago I had a seton put in a fistula abscess. Last week my specialist informed me it now appears I have Crohn's!! Whilst informing me I need another abscess drained. This requires daily dressing as the hole is 30mm deep... [ more ]
Jeffsmom Ok folks! I have experience with this! My son had a biological plug done last September 2016. It is not a common procedure. It was done at Weill Cornell in NYC. He was only the 13th patient at that facility to have this done. It was done by Interventional Radiology. He had a fistulia in his small intestine, just at or above the stitching line of his pouch. I did not remember who the company was that makes these plugs but they are custome made for the patient. There is about a 60% success... [ more ]
Unholy Poet Hi Cait There is no easy answer to your question, I'm afraid. And as a non-driver I'm not the best person to answer it either. Some people have great problems with Setons, others won't have any issues at all. Some heal quickly, some don't heal at all. There are two kinds of Seton too, the normal type and a Cutting Seton. My first Seton fell out within a couple of weeks. My second was far too tight and was cutting into my butt cheek quite severely to the point where I could hardly walk and... [ more ]
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J-Pouch ForumsPouchitis
Ischemic Pouchitis? Too many symptoms, Ideas Please
RinaJPRinaJP
Sonja6 I know this sounds crazy but I felt the best when I did some pretty intense acupuncture and Chinese herbs. I saw a guy in the states that was trained in China and most of the herbs I took he had to have shipped in just for me. The cost here was insane so I just couldn't keep it up. You may have better luck in Japan though. It's worth a try if you already don't have insurance. [ more ]
RinaJP Hi Jan. I think my doctor is doing a "shot in the dark" approach. He has discussed my case many times with another doctor who specializes in IBD, and they both have come to the conclusion that my ulcers are not from an auto-immune response. I'm sorry I failed to mention that last post as it came to me after I posted it (and a mass jumble of language of trying to translate in between languages). I think that is the reason why he threw out biologics. He believes that it has more to do with the... [ more ]
Jan Dollar Looks like the study showed a modest response compared to placebo, but long term the relapse rate was similar to placebo. It is noted that it was specific treatment for F. varium bacteria. Did you have an antibody titer run for that bacteria, or is your doc using the "shot in the dark" approach? Nothing wrong with that, but just less likely to be effective. Another thing to consider if this does not work, is a short course of prednisone. Since Pentasa was effective in dealing with the... [ more ]
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J-Pouch ForumsGeneral Discussion
Nutrition Supplements for "Leaky Gut SYndrome"
J moonsJ moons
Jan Dollar The article you posted is quite good. Thank you for taking the time to find an unbiased journal review, as opposed to a website trying to sell a product. What is clear is that there is yet an enormous amount of information to learn. There may well be something to this leaky gut thing, but it is more complex than you can imagine. My point? As Scott pointed out, just because you may have food sensitivities, it does not mean you definitely have this syndrome. Also, it is not an accepted fact... [ more ]
Scott F Was that other doctor the naturopathic chiropractor, or someone else? The way lab test abnormal values are determined in most cases makes it important that the tests be done only when there's a reason to suspect that something might be wrong. Otherwise, false positives are very common. In selected circumstances lab values provide important information even without a prior concern, but even then they don't usually stand on their own, particularly with a disease that's still murky. Whatever... [ more ]
J moons Do you agree with the other doctor's assessment that I have leaky gut based on those blood work results I posted above? [ more ]
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J-Pouch ForumsGeneral Discussion
1 week post take down problems
MochiMochi
CTB23 I often wonder if my butt burn was bad in the beginning because I was also dilated during my takedown surgery. I have follow up tomorrow prior to scheduling my first pouchoscopy. I don't usually track my bm's but figured I would for the last week, in case my surgeon asks. The most I went was 5 times and the least was 3. Today, I was on the road so I took Lomotil before leaving the house. I stopped at home in between to pee around 2:30 and drove to my last appointment for the day; didn't need... [ more ]
Former Member I have 3 to 4 BMs per day, some days only 2, in fact, I very rarely have less than 2 BM per day and rarely more than 5. I can go for a good few hours in between BMs and if I have to, I can hold out for maybe a hour when I feel the need to go. My BM frequency has been much the same since takedown surgery. Prior to surgery my surgeon said I should expect 5 to may be 7 or 8 BMs per day and 4 to 5 BMs per day would be the best outcome. Since, takedown, I've never had stomach cramps or passed... [ more ]
Mochi I have yet to read of anyone that only goes 3-4 times a day. I am pretty small, not a huge eater, would that play any part do you think? Im not getting my hopes up for her comment, I will be content if I can get past this going to the bathroom every two hour hurtle. [ more ]
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J-Pouch ForumsGeneral Discussion
Bone Broth Protein Powder - any good?
M Maxx
ytcrockpot Hi Maxx, would like to know if you tried the bone broth powder and what results you received. Thanks Yvonne [ more ]
Maxx Thanks for your responses. The powder is not really cheap, its about $3.50 for single serving pack sold at Fresh Thyme (Organic/gourmet foods chain) I will give it a try to see if it does anything. [ more ]
Winterberry Hello, Maxx. Ive never tried a powder bone broth. I drink bone broth or sometimes vegetable broth that I make ever since my reversal a year ago. It helped keep me hydrated from the beginning of my recovery and I believe it made the recovery period shorter and less complicated. If I don't drink it for a few days, I have pouchitis-like symptoms. I drink one Mason jar almost every day. I don't have pouchitis except by my own fault when I have an overloaded sugary dessert or too much refined... [ more ]
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J-Pouch ForumsK-Pouch Korner
Lack of sleep
Patricia WalkerPatricia Walker
marz I have a Barnett pouch and recently have been waking up at night with pain (which does not feel like gas pains). I've had the pouch for 15 years, but 3 years ago I had a 1.5 inch "stone" in the pouch and even though it was removed, the pouch has never been the same. I go to Dr. Shen at Cleveland Clinic and a few years ago he prescribed opium tincture (formerly called paregoric) for pain. It's liquid and about the worst tasting stuff in the world--but it does work for pain the in the middle... [ more ]
Patricia Walker Thank you for replies. My problem is the K pouch that wakes me with pain, but it always has. [ more ]
JLH Also factor in situations that can dehydrate you, in particular airplanes. I've ended up in the ER, in places such as Qatar – – no rhyme intended– – Because of dehydration. Last summer for dehydration got so bad I was in hospital because of kidney failure. Be careful [ more ]
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J-Pouch ForumsGeneral Discussion
I have lots of questions!
M marie88
Scott F The bacterial strains in most yogurt and other cultured foods/drinks do have a very low survival rate in the stomach. The strains in reputable probiotic products are selected to have much higher survival rate, and have shown real effects in decent clinical studies. [ more ]
Cdub I was always told by medical friends that the fad for live cultured yoghurts, and yoghurt drinks like Actimel and Yakult, are complete placebos, as the bacteria don't make it past the stomach acids anyway? [ more ]
whatif Greek yogurt with LIVE cultures is sooo much better for the gut and intestines to balance things n help the body do what it needs to. eliminating sugar will also help hugely as that is what will feed candida, yeast and other bacteria. flagyl can have some long term negative effects and destroys the bodies Natural ability to make healthy gut cultures. myself, I'm highly allergic to flagyl . might be good to see a colon/rectal doc to determine if its the stomach or the colon; I've found CR... [ more ]
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J-Pouch ForumsPouchitis
Pouchitis & fishers
SN Stephanie N
Stephanie N Hi Jeane, my gastrointestinal surgeon dilated the swollen tissue he called it stenosis and the area a stricture (like what you described) It was a same day surgical procedure an a out patient facility. I haven't had any problems with leakage of bowel control (other normal with a pouch anyway). Thank you for the advice, I rarely drink alcohol (special times) but I will cut do the sugar. This is the first time I've had fishers and they are really awful, I have this compound ointment from the... [ more ]
jeane steoanie I have the same issues as you. Along with prior suggestions, increase your water intake, avoid alcohol and sugars and processed foods. This helps keep my pouchitis under control. Reduce. stress too when you can I am curious as to what surgery they performed for your swelling. I have chronic, painful fissures and they go dormant until pouchitis acts up. I also have narrowing of the anal canal due to this and a chronic stricture at my pouch outlet. I'm having pouch advancement surgery... [ more ]
Stephanie N Thank you, I will look into that. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Severe lactose or milk protein intolerance and immodium without anhydrous lactose in it
M meghspd
meghspd Hey Scott / Jan I will ask the pharmacist if he /she has one without lactose . I use to take lomotil intially since my ulcerative colitis days but didnt feel it helped too much .. I use to take 2 tabs after every bathroom trip ...After jpouch ,I took it for couple years the same way .. with same expierence .. it would help a little but not too much ... By then I became aware of this group and researched about it .. That when came to know that imodium might work better ... Thanks to this... [ more ]
Jan Dollar Note, the Rx capsules DO have lactose. The pharmacist does not make them. My insurance does cover them, but only because my doctor wrote my Rx with a non formulary exception. I've been on loperamide capsules for over 20 years. It is the liquid formula that does not have the lactose you are concerned about. I was incorrect though. It does have simethicone listed as an inactive ingredient. If you cannot tolerate any form of loperamide, get a prescription for lomotil. Jan [ more ]
Scott F Well, Jan says her Imodium capsules contain lactose, so that might be true of all of them. Have you considered Lomotil instead of Imodium? Lomotil works better for me, though some folks do better with Imodium. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Azithromycin or Penicillin
J JoVic
JoVic Well now both my daughters (4 and 2) and my wife came back positive for strep A so it looks the whole family is going on a round of antibiotics. I'm now day 4 on the penicillin VK and have really bad nausea and a constant ache in my pouch. No loose stools, oddly I am going less. I may have seem some blood in the stool last night which really freaked me out. Could have been the cherries in the Lara bar I ate the day before. I have doubled my dose of Florastor and Culturelle. 3 more days to go... [ more ]
Jan Dollar Don't you just love it when experts disagree!? But, it seems like your pediatrician is looking only at the kid's angle, not the more global family thing. The idea is to look at it on a communicable disease basis and the fact that YOU do not need your daughter as a reservoir. I know that they are really clamping down on antibiotics for every little sore throat and earache, but, this is not that situation. Jan [ more ]
JoVic Thanks Jan and Scott. I started on penicillin. Nausea for sure otherwise fine. Got my kids tested and my 2 yr old tested positive for strep even though she no longer seems sick. My ENT and her new pediatrician (we just moved) are in total disagreement. My ENT says treat her and squash it lest the strep make the rounds in the family and the Pediatrician says leave her be since she is as asymptomatic now. I'm certainly concerned with my history of lung and sinus infections and now "UC of the... [ more ]
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J-Pouch ForumsGeneral Discussion
Jury Duty
L lab
Scott F Some years ago I was in a jury selection process that ran quite long - the judge didn't break for lunch and we didn't get out of that room until after 2 PM. I remember thinking that the judge was being irresponsible because any diabetics could get into trouble. I'm lucky enough that it didn't occur to me that a J-poucher might also be in trouble. [ more ]
suebear I have sat on a jury many times with my jpouch. I have never found that I needed to inform the judge, nor did I feel that I could not be up to the task. I always try to remember that if I ever needed a jury I would want someone like me on the panel, therefore I serve. Sue [ more ]
Tanner I got my doc. To write a letter about my Jpouch. By law a disability is the loss of an organ. No colon And leakage from rectum will get you out of jury duty. Have your doc. Do a letter. Good luck. T. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis or not
bederyparisbederyparis
Jan Dollar Could be either one. If it only last a few days, it's something you ate. But if this is ongoing, could be pouchitis. I focus less on the frequency and more on the urgency, cramping, excess gas. Even if the frequency is clustered, it's still frequency and can be due to pouchitis. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Does Lemon Juice Work?
J JeremyNY
whatif Its about nutralizing the pH. Both a squirt of lemon juice or a splash of raw apple cidar vinegar do that very thing.. it does not eliminate it..it does help fight for the balance where the raw sewage isnt as acidic. It takes more than one glass a day and does take time to readjust the bodies pH from acid to alkaline. [ more ]
Veggiescott It seemed to help me; I'm 11 weeks post takedown and I continue to drink lemon juice in my water [ more ]
Bobish To be fair everyone gets butt burn at first, it normally gets a bit better after a few months, the body is still adapting to your new transit time. Probably not a lot you can do about it for now (beside use cream) [ more ]
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J-Pouch ForumsGeneral Discussion
How much water do you drink at one time
VeggiescottVeggiescott
Former Member ❤️
whatif Being in a constant state of dehydration without a large intestine. .I drink more than the "half my body weight in ounces of water"daily.. That is my minimum to keep things flowing. I can down a 12 to 16 oz of room temp water without issues..I do tend to drink my water through out the day and never with meals.. and since Im up through the night visiting the Throne Ill take a sip of water then as well.. lemon juice or raw apple cidar vinegar splashed in water helps to nutralize the acid output. [ more ]
Evan Forgot to add it was told to avoid drinking 30 mins before and after eating to slow the bowel down to digest as much nutrients as possible [ more ]
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J-Pouch ForumsGeneral Discussion
Leakage; why, what has changed?
VeggiescottVeggiescott
Scott F Leakage while you had a loop ileostomy isn't really related to leakage from a functioning J-pouch. Leakage is the most common complaint about J-pouches. You might have pouchitis, though, and 10-14 days of an antibiotic might fix you right up. I've always used psyllium powder twice daily, and that seems to help, too. [ more ]
CTB23 Usually I only have leakage when the pouch needs to be emptied and I can't get to a toilet quickly enough. I used to have night time leakage but that has stopped. I also take 2 Immodium in the evening before bed. So, I tend to wear light pads during the day if I am going to be away from home for a while. It is an annoyance, that's for sure. [ more ]
lablover My husband just wears one at night, that is the only time he has some leakage. I think that is because he likes to snack late at night. :-\ [ more ]
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J-Pouch ForumsGeneral Discussion
1 year after takedown, just one question
SW Sharon W
CTB23 I have no trouble peeing without pooping. [ more ]
Veggiescott So far, it's very rare for me to not go #2 when I'm there to just go #1 but it has happened a couple times, but as I said its rare. Can't say I'm real happy with that....... [ more ]
Scott F I've been thinking for a while that peeing without pooping is far more useful for us than may seem obvious. I also think it takes practice and attention, at least for me, and might significantly reduce the frequency of BMs for some. Here's something I wrote a while back on the subject: https://www.j-pouch.org/topic/p...2#434913817490905942 I can't quite tell for sure if this is related to your issue, Sharon, and the "standing up" part really isn't my point at all. Good luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Just hada surgery for a twisted bowel
BA Bill A
Jan Dollar Maybe you need some antibiotics for pouchitis or bacterial overgrowth, since these symptoms seem to be lingering. Jan [ more ]
Bill A Thank you for your response. Its been 6 weeks and my abdominal pain continues. Not as severe but it seems any food intake causes increased pain. I fear blockage but also constant BM as difficult. I want to use lopedermide but worry it will cause constipation [ more ]
Jan Dollar Bill, I think the point your doc was trying to make is that now that there is no colon, you should not try to slow things down and thicken stools too much in an effort to simulate a function of a colon/rectum. The small bowel does not stretch like the colon and does not have the muscles of the rectum for emptying. If you slow things down too much and use too much fiber, you may be courting obstructions. Granted, a twisted bowel can just happen and hopefully, they took care of any problematic... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Nightime issues
KR Katie R
Scott F It's most likely either pouchitis or SIBO. My guess would be pouchitis. [ more ]
Sonja6 I went though this for years! I'm a very hard sleeper once I can actually get to sleep. So I would sleep right through the pain and wake up to having to strip the bed and take a shower. I started having to set an alarm for every hour to get up and go potty. But not getting good sleep will take its toll on your body. Then one day it just stopped. I could sleep all night, granted I would explode in the morning. But that's better than it was. Cutting out gluten helped alot for me too. My... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch. To have OR not to have
BenBBenB
Evan I'm in a similar situation for different reasons, I was due for j pouch surgery to remove my rectum due to FAP in August having previously had a colectomy in 1994. However mother nature has decided that I shall have kidney stones likely due to years of dehydration due to missing large colon and rather frequent bowel movements. It's got me worrying about whether I'll struggle even more with dehydration once part of small bowel is used to make the pouch or go straight to perminent ileostomy or... [ more ]
Mysticobra You get it Jan. Thays exactly why I tried it. And no it was not on a lark. No birdies here. No regrets. The other way was one and done. Thinking maybe the pouch would have been better than this. But it wasn't. So I'm good. Thats why I like to hear the successful ones when they do come along. Rare.... here anyway. Richard. [ more ]
Jan Dollar Exactly! I feel the same that I wanted to opt for the j-pouch, otherwise I'd always wonder if I "missed the boat" on the opportunity. Once the rectum is removed, you cannot have that option. One point, that is valid, is that j-pouch removal is a big surgery. So, it really isn't like trying it out on a lark. Of course, if we had a crystal ball we would not have to wonder. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Ventral hernia
CdubCdub
Jan Dollar Mine was done with mesh too. It's held up fine. Just so you know, Sharon also has a connective tissue disease, so her healing is not typical. Jan [ more ]
Cdub Thanks, that's good to know. The surgeon mentioned mesh, so hopefully that should do the trick. My work is pretty physical, lots of lifting etc, so hopefully this was just a one-off and not the start of things to come... [ more ]
skn69 For about 8 yrs I have been getting them like flyers in the mail...They pop up when least expected...I had never experienced one before 2008 and then boom...5 or 7 since and sometimes in 2's and 3's...don't know why...just is (maybe menopause has weakened my tissue, maybe something else). The 1st one was peristomal and very scary and difficult to fix...had outside-to-inside surgery that didn't take (necrosis) then full open surgery...finally got it to hold with laparoscopic & mesh fix... [ more ]
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J-Pouch ForumsGeneral Discussion
Gastro Recommendation - Southwest Florida
S SusanG
SusanG Thank you. I was a little concerned there were no docs in the area familiar with the j-pouch. [ more ]
marz Dr raymond Philips, Naples, on goodlette road near coastal mall (near golden gate road) he knows about pouches and even did a scope on me! I know he has several j pouch patients. He is also in charge of the chrons and colitis support group which meets once a month in Naples. .The medical group also has access to clinical trials. There are 4-5 doctors in the group, but I would try for him. He knows what pouchitis is and has prescribed different drugs for me. I now get drugs from Canada and he... [ more ]
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J-Pouch ForumsMen's Health
trouble adding weight
J jhennessy29
Cdub Yep, join the club! I struggle to maintain my weight, and have to eat a lot every day. If I don't, I can drop six pounds in a day easily. Weights and protein shakes help for sure. Enjoy being slim and being able to eat what you like! [ more ]
kemp Thanks Joey, I basically do the same thing as you. I must have an high metabolism. Will start the weight training again. In a way we are lucky. Who can eat avocodos, lots of butter (the best by the way is KERRY butter made from grasfed cows, which is better for us than the organic), Haagen Dasz Ice Cream and Lucini olive Oil, and nuts, without gaining any weight. Haha. Gotta go to lift some weights. [ more ]
JoeyJpouch Gaining weights been trouble. If you have a high metabolism it's difficult. The only way I can gain weight is if I eat the right foods, proteins, calories. And lift weights at the gym to gain muscle. Supplement with drinks and shakes too. I like foods high in fat that stay with me like avocados, olive oil, nuts. [ more ]
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J-Pouch ForumsGeneral Discussion
Do you think this is normal?
MochiMochi
Cdub I'd chat to your medical team about the first two questions. I expect the mucus varies from person to person - I was told to expect it but didn't really get any. However I can imagine the opposite is true from some people. I'd never heard of butt-burn until I found this site, years after getting my pouch. If my skin got a bit raw from going to the loo a lot, I just rubbed any cream on it, and that did the trick. [ more ]
JB788 I did have that excruating pain and it did eventually get better but it was tough and seemed to be much worse at night. Butt burn is irritating but manageable. Get some ilex skin paste, it is amazing! I am just about 4 months since take down and the butt burn is far and few. Good luck to you on your take down, this next surgery is a breeze in comparison . [ more ]
Former Member Question 1: No, I never experienced shooting pain in my groin area, I never experienced any pain whatsoever from the surgery, I didn't even use the pain meds which were on some kind of push button pump. Question 2: During the first week of my J pouch creation I had a blood drain in my abdomen, but I never looked at its output; I had open abdomen surgery, so my movement and mobility was restricted. The mucus output from the J pouch seemed as if it was never ending. Initially, so I've been... [ more ]
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J-Pouch ForumsGeneral Discussion
loud rumbles..IPS?
PouchomarxPouchomarx
Cdub I definitely get this, and am used to laughing off the surprised looks from people nearby! I always assumed it was trapped wind (or wind moving through the small bowel, anyway), as it seems to co-incide with needing to empty the pouch within an hour or so. [ more ]
Bobish It's called (gastro) colic reflex. Basically 15 mins after eating your digestive tract starts contacting and stretching in order to move food through the gut (and eventually out). The rumbling will be gas or liquid or both rattling through your non standard shaped bowels. Reducing gas forming foods and thickening your output would help, exercises to stretch and move the gas through the bowel will help as once expelled it will go quiet again, but that's something you need to do at home... [ more ]
Scott F This is pretty common. I'm not sure it has a particular name, but if you're feeling fine I *wouldn't* call it IPS. As you have observed, it seems to have little to do with your pouch. Our small intestine gets rearranged to end at our pouch instead of ending in the right lower corner of of our abdomen, so perhaps that rearrangement makes for some unexpected twists and turns, and some noisy movement of intestinal contents. [ more ]
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J-Pouch ForumsGeneral Discussion
Buying medicine online?
D DZAtl
marz I buy rifaximin (xifaxan)from Canadian King Pharmacy. The price is alot less. You have to call them and get an order number first. The order number must be on the prescription that your doctor faxes them. They take credit cards, no problem. It sometimes takes 3 weeks to get the drug. Ther is a small shipping charge and it usually comes USPS. Sometimes it's from India, other times from cAnada. I did check with the pharmacist at CVS and she said the rifaximin is exaxtly the same as xifaxan,... [ more ]
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J-Pouch ForumsGeneral Discussion
Trying to go Vegan with a blockage history
ALX_oooALX_ooo
Jan Dollar I agree that you need the expertise of a registered dietician, as your situation is rare and complex. I do know that with short bowel syndrome you want to maintain oral intake as much as is feasible, as it helps promote better nutrient absorption. With less than two feet of small bowel remaining, it isn't posible for you to avoid TPN. I presume you are taking digestive enzymes with your meals, and if not, you should ask about them. You probably have educated yourself about all this stuff,... [ more ]
Veggiescott Contact Vegan Outreach and/or Vegetarian Resource Group; they both have registered dietitians on staff who may be able to provide some helpful tips. Also try to contact Ginny Messina (MPH/RD) at theveganrd.com [ more ]
ALX_ooo Very good advice, Anniki. Thank you! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Please help!! Tips for reducing acidic bile poo!
MeganEMeganE
Winterberry Hello, Megane. If I'm having a glass of lemon water, I'll squeeze a small wedge of lemon into it. If I'm storing a jug of water in the fridge, I'll slice half a lemon into slices, pierce the slices with a fork and stuff the slices into the jug to steep and drink all day. It's also a matter of taste how much you want the tangy taste. You could add (fresh) mint or cucumber for flavour. A squirt bottle with nozzle will help ease butt burn too. I know a lot of new moms who use it for hygiene. [ more ]
MeganE Thanks Scott F and Bobish, I might try the zantac last thing before I go to sleep and maybe the lemon water in the morning. How much lemon needs to be in it to be effective? Yeah Scott F, whenever I don't eat or empty when I should it ends up being BAD! I am sure they will have something at the hospital they can give, just wanted to try and avoid it in the first place. Thanks! [ more ]
Bobish Another possible suggestion is the frequently discussed lemon water. Done swear by it and some say no difference May or may not work for you �� �� [ more ]
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J-Pouch ForumsGeneral Discussion
alcohol & pouchitis?
kangaroo womankangaroo woman
Scott F There's unlikely to be much alcohol left by the time it gets to the pouch. It will have been absorbed in the many feet of small intestine before the pouch. OTOH, alcoholic drinks have all kinds of complicated ingredients, which (for some of us) might get to the pouch and trigger a response, or might cause a systemic reaction. [ more ]
kangaroo woman Wow...thank you, Haidalyn. I wonder why that is and if it has anything to do with the fact that it sits in the pouch versus making a quick pass through it if we still had our colons. I just had a class in grad school in which we learned that only 20% of alcohol is absorbed in the stomach, and the other 80% is absorbed in the small intestine, so there's quite a bit available for our poor pouches to be exposed to. I definitely won't be hitting the alcohol ever again. This makes me very sad....... [ more ]
Haidalyn Absolutely triggers a flare up for me. Every. Time. I can't touch alcohol with a ten foot pole.... [ more ]
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J-Pouch ForumsGeneral Discussion
Cipro pain in hip.
H Halo52208
Jan Dollar I got joint pain long before I ever was on Cipro. Turned out it was IBD related arthritis (enteropathic arthritis). My vitamin D was also low, and hoped that supplementation would at least help. It didn't. I hope that it works for you. I agree it is up to us to be informed about any medication we are prescribed, and mot just blindly take what is suggested. However, we also need to inform ourselves of the effect of NOT following the doctor's best advice. Usually there are other options, but... [ more ]
Janiep I understand what both of you are saying but the hitch here is that ongoing Pouchitis increases the failure of your J-pouch! That I couldn't live with!!! But the arthritis thing does disturb me since it runs in ly family! I just had blood taken and my Vitamin D is lowwww so I just started that today and if the sun would just STAY OUT... that would help! Right now I'm staying on Cipro but will start looking into other drugs... �� [ more ]
claire I wasn't advocating forgoing needed medications, I'm advocating for informing ourselves, and asking doctors for alternatives in the context of when someone is sadly already reporting ongoing pain.... and let's face it that none of us can know how common or rare side effects may be, especially with a drug with a known delayed side effect profile that can impact so many body systems. [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Joint pain
T toiletcamper
claire If you were taking Cipro / Levaquin or related class of antibiotics in the weeks OR EVEN MONTHS before, this may be why. Here is a links to hundreds of media reports and academic papers about that. https://floxiehope.com/fluoroq...nes-links-resources/ [ more ]
Annikki I have a healthy pouch and was taking no medications at the time. It blindsided me. Everyday is different. I have some chronic locations but it moves around. Yesterday it was ankles knees and toes...this morning I have less pain and the little I have are in my knee and fingers. [ more ]
Jan Dollar Not necessarily. Inflammatory arthritis can be acute and is different than osteoarthritis, which is from degenerative changes. Those antibiotics can cause joint related side effects, especially with long term use. It can be a tricky diagnosis. The first step is to stop those drugs if they are suspect. Jan [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
lower back pains
PouchomarxPouchomarx
cassiecass Update diagnosis with Fx in spine.I Thank an MD at NYU who saw the condition I was in.No Thanks to an ER MD who did not know a thing about anything in my book but rudeness Please Prayer for me to recover soon..Cassie [ more ]
cassiecass He the ER Md had no clue to a J pouch ,Thyroid disease except Thyroid disease can be nasty .I was told I was old and too in tune with my body Last year I obstructed and was in Septic shock told by surgeon any sudden moves it can happen again .Told go straight to ER.So this was the response and medical care i received Cassie [ more ]
EricaLeeJpoucher Pouchmarx, I hope everything gets better for you. I wish I could help but I don't have that kind of pain Cassie, I know what you mean about we doctors only giving you pain meds. When I've been in the ER they just give me pain meds or some kind of meds. When I had my temporary ileostomy, the ER staff really didn't know anything about it. I also had an ER doctor ask me how my surgeon was going to reverse my ileostomy. These are the reasons I hate going to the ER and I try to avoid going there. [ more ]
See all 20 replies...
J-Pouch ForumsGeneral Discussion
Flushing K pouch with grapefruit juice
A angilanr
angilanr Lol. He actually said directly I. The pouch. Just didn't know if I should let it sit "like Drano" before I drain it out. Ang [ more ]
ElmerFudd Perhaps he meant to drink it? Grape juice = liquid plumber for the gut and thins everything out. Sounds like you can't drink much, but 6-8 oz of grape juice would help. I use it all the time with my j-pouch. Not sure about putting it directly in your pouch... and it doesn't matter purple vs. white. [ more ]
angilanr Have had very very thick drainage despite water flushes. Also have some terrible gas stiff. Almost like it dosent get in the pouch. Can't drink a lot because of gastroparesis [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Advice from Canadian J-pouchers?
M mremp
Karenchase I will echo Min990's advice above. Once you are sorted with your BC MSP, definitely look up Pacific Gastro. I actually found Bressler via RateMDs.com (or whatever that site is called). I had been with another GI whose "care" had me unnecessarily addicted to prednisone and leaving her office in tears the last time I saw her. When I got over that trauma, I looked up that website, found Bressler, and got a referral from my GP. It took a few months to get in to see him. He did everything he... [ more ]
min990 Hi Mremp! I'm in BC as well and had my proctocolectomy / pouch / reversal all done last year. Could you please clarify what condition you have? You may just need to be in more frequent contact with a gastroenterologist. Surgery is often last resort and it is unclear which medication combos you have tried. Usually, you get referred from a family doctor to a gastroenterologist. If they can't provide any different medical management, they refer onto a general surgeon. I think you need to see a... [ more ]
Annikki I had my surgeries done at Kelowna General hospital for the the first step and then had j-pouch and takedown at St Pauls in Vancouver this was in 1997 & 98. I wasn't really on a waitlist as it was emergent and then j-pouch and take down were done once my healing were done. I did have a complication so there was 11 months and three surgeries. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Work requiring a physical
C canlafre
Mysticobra Good luck. You'll get it. It will settle your mind. That part anyways. When you have what you have. It's enough on your mind and no need to worry whether you will lose your job. That's why it's there. Takes that worry away. Richard. [ more ]
Mysticobra Thing is the paperwork has to be signed by your Dr's. Takes time to go through the paper process. But it does give you protection and rights. They won't mess with you and fmla once you have it. They don't where I work. They found out the hard way not to mess with fmla. They are dead serious. R. [ more ]
canlafre our benefit person is out till Monday so I will do it then. Which should be fine, as our supervisor is out till Thursday of next week anyways. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Tequila: yay or nay?
JB Jordan B
Jordan B https://www.google.com/amp/s/w...is-good-for-you/amp/ https://www.thedailymeal.com/h...ot-tequila-every-day http://wjla.com/features/good-...-of-drinking-tequila [ more ]
Jan Dollar Well, I suppose the tequilla distillers would like you to think that their spirits are more "healthy" than others, but it does not make much sense to me. However, in general moderate alcohol intake is fine. In addition, there are studies indicating imbibers live longer than non-drinkers, but I don't know if that is a true cause and effect. If tequilla works for you, then there you go. Just remember, less is more. Drinking more than one shot a day has a definite downside. [ more ]
Bobish Not specifically tequila, but my doc was clear that I went through the operations to obtain a 'normal life' outcome so alcohol was no problem. I only really drink a small amount (maybe 2 drinks) once a week though Tequila is mostly alcohol but contains a few simple sugars, can't see that causing any problems. Not sure what health benefits you would see from it (my understanding is it helps reduce cholesterol of taken before meal, although they do say it potentially helps with digestion). [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Pouch
WI Worried in Wi
Capetonian Hi. I am 5 months last takedown and also struggled with constipation. Went for days without a bm's. I now take a mild daily laxative Movicol but it is not enough and I stubbornly won't increase the dose. The worst is a dry stool will get stuck in the anus and will just not come out even with straining which is also not good. I feel like I want to gauge it out. I resorted to enimas self administered which worked but not keen to make a habit. Recently focussed on diet and exercise as solution... [ more ]
Little Tulip Hi Worried, I am 12 days post Ileostomy reversal and trying to adjust to using my pouch. Day 10 I went two days without a BM, got worried, rang the hospital and under advice from registrar (who was looking after me in hospital) took a 20ml dose of Lactulose. That is the same product they give us here in hospital. Tastes like caramel syrup. Works for me every time after 4-6 hours. Admittedly I am running back and forth to the loo for about an hour once it gets going. I am going to try to be... [ more ]
jeane You can take enemas. I have done so. I just use a warm water enema to help empty. Are you still on the medicine that was impacting your pouch? If not, has your function still not improved? I really think you need to contact a gastro. [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone heard of foods containing "lectin" causing problems with pouchitis and other inflammatory problems?
L lewis
winter wish Read it but not convinced! I think the fact he sells a load of expensive supplements is always a red sign. .. some research suggests that certain lectins could actually be beneficial in activating elements of the immune system. The much stronger evidence is that the longest-lived, healthiest people in the world tend to subsist largely on plant-based diets. (Those include lectins, often in abundance.) This case for basing a healthy life around what seems to be working for large groups of... [ more ]
lewis Some of the first foods I eliminated were those I was eating most frequently. Those were tomatoes, green bell peppers, and potatoes. I've also eliminated anything that is "whole grain" such as bread, oatmeal, etc. I've also nearly eliminated all sugar, corn syrup, and splenda sweetner. I have been using small amounts of Stevia and some locally harvested honey. No milk and only small amounts of feta cheese and goat cheese on an abundant amount of spring mix and romaine lettuce salads. [ more ]
Bobish Interesting, hadn't heard of that so had a search..... https://authoritynutrition.com/dietary-lectins/ Basically it's saying lectins bad, in everything, removed or significantly reduced by cooking. Out of curiosity what foods are you avoiding that are giving you the benefit (or what foods are you eating if that's easier lol). I guess anything that gives your gut an easier life is gonna help! [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
How to best get your protein?
N Nork
winter wish I have malabsorption issues, including fat malabsorption so I have to take Creon with every meal. Taking them has improved my absorption of food. [ more ]
TE Marie I wouldn't get a reversal unless there is a pouch failure. I now have an ileostomy due to pouch failure. There is output to deal with it too. I lost a 80 some pounds after my j-pouch surgeries over around 18 months. I had the weight to loose. (Unfortunately I have gained back 30 lbs and I have other health conditions that haven't helped me hold steady.) My doctor was concerned that I was loosing the weight too fast and wasn't looking at the actual amount I weighed itself. You're holding... [ more ]
winter wish http://www.bbc.com/news/av/hea...tein-supplements-use This was discussed on BBC news last Sunday. [ more ]
See all 24 replies...
J-Pouch ForumsOstomy & Skin
Anyone in sydney Australia?
T tiffanygoad
Little Tulip Hi, I had an Ostomy from March till June 2017. Yes there is a scheme under the Australian Federal Gov where you pay $55 membership and receive all appliances and supplies etc free. You deal directly with The Stoma Association from then on not the nurses for supplies. Delivery cost is extra. There are restrictions on quantities per month but I never ran out. If you need their number let me know and I'll get it for you. [ more ]
hever Hi, I live on the Gold Coast and after nearly 30 years my jpouch decided to stop working so now back to the illeostomy In Australia we have a stoma scheme under the Federal Government - assuming it hasn't changed you pay a yearly membership, I think it's summit like $100 and the stoma nurse from where it was all done gives you your order Hope this helps [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Bad flare of arthritis, cuffitis (and during IVF)
J Janeuk
Janeuk My rheumatologist is off ill at the moment, but a locum said something about sending me for an MRI and then potentially to a surgeon to look at the knee. He mentioned something about radiation, so am guessing that is linked to the synovectomy you mentioned. I will have to do some more reading. Thanks for your reply [ more ]
Janeuk My rheumatologist is off ill at the moment, but a locum said something about sending me for an MRI and then potentially to a surgeon to look at the knee. He mentioned something about radiation, so am guessing that is linked to the synovectomy you mentioned. I will have to do some more reading. Thanks for your reply [ more ]
Branchy Hy. I had the same problem. After my j pouch surgery arthritis hit me hard causing pain in my knee, both hips and shoulders. They put me on corticosteroids / small dose/ and it get better. Everything but my knee. For one year I had bad day, using clutches to walk had several punctions. My knee was swallen a lot. Nothing helped. Then my reumathologist said I need ateroscopic cleaning and I went to orthopaedist. He look at my knee and said I need synovectomy becouse my synovia is in flame and... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Bo Shen diet
winter wishwinter wish
Susan 1000 ❤️
winter wish I was trying a vegan diet which in retrospect didn't suit me. I have thrown out the carbs and restocked! Interesting Inly a few weeks ago aquired kefir and I am making it with goats milk. Thanks [ more ]
BuckeyeNate I'm not sure there is more to it than what you've said. Avoid refined sugars and refined carbs (processed foods & white breads). I would also recommend adding kefir to your diet if you have not done so. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Constipated and need help!
H HeatherPyle
Balletbarre Thank you so much. I'll see what I can do here. I had to quit the flagyl. Too hard on me. [ more ]
Bobish Yeah I eat meat, my staple is turkey or chicken, but beef prawns and fish too. I don't avoid lamb, just didn't crop up much, in fact lately I've been reading more ostrich or kangaroo as the local butcher is diversifying lol I eat mushrooms, corn on the cob, popcorn much as I like (and I'm a lousy chewer). My one restriction is spicy food, but that's only cos of the butt burn. I can have 1 chilli in a stir fry or a mild to medium curry but no more! I wouldn't quit the antibiotics just yet if... [ more ]
Balletbarre Do you eat meat? [ more ]
See all 26 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

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

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