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J-Pouch ForumsGeneral Discussion
Poucher Lifestyle
skn69skn69
CTBarrister My question is can we join with a Fake Facebook account which has no accurate personal details? I maintain an anonymous fictitious Facebook account which I use to access Spotify, and for the other limited purposes of messaging a few friends, and accessing other Facebook pages. Is this permitted here, or must one have a real/authentic Facebook page? I should note that my Facebook account doesn't identify me as the user but it identifies a fictitious person with a cartoon photograph - much... [ more ]
skn69 You are welcome to ask...I consider it a privilege that she is allowing me to 'advertise' it here... Sharon [ more ]
Bobish Good job Sharon. I wonder if Jan would be happy to make this thread a sticky so everyone can find it easily. [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch scars
BenBBenB
Former Member ❤️
Vesp if the surgeon does say he won't do it keyhole and you're really set against having a big scar, there is potential to ask for a referral to somewhere that will e.g. St Marks in London (specialists in ibd) I requested referral there when my other consultant was running out of ideas to treat my problematic UC, 2 years later I had emergency surgery there in the middle of the night, all was done keyhole. I've currently had 2/3 stages done, so far 2 tiny tiny scars on my left side one from a... [ more ]
CTB23 Forgot about the small incision above the belly button. Probably because it lines up with my hysterectomy scar. [ more ]
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J-Pouch ForumsGeneral Discussion
Help needed - Wound hasn't healed
R Roger1066
Roger1066 It might do Michael, I haven't been paying much attention, initially it was quite hollow, I had to put dressing inside the wound and cover it with a bandage. After a couple of weeks I saw rapid improvements in the healing and now it's remained the same for months. I do believe that the middle of the wound is more hollow than anywhere else , however as you said if the hole is as small as a q tip its not something I would have pay too much attention to. [ more ]
michaelc78 Rodger does your wound still have a small whole about the size of a qtip I went to the surgeon for mine to today because mine was flowing like a waterfall yesterday and they gave me some gauze that look like the size of a wick to put in the hole twice a day to allow the drainage to come out and not get trapped under the skin which will cause an infection if it's not healed you may have a wound infection so you should see your surgeon asap that could be why it's not healed yet I'm sorry I... [ more ]
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J-Pouch ForumsGeneral Discussion
elevated alkaline phosphatase, PSC, and IBD - oh my!
DJ HDJ H
JeffDC In April 2013, I went to the ER with abdominal pains that radiated to my back, reminiscent of pancreatitis. The blood work showed the pancreas was ok but my liver enzymes were high. I had an ERCP the next day that showed psc. My ALP levels have been in the 300-500 range since, but the more important component of the Liver function test is the bilirubin levels. If they are above 1.0, I get worried; they are a better indicator of liver trouble than the ALP. When I have a blocked bile duct, the... [ more ]
min990 I've also had elevated ALP results going on for the past year... I had an mrcp done which resulted in an "inconclusive test". they recommended repeating the test in a year. its been very disheartening finding out about needing the proctocolectomy + jpouch surgery last year and also trying not to worry too much about the possibility of having PSC. [ more ]
Former Member I broke my foot in oct 2016. In surgery I believe I'm not positive they gave me IV anti biotics keflex maybe. Well my enzymes went back to NORMAL my dr was like no way. He later found out that some recent studies indicated IV keflex helped PSC So I'll check and ill make sure it's keflex [ more ]
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J-Pouch ForumsGeneral Discussion
Constant Thirst
J JordySimo
michaelc78 I will do that [ more ]
Winterberry Hi, Michaelc78, The hospital where you had your surgery should have a dietician. Every major hospital has an on staff dietician who oversees patient nutrition. Call the dietician's office and ask them to send you the food list, specifically, for their patients with a j pouch or ostomy. It doesn't matter that you no longer have your ostomy. The diet is generally the same. Make sure they know you have a j pouch, are having problems, and tell them you need that special food list. It will be... [ more ]
michaelc78 I'm not sure if your familiar with fap it's famila atemitosis polyposis or not it's where numerous polyps are formed in the colon and you can't scrape them out so the only cure is removing the whole colon [ more ]
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J-Pouch ForumsOstomy & Skin
Gas pain!
TE MarieTE Marie
TE Marie The operation removing j-pouches includes removal of the rectal stump. Are you from the U.S.? If so please get a second opinion. Let me know and I can give you my Mayo Clinic surgeon's contact info. She performed the removal surgery, that included the rectal stump. I didn't do any better in 2 piece appliances. I have fibromyalgia and could not stand to wear belts and that might have helped on one or 2 pieces. Most people change 2 times a week. That's my goal. [ more ]
hever Thats what I'm gonna ask the specialist, I want the rectal stump and disconnected J pouch out but don't know if he will agree. Also have a groin hernia that was just about to be repaired until the emergency illeostomy put that back My stoma nurse said she would show me all the stuff available soon because I want to go on a two piece that doesn't need changing every other day. I've heard they last about 4 days Hopefully the specialist can answer everything, he told me I shouldn't get stuff... [ more ]
TE Marie Heather, I had similar surgery first. She worked on my scarring and adhesions any also diverted from going into the j-pouch out through a permanent ileo. 6 months later she took out my j-pouch and the rectal stump out. That surgery was a year ago. So for 18 months I have been using ileo supplies. I have to change every other day in unless it decides to blow before then. Every time I try to go an extra day I regret it. I am in a one piece Hollister and have to build up half of it with a heavy... [ more ]
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J-Pouch ForumsGeneral Discussion
Things do get better
A AndyS
michaelc78 yeah I try not eat after 5 and I don't drink coffee or tea or any caffine I've been maintaining my day on eggs potatoes baked chicken pasta with olive oil and garlic lots of peanut butter crackers once in a while I'll have a turkey and cheese sandwhich [ more ]
AndyS michaelc78. I think 9 bms a day at 2 weeks is pretty good. I was hitting 15+ at even 3 months. I'm now down to 6-8 which is about average but like jordysimo, I do enjoy abit of chocolate and tea/coffee during the day. Maybe I should try jelly beans instead. Jordysimo. I've only really had urgency in the first 3 ish months, which was not all the time but control was not as good as it is now. This also didn't help as during that time I had pouchitis like symptoms. Now, I tend to have differing... [ more ]
michaelc78 me to and thanks [ more ]
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J-Pouch ForumsGeneral Discussion
Thank you!
ConnlaBOIConnlaBOI
michaelc78 as for meals I try not to eat after 5 pm so I'm not having suprise accidents in my sleep [ more ]
michaelc78 five times daily when I was pushing out my fluids I was emptying probably 15-20 I have fap is why I now have a jpouch fap is famila atemtosis polyposis [ more ]
ConnlaBOI Oh, UC is ulcerative colitis, terrible disease. But it caused all of this within no time of having it lol my output is usually I'd say a litre or less, I'm emptying an average of 5 times daily at the start it was 14 or so because of worrying but I've gotten used to it, and timing my meals [ more ]
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J-Pouch ForumsK-Pouch Korner
Thinking about k-pouch, need some help!!
MG Mikayla Greenway
skn69 Hi Mikayla, Well, lots of questions...here goes for the answers... 1. How big is the surgery? Recovery time in hospital? The surgery lasts between 6-8hrs depending on the surgeon. The prep is 24-48hrs pre-op...They empty out your intestinal tract, put you on a short term run of antibiotics and once you are as clean as a whistle they open you up with a mainline incision. Usually, it is a one-shot surgery. They remove the colon, close the bottom and create the pouch. You have an abdominal... [ more ]
BillV Hi Mikayla, I have a BCIR, which is constructed a bit differently than the K pouch but essentially functions the same. The K pouch valve is constructed with a short segment of your small intestine and holds the pouch contents (stool and gas) inside with no leaking. Once the pouch reaches its full size, approximately 600 to 800 cc, it requires emptying between 3-5 times a day. You normally do not have to disrupt your sleep to empty during the night. The pouch is emptied painlessly and at your... [ more ]
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J-Pouch ForumsGeneral Discussion
Join and muscle pain
DB Dr. B
skn69 So sorry, this life sucks sometimes...especially when you have been on Pred for so long... Talk to your Rhumey...This is his job...he knows which tests to order and which exams to do...once he has done it all you will be able to get a solid diagnosis. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Why no biopsies with pouchoscopy ?
PouchomarxPouchomarx
Pouchomarx yes I have read a lot on here and from my doc that cancer of the jpouch is very low risk. and also since I had a mucousectomy the chances are even lower in the cuff. I have my annual pouchoscopy in July so I will ask Shen again about it. [ more ]
Bobish Risk is low, also biopsy is a very small specific test with varying degrees of accuracy on itself. Inshort there needs to be concern area to biopsy because the pouch is a relatively massive place (compared to a biopsy sample). We are talking spec of sand on a beach. Sometimes docs still random test for 'normal mucosa' but people with JPouch aren't necessarily expected to have normal mucosa. [ more ]
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J-Pouch ForumsGeneral Discussion
Career in Law Enforcement
O Oepazmino
Winterberry Hello, Oepazmino Check the website for your city or state's police force and see if they list the qualifications and health requirements for applying to be a member of the service. You won't find specifics such as j pouch listed, but it should give you an idea of health, height, physical, sight, etc., requirements. A j pouch shouldn't keep you from doing anything you want if you manage to form a schedule of when to eat, your transit time, and emptying. Just like people with their colon. Good... [ more ]
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J-Pouch ForumsK-Pouch Korner
BCIR one year annivesary- still battling pouchitis and severe iron def. anemia
PO Pressing On
Patricia Walker So interesting the above posts. It has taken me years to learn about my diet with K Pouch. I cannot tolerate fats in my diet. This did create the mucus problem mentioned above. This does not happen at all now. For years (after advice from alternative practitioners here I avoided any form of additives in food) I avoid dairy etc. My pain is so much reduced. I believe I had pouchitis for many many years and just suffered as 40 years ago there was no information. In recent years I tried... [ more ]
Bodoni Regarding the BCIR - would you do it again? How long have you had it? Any problems getting the tube in? Any leaks? I have been lucky with pouchitis. Only couple of cases in 15 years. 21 days of Flagyl works for me. My K-pouch leaks a small amount if I eat a big meal and wait too long between intubations. I am considering the BCIR or going back to Dr. Bauer in NYC who did my first surgery in 1976. He says it is about 80% success rate on revision surgery. ( He says valve surgery works best on... [ more ]
skn69 If you are afraid of using tap water (although I have been using it for 35+yrs and have even used lake water (not advisable but I had no choice), ocean water (on purpose) and just about every other type of water) you may wish to invest in a Brita and just filter your water...it removes most of the junk, gunk and chemicals and is so much cheaper than bottled water. I irrigate my pouch daily or whenever needed...They do say that k pouches have fewer incidents of pouchitis than j pouches but I... [ more ]
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J-Pouch ForumsGeneral Discussion
Food
JB788JB788
michaelc78 thanks winterberry I'll try that and see if things change [ more ]
Winterberry Michaelc78, If you like cheese, maybe try cheese and ham sandwiches for lunch to make a change from peanut butter. Try to get real cheese, not the processed kind that is bright orange wrapped in individual plastic wrap! Real cheese will have protein and calcium for you. Or egg salad sandwiches for protein. Chicken salad sandwiches. Maybe see if you can tolerate tomatoes with your sandwiches? If you like sweet potatoes, poke lots of holes all over one and microwave 8 or 10 minutes until soft. [ more ]
JB788 Imodium has also helped, A LOT!!! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Take down
BbeBbe
JB788 Hi muchaelc78, have you tried Imodium? I am just over 3 weeks since takedown and Imodium has helped tremendously. I took my kids to the aquarium today without any issues�� Everyone told me thickening foods, which was mostly carbs, that didn't help thicken. Once I started taking Imodium, I've been eating a more balanced diet and had thicker output, without any major pooping or leaking issues. Good luck to you. [ more ]
michaelc78 ❤️
michaelc78 I've been out since January 30th colon removel then 2 months later march 21st 2017 I am now two weeks into my j pouch and it's been a nightmare I wear depends and a big hug trash bag around me everywhere I go I've had numours things happen blood clots dehydration from constant flowing I don't know what to do I'm loosing money being home I'm going broke about to lose everything I got [ more ]
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J-Pouch ForumsGeneral Discussion
Drinking Kombucha (fermented tea)
R RHolt
J9Pouch Thanks for the tip, diluting the kombucha is a great idea! I also almost couldn't deal with the taste of floradix, but I went in for a breath test to check for SIBO within a few days of starting it, and after drinking that nasty sugar water I found the floradix waaaay easier to swallow, lol! [ more ]
RHolt Hi J9 Pouch, I have not experienced nausea after kombucha, but it does make a little sense. However, I recently starting mixing my kombucha with water. I don't think we need a whole bunch of it. Also, thank you for the iron idea. I do take iron supplements and have not had any episodes of bleeding since then. It really is hard to know what is causing what and what helps! I tried Floradix many years ago and could not really drink it (the taste was terrible to me!). I am glad it works for you! [ more ]
J9Pouch Hi Renee, I actually noticed big results once I started taking a liquid iron supplement (it seems to have stopped my monthly flare-ups of pouch issues). I think that may be playing a big role for you as well! I take Floradix Iron and Herbs, not sure what other brands are out there. It doesn't taste great, but it's been totally worth it! I recently started drinking Kombucha, and I've actually felt a little nauseated the last two days and was actually coming on here to see if anyone has... [ more ]
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J-Pouch ForumsGeneral Discussion
Quick questions from a newbie
JB788JB788
CTBarrister I had 4 blockages in the 6 months after takedown and then none in the 25 years since. Right after surgery there is swelling and there can be some adhesions, and even though you are feeling good raw veggies and fruits can be a gamble. Eventually everything settles down and now I eat a diet that is like 80% raw fruits and veggies, in fact I just had a salad for lunch with raw kale, pumpkin seeds, scallions, celery, Brussels sprouts. You can eat anything once the Pouch is fully healed but after... [ more ]
michaelc78 I'm supposed to be going on vacation to key west Florida next week I hope I'm able to go it's a far travel from my parents house in ny [ more ]
michaelc78 that's easier to control versus water I don't drink and I try to stay away from tomatoe sauce if possible [ more ]
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J-Pouch ForumsGeneral Discussion
Long term follow-up care
duck11duck11
CTBarrister If you had dysplasia in the Colon and/or chronic inflammation of the Pouch you should be scoped annually as you would be at risk for rectal cuff cancer. If neither and there are no discernible issues with the Pouch, long term care may not be needed. [ more ]
michaelc78 ctb23 how long you had you pouch I'm just wondering if you are having lots of bowel movements and how long do you think it will take to slow mine down [ more ]
CTB23 I am also over 60 and had dysplasia as well, so this may be why my surgeon indicated frequent scopes. I'll see what he says in July. [ more ]
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J-Pouch ForumsGeneral Discussion
Coco Bidet
JennieCJennieC
Winterberry Hello, Michaelc78. For all sorts of bidet, check the Amazon website for bidet. They have all models, price ranges. You can find them for around $50 up to $300. They need to be attached to the toilet without too much difficulty, if you know a bit about plumbing. There are travel bidets for under $15 and they are great because it's a squeeze bottle with a special angled nozzle for aiming. [ more ]
michaelc78 another problem I'm having at the moment the tip of my tounge is sore I went to the dr the other day and they gave me two vitimins to take saying that was the problem but it's back again [ more ]
michaelc78 are they battery operated and what's the travel one look like and how does that work I'd like to travel as well like going on trips but right now it's very hard are they easy to hook up ? [ more ]
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J-Pouch ForumsGeneral Discussion
Purse-string wound
K KC23
michaelc78 my wounds are 12 days out they used all staples to close mine but the staples slowly worked that wound open on one end and mine still leaks also and my stomach still is draining where the staples are tomrrow is my appointment with the surgeon to remove all my staples hopefully it will be good news [ more ]
Winterberry Hello, KC23. Once you get your stoma wound sorted out, try to walk once or twice a day outdoors. Now that spring is here go for 20 or 30 minute walks everyday to rebuild your muscles, especially abdominals. Even if you are hunched over, walk anyway! People seeing me walk like a 120 year old didn't worry me (much) because it was more important to get my strength back. It hurt so much I worried I would be hunched over for life, so I walked all the time and everyday it got a little better. You... [ more ]
KC23 My wound ending up splitting open and needed these long sutures cut out. Omg haha I almost said I was walking like a hunchback in my post but figured no one would know what it was haha. Yea it hurts so bad to walk and my stomach gets so bloated and I don't know if that pain is normal or not but it hurts so bad yet my surgeons PA acts like my pain should be gone.. [ more ]
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J-Pouch ForumsHelp! Need advice now!
How do I know what pouchits is?
BA Bill A
michaelc78 I don't know what pouchitis is but I got to get my staples out tomrrow so I'll talk to the doctor tomrrow they had me on lomotol but told me just to do Metamucil twice a day I was on opium tinsure before take down but was told not to take it after I know like this is not living it's a nightmare and when I report to my surgeons office on the daily because of the output and get told what your going through is normal it takes time they say I had a banana and peanut butter toast for lunch today... [ more ]
jeane Michael. There are things you can try. Prescription lomotil can help. Thicken your stool w bananas and starches. Metamucil will also thicken the stool which can prevent accidents. You should not be suffering as you are. Even a short round of antibiotics can help thicken the stool if you are having pouchitis. [ more ]
michaelc78 ❤️
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J-Pouch ForumsFAP Forum
How much time is need to form stools
BorislavBorislav
michaelc78 ❤️
michaelc78 I know I'm very early in my stage of jpouching its been rough for me the tho I don't know what to eat or drink because things make me run I'm afraid to eat or drink anything because of this I'm so frustrated Imodium or Metamucil has not worked to stop the watery stool I have been in and out of the hospital through both surgeries due to high output and blood clots and verious other things I've never had before the surgeon said the process is easy you'll be fine I feel like I got lied to I... [ more ]
Borislav Thanks, WINTERBERRY i go 10-15 times a day [ more ]
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J-Pouch ForumsPouchitis
Puchitis and the Flu
D dansachs
John95 I know, it's bizarre. Maybe it's not due to the Tylenol, but I have noticed on previous occasions that my pouch would be irritated for a day or two if I took NyQuil one night. But of course it could also be due to activation of my immune system to fight the flu. I've had colds over the years, but they've never triggered a pouchitis episode. I now assume that I've developed some deficit in barrier function, which has allowed the bacteria in the pouch to get down to the epithelial cells,... [ more ]
Scott F I'm not aware of any evidence that Tylenol contributes to pouchitis. I certainly haven't experienced any connection, and I use plenty of Tylenol. Many folks report that their pouches (or their GI tracts more generally) get out of sorts when they have other medical issues, like colds. I've also noticed that connection. [ more ]
kemp Yes, I know. I hate it. Never thought that pain medication could trigger pouchitis. Need to see a doctor. Output is very frequent. Lost 4 pounds in a week and I don't need to lose any. Just hope it isn't pouchitis. Never had it before. What exactly are the symptoms for pouchitis. AS ALWAYS, thank you! [ more ]
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J-Pouch ForumsGeneral Discussion
diaper rash
K kemp
kemp thank you!!!! I use calmoseptine and bepanthen (a german cream), but will definitely try Zincofax and Ilex. Like to get samples from the manufacture for Ilex, who do I contact? Also, months ago I read a forum from a member, telling us he is using a certain tape and loves it. If that member is reading this, please tell us again what kind of tape it is. Covering that spot up for a few days makes sense to me. Thank you all sooo much!!!!!!!!!! We are alive and life is good. [ more ]
Winterberry Hello, Kemp. If it feels like diaper rash, try Zincofax. It's made for babies' bottoms suffering from diaper rash. Their bums are always wet and soggy, wrapped in a diaper, so this cream really has to work. If I use it at the first sign of skin irritation, it heals within hours and I don't usually need a second application. It's gentle and easy to wash off, not sticky. It's formulated to work gently but quickly for babies' skin, so it's got to be good for pouchers too. After my takedown my... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Tremendous pain :(
K KC23
Former Member Sounds like you have an infection. Is the area around your old Stoma site hot to touch or much warmer than other areas of you body ? I had open surgery to create my j pouch and I didn't experience any swelling or excruciating pain. My takedown was roughly 6 months later; there was a little discomfort when getting out of bed or getting up from sitting down but there was no pain whatsoever from both procedures I was even prescribed painkillers to take when home but I didn't need them. [ more ]
EricaLeeJpoucher Have you tried calling your surgeon about this? I have horrible pain that comes and goes. I also get similar pain in my rectal area. Maybe you should go to the er because it could be something really bad. [ more ]
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J-Pouch ForumsGeneral Discussion
Lower leg pain & Fatigue
M Maxx
Scott F Kemp, we can still get all the GI infections and food poisoning that folks with colons get. Pouchitis most commonly causes frequency and urgency. It's also usually easy to treat with a couple of weeks of an antibiotic. It's only a big deal if ignored or it won't stay away. [ more ]
kemp had my pouch for 2 years. off and on doing great, except periods when output is 10-15 times and almost debilitating because I don't want to go anywhere. First I thought about a virus, because of weakness and just not feeling well. Even though we have a jpouch, we still can catch viruses, right?? but now I think about scary pouchitis, which I never experienced. What are the symptoms for pouchitis. Don't have a doctor. Still seeing my surgeon. I like her so much, because she saved my life, but... [ more ]
TE Marie I hope your scope finds answers. I'm assuming your BP is ok. FYI I kept needing IV fluids and was diagnosed with low blood pressure. Ever since I started LBP medication I haven't needed IV fluids. [ more ]
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J-Pouch ForumsGeneral Discussion
Considering reconstructed pouch removal rather than take-down
J JsWife
Pouchomarx I have never had to run to the bathroom, I can hold it long enough to get there if need be, but the slight leakage just occurs without me knowing it [ more ]
EricaLeeJpoucher Before my take down, I didn't have much leakage. Now three months post take down, I rarely have any leakage. Sometimes I have to rush to the bathroom, but I always make it in time. In the beginning, I had a lot of leakage and had to change clothes a lot. I used to leak through to the bed by the way.It would help to have pads for the bed or adult diapers if it gets bad enough. I think your husband will be okay, especially once the j pouch matures. [ more ]
JsWife Thank you for writing! I'm glad to hear you're doing well it will certainly give him hope. Thanks! [ more ]
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J-Pouch ForumsGeneral Discussion
Coffee and caffeine
aka KNKLHEADaka KNKLHEAD
EricaLeeJpoucher I don't drink coffee much anymore, but I do drink soda. Soda makes me gassy and if I drink enough, I'll have to go to the bathroom a lot. The last time I drank coffee, I had to go the bathroom a lot. [ more ]
Annikki I use to drink a pot a day before I got UC. With my j-pouch I can handle one or two cups as long as eat something like toast with it or else I get fire bum and the runs. [ more ]
aka KNKLHEAD Thank you! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Tingling sensation
D Doggtired
Bobish Dehydration is a popular topic on here at the moment. Seriously just try drinking more, what have you got to lose! Don't forget the salts though. Try a rehydrating drink and see how you get on. That said tingling could also be sleep posture etc, pillow too high, anything.. but hydration is a quick fix with lots of benefits, definitely try that first. Incidentally did you know you are supposed to visit the chiropractor regularly like a dentist! No I'm not a chiropractor..... Lol [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cherrios and bananas
MIKEEYMIKEEY
Linguist Oranges and pineapple? I wish I could too I would have to plan to stay at home all day long and have the pain relievers and buscopane ready by my side if I wanted to eat those fruits... How lucky you are! [ more ]
Jan Dollar I eat any and all cereals, with the only qualification being that I like the taste. Cheerios, Life, Special K, granola. I do avoid "sugar bomb" cereals, but not because of effect on my pouch, jst health reasons. I also eat fresh fruit every morning. Bananas, oranges, pineapple, blueberries, strawberries, kiwi fruit, you name it. No juice (too high in glycemic index). Jan [ more ]
MIKEEY Thank you so much, have a great day and God Bless. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Gaining weight
alecz222alecz222
Scott F If you haven't actually had any problems from fibrous foods you might want to reintroduce them, slowly and in moderation, as part of a more normal diet. If you're actually getting dehydrated that's both preventable and terrible for your health. Neither of these suggestions relates closely to your original question, though. Nutrition is absorbed along the small intestine, and almost all of that should still be working fine. If your transit time is too fast your food might be getting by... [ more ]
alecz222 No, I do not have any issues with my GI tract. The total collectomy caused most, if not all, of my UC symptom to go away. Now the only issues that I have are side effects of the j-pouch (i.e. dehydration, drowsiness, etc.). As far as skipping meals go, I never skip a meal. I am usually the one pushing others to not skip meals because I feel like maintaining at least 3 meals a day is very important. The only food I avoid are fibrous foods that may cause blockages or natural laxatives (such as... [ more ]
Scott F Aleczz, are there any issues with your GI tract other than a short bit of your small intestine being repurposed into a J pouch? Are you skipping any meals or avoiding certain foods? [ more ]
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J-Pouch ForumsGeneral Discussion
disinfectant spray
I iHateColitis
iHateColitis i ALWAYS put down paper on the seat no matter where i go, except at home. its not for bacteria, its just for personal comfort - i feel gross knowing i'm sitting directly on something public that might have other people's urine on it. [ more ]
Jan Dollar I am a woman, and a nurse. I never put down tissue on the seat. I have even been on biologics for over 10 years. Washing your hands after using the toilet prevents the spread of infections, not cleaning the seat before you sit on it. Jan [ more ]
Winterberry Hello, IHATECOLITIS. I don't carry wipes for the seat but, it's funny, I don't know any woman who doesn't put down a layer of toilet paper on a public toilet seat before sitting down -- even my mother, who is in her 90s! Maybe it's a female thing? The grimiest object in a stall would be the lock, I think. And the flush handle, if it isn't automatic flush. And the floor of the stall. So we use a bit of paper towel or tissue to open the door on the way out. Most public places have caught on... [ more ]
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J-Pouch ForumsGeneral Discussion
Pelvic abscess and fistula
I Iahtus
Scott F I'm sorry you're going through this. You're facing two different (but related) problems: getting the fistula found (and treated), and figuring out your problem defecating. As far as the fistula goes, what has your doctor said? Have they considered a referral to a more experienced doctor, or a different technology, or have they just given up? As far as the toilet trouble goes, perhaps the abscess is obstructing things, or perhaps you've developed a prolapse. Normally a defecogram can help... [ more ]
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J-Pouch ForumsGeneral Discussion
What to do with your frustration when starving at night
CarlitosCarlitos
Annikki Two bathroom trips seem to be the norm for me...i haven't slept through the night in almost two decades. I have a nightlight in the bathroom so I don't need to put on the light. Red is best because it's doesn't disrupt your circadian c ycle. My understanding that this can be normal to have to go in the night. [ more ]
ziacoconuts Your situation sounds somewhat similar to mine, with the exception that I've had my pouch now for about 12 years. Over the years I have suffered with constipation and trouble emptying to the point where I'm now taking Lactulose 2x a day. I take a tablespoon in the morning with my coffee and don't eat anything until about noon, that's the only way I can go to work and have my pouch feel 'normal'. Around noonish I eat a regular lunch, a sandwich or leftovers from the night before, and try to... [ more ]
aka KNKLHEAD Ha, ha .. you will note that we posted as almost the exact same time, and your reply beat mine -- therefore, I didn't read your previous post! Since you are six months, things may get better for you. Best wishes. [ more ]
See all 17 replies...
J-Pouch ForumsGeneral Discussion
Playing Golf....
J JordySimo
JordySimo I'll be having plenty of them, Todd! Haha. Yeah Michael I'll be seeing him at the start of next month so I'll ask him then. Just thought I'd see how others have got on with swinging a club, etc... [ more ]
Michael To Todd's point, I don't even keep score. Enjoy the game a lot more. Take down was in November so probably didn't play for about 6 months. Took it easy at first, but ask your surgeon ... they should really be the point of contact in case there was something about your surgery that was particular to you. Big picture -- very glad I did the surgery. Physically never had a limitation. Diet wise, I drink & eat whatever I want. Sure I have consequences sometimes, but I believe that our system... [ more ]
Todd C I had my takedown done over 30 years ago and have played golf every year since with no issues except a bad score. [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
ATTENTION THOSE WITH OSTOMIES!!
P phonix2g
Mysticobra A wrap just keeps it out of sight. As for wearing it otherwise I like it cause it keeps the top flat. I am really skinny and wear form fitting shirts and low rise jeans. I'm a male. Low-rise jeans as to keep the waist below the stoma. More comfortable. So it works well. If I'm just hanging at the house I usually don't wear it much. I would like them a little more snug. Next time I get one I'll get a smaller size. But for just a piece of fabric and elastic they are expensive. 30 bucks a pop. [ more ]
Former Member I've never wore a wrap; at the time I wasnt even aware of them. During intimacy, I opted for the small or medium closed bag, never used large one, either commando, wearing boxers or whatever I was wearing at the time, I guess a wrap just around the lower abdomen would be ideal; no interference or spoiling the mood. [ more ]
Mysticobra Well. Hate to say welcome. But I did. I don't do anything special. I wear a two piece drainable. I wear a wrap and keep it empty as to keep it flat against my body. That's it. Nothing I do is special. I have a physical job. Move twist bend. Have to be careful lifting. Pulling and pushing. I don't want to cause any damage. But I do all he above with no problems. No extra stuff. Just wear the appliance and a wrap. Yes. I wear the wrap for intimate sessions. Good luck. Richard [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Biofeedback Therapy
M MShampan
BrendansMom My son was dx'd this week with anismus and Dr. Shen recommended 2 weeks of biofeedback therapy. I'm trying to locate someone in Central Massachusetts that can do this if anyone has ideas. TIA [ more ]
lauren972 Beyond Basics Physical Therapy on E 42nd does it in NYC [ more ]
MShampan I had a test done at the Cleveland Clinic called anorectal manometry. It tests the strength of your rectal muscles, whether you have any anal spasms and how well you are able to expel of all the waste in your pouch. According to Dr. Shen, my case of anismus is causing harm to my pouch prolapse, due to my pushing too hard and not going to the bathroom completely. He believes that biofeedback therapy will improve the anismus condition and thereby provide some relief to the pouch prolapse. Hope... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
How do you know when you have to go? Been getting discomfort..
M min990
EricaLeeJpoucher CTB23, I fart at the worse times, but the j pouch can't help it. It is learning how to do things it's not used too. Plus my boyfriend who has a colon has farted on me in his sleep lol. I think it's funny when someone farts, and I think having humor helps me cope. Sorry I'm immature. [ more ]
CTB23 Same here. Not getting as much gas but usually get the rumblings at the most inconvenient times. I do home visits with young children and my stomach was particularly noisy one day. Mom wondered if it was the dog, so I just let her know that it's just my new system working. We just laughed it off. Some things we just don't always have control of. [ more ]
Amanda74 Hi , I'm just coming up to 2 years and I'm still going 10-15 + times a day and still really suffering with high frequency. I've stopped drinking coffee and under the advice or my consultant have been taking active charcoal which doesn't seem to alleviate the gas etc but hasn't have made much of a change i the high frequency. [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
NYC Pediatric GI
AllyKatAllyKat
Jeffsmom My son is treated at Cornell. I don't know any peds drs but everyone we have worked with has been awesome. [ more ]
AllyKat Thank you [ more ]
TMG Dr Marla Dubinsky is amazing! I do not believe she treats kids only, however, she was my child's 2nd consult re: j Pouch surgery. Dr was located at cedar Sinai in CA. In 2012. I hv heard she moved to NY in 2014? [ more ]
See all 3 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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