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J-Pouch ForumsGeneral Discussion
Weight Gain
J J.T.
Annikki Sounds like you are doing everything you can. I can send you some of my extra weight [ more ]
Scott F If you don't have a dairy issue beyond lactose intolerance then hard cheeses should be fine for you. Just a thought, in case it helps. [ more ]
J.T. Thanks for your quick response Annikki! I appreciate it. I do eat carbs everyday. I purchase gluten-free breads made with potato, rice & corn, and have at least 2 slices (sometimes 6) each day for sandwiches etc. I eat cornflakes with coconut milk or gluten-free pancakes every morning. Along with a meat, I eat brown-rice pasta or white rice several times per week for lunch or dinner. In between meals, I eat Lucy's gluten-free cookies, corn chips, & potato chips. I drown a lot of my... [ more ]
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J-Pouch ForumsGeneral Discussion
Stelara
S Susan33
J.T. Correct, nothing significant yet! [ more ]
J moons JT, so you've been Stelara 4 months with no improvement? [ more ]
J.T. I started Stelara end of November 2016 with a hospital infusion. I then self injected at home in January & March. I saw minimal improvement in March. Hoping the May injection will be dramatic improvement. Like you, I tried Entyvio & had no luck. I also had no luck with Remicade, Humira, and Cimzia. I am taking methotrexate with the Stelara to help with antibodies. Cipro works but I am hoping Stelara can allow me to get off antibiotics so I can rebuild my gut microbiome. [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone experience broken blood vessels in their eyes due to auto immune inflammation?
J jeane
J moons Oh it's painful? So it's not the white of your eye that's red? I was assuming he told you it was simply a broken blood vessel. [ more ]
jeane Thank you for your response. I feel relieved. Yes. I did wake up with this in the morning. Both eyes were very red last week when doctor thought it was an infection. Hoping it clears soon. Painful. [ more ]
J moons AI inflammation in the eye secondary to crohns or colitis, aka uveitis, would not cause a broken blood vessel. People commonly wake up with broken blood vessels. The two are unrelated. That'll clear up in 1-3 weeks and may look worse before it looks better kind of like a bruise. [ more ]
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J-Pouch ForumsGeneral Discussion
Wound Vac/ Barbie Butt
Ashley22Ashley22
Hermione I have had a wound vac on my abdomen from 2nd stage operation ( formation of pouch and loop ileostomy). I had an infection in the wound and it came open and then needed to be fully opened to allow it to drain. I had a wound bag for a week or so but it was channelling and not healing properly. Had wound vac connected and the healing was incredible, loads of fluid was pumped out for first week but after that the wound literally healed before my eyes !! I cannot comment on how effective it will... [ more ]
skn69 When I had mine done they didn't do wound vac but Hemovac...It was tube going into the wound that they kept in there for a week or 2...Don't quite remember...It sucked out all of the fluids and allowed the wound to heal from inside out...It was a pain, litterally, but it worked...it was one of the only wounds that actually closed normally. I would try it...if at all possible...anything to get that wound to heal... Sharon [ more ]
J moons What have you been doing so far? Just packing the wound? Where is the wound? Did you have peri-Rectal I&D? Or have they been packing it? [ more ]
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J-Pouch ForumsGeneral Discussion
Rectal bleeding after surgery
A Aimc
Jfill21 Hi, I've also had Step 1 of 3 done, mine an emergent colectomy 5 months ago. I too, have daily rectal blood/mucus discharge, and can't wait to end it with Step 2. Have transferred medical records to Cleveland Clinic and awaiting their response. Anyone have experience with CC? I'll be an out-of-towner and will deal with the logistics rather than take any chances with a local surgeon. [ more ]
Aimc Thanks for the responses. Im guessing that your final surgeries went okay and you are good with your new normal with your jpouches. Somehow it makes a person feel better knowing someone else went though the samething they are now going through and came out the other side just fine. Thanks again you guys. It helped alot. [ more ]
Annikki I had this too between surgeries and told it was normal. [ more ]
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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 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 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 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 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 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 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 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 ]
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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 ]
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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 ]
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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 ]
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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 ]
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J-Pouch ForumsGeneral Discussion
Gas smell
noya12noya12
Mysticobra Make sure your wife is asleep before you go to bed. Had to inject some humor. Richard. [ more ]
noya12 Thank you Winterberry for your reply. I only have the gas, no other problems. I didn't really think that there was much I could do aside from buying the wife a gas mask to sleep in. [ more ]
Winterberry Hello, Noya12. Gas is normal, a by-product of the food you've eaten. Remember after your reversal? You were not allowed to eat or drink until you passed gas, a good sign that your bowels had started to work again. Fragrant gas can be caused by the food you eat, for instance onions, eggs, garlic, asparagus, carbohydrates, beans, curries, and spices to name just a few. You could try taking a Beano tablet before your first bite of food to help with some foods. People with their colons have gas... [ more ]
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J-Pouch ForumsGeneral Discussion
Seriously Lightheaded when Bearing Down
NYC GooglerNYC Googler
Former Member My daughter is a cardiac nurse and dizziness or light headedness during bearing down is a sign of a heart problems sometimes. It couldn't hurt to see a doctor..hope you feel better soon. [ more ]
NYC Googler Oh yes, I drink pretty much all day long. Pee numerous times daily and it's is almost always more white than yellow. [ more ]
Scott F Are you certain that you're well hydrated (peeing light-colored urine at least a few times daily)? [ more ]
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J-Pouch ForumsGeneral Discussion
For those fearful of urgency prior to J pouch
FM Former Member
Former Member Maybe it's members of this forum who don't experience urgency who are lucky. One of my biggest fears before my J pouch was urgency, especially when remembering what I'd gone through during UC flare ups and the bouts of urgency and accidents even when not suffering from a flare up. For maybe 6 months prior to my J pouch creation, whilst still deciding whether to have a J pouch or not; I met many a patient who had undergone successful J pouch surgery and they all made assurances that urgency... [ more ]
EricaLeeJpoucher I get urgency a lot and if I don't go to the bathroom right away, I often have an accident. I am only three months post take down though, so hopefully it'll approve one day. It can be quite frustrating and embarrassing though when I have an accident though. Anybody that doesn't have urgency is lucky. [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
Floating Poop
A averyo99
Scott F Fat malabsorption (I called it an absorption "issue" above) is sometimes situational. If it only bothers you when you overindulge in greasy food, and you can tolerate the dietary limitations, then (at least for the time being) you can probably ignore it. Sometimes it will progress into something you're obliged to handle medically, and sometimes it won't. Having your gall bladder removed doesn't necessarily make fish and chips a well-tolerated meal. [ more ]
averyo99 Is it something to be concerned about? It isn't always that way and my diet has very little fatty or greasy foods. Still having trouble eating and other problems due to cuffitis issues. [ more ]
Jeffsmom Scott, fat absorption or lack of absorption? Since I not eat much anymore .... and absorption is an issue for me. I take a boatload of vitamins because half my small intestine and stomach have been rerouted. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Coming off Antibiotics?
A averyo99
drone3 A short course of Cipro caused systemic tendon issues throughout my body. I got floxed and it took me at least 6 months to recover and i'm still dealing with it. Like Claire said antibiotics is Russian roulette. Some natural alternatives I recommend 1. Paleo diet (no sugar,dairy,starch,fruit, preservatives ) 2. oregano oil (put 4 drops in a capsule with EV olive oil) 3. Probiotics (take two capsules 10 minutes before you eat) 4. digestive enzymes with meal [ more ]
claire Hi there, I was stuck in your dilemma dependent on antibiotics but for Perianal disease..... every time i stopped them the problems returned. Its a dreadful dilemma and it turned my life upside down because the side effects honestly devastated my quality of life and I have posted on this board before to try to warn others that if Cipro hits you hard, (and there's no way of knowing if / when), it's not good at all. The side effects can be so devastating that the FDA have released updated... [ more ]
averyo99 I talked to my GI today and she is going to scope on Tuesday and see how things look. Then she thinking about doing rectal therapy (rowasa maybe?) instead of the antibiotics at least for a while and she is hopeful that since I am not that far from takedown that we can figure out a decent treatment. I'll keep troubleshooting! Thanks for the responses! [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Back to a soft diet
GinLynGinLyn
skn69 Hi Gin, Yes, I have Ideas...Tons...get yourself a handheld blender (immersion blender) and cook the dickens out of your favorite veggies like pumpkin, squash, sweet potatoes...And add tons of herbs for flavor...if you cannot eat the herbs then steep them like a tea and then add the liquid before blending...makes for a very flavorful purée or soup. I do tons of soups too...thick, rich...Tasty soups with tons of herbs and a dollop of heavy cream for texture and flavor. If you use a lot of... [ more ]
n/a Don't know if you're up for dessert-type items, but I make a pumpkin "custard" (really it's pumpkin pie, sans crust), sweetened as you like with honey, that doesn't give me problems. Whipped coconut cream on top is great with it. I'd be happy to share recipe if interested. I use a lot of avocado, as well - smash it up with lime juice and put it on your chicken, perhaps? Sorry to hear you're having problems again, was just wondering how you were doing! [ more ]
GinLyn The spice limitation is for two reasons: first, for some reason they are making my output more runny lately and second, when I'm more runny I pass things anally and since it isn't used to be used, the spices cause some not-so-pleasant feelings! Gin [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
I don't understand
JB788JB788
Kara Fred ❤️
skn69 Hi JB, Well, pouches are a whole new ball of wax...they need time to settle in and get to know you and you need to get to know them...they are a reservoir, stuff sits in them and has time to marinate (TMI?) and does not just get rushed out like an ileo. Give your body time to adapt. Most of us pouchers eat a very large and varied diet with few restrictions and those are generally personal or specific to our bodies' needs. I have a K pouch (same pouch, different exit) and need to be careful... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Buzzing or electrical currant
skn69skn69
CTB23 I just started with coconut water, which I don't love, so I add diluted orange juice. Both have a lot of potassium and diluting the orange juice I don't get so much sugar. Good tip on the salt. I'll add that to it. [ more ]
Bobish SKN69...bit of a coincidence but I had my 3 month appointment with my doc yesterday, im doing good but I did mention reduced energy levels (as I still like to cycle etc). He said basically what I already knew, hydration really important blah blah. But as I had no dizziness or cramping I hadn't considered dehydration as a possible cause. Anyway he suggested I made my own rehydrating drink. Basically.. 1 litre of water 6 flat tea spoons of sugar 0.5 teaspoon of salt ((a posh salt like rock... [ more ]
skn69 It is asparagus and artichoke season here and I tend to eat a lot of them but also drink the cooking water that is full of vitamins as well as being very, very diurectic...meaning I pee 22xs/day...although I keep hydrating I may be losing too many trace minerals...I will try to add a few other elements to my 'water' and see if that helps...if not I will hit the supplements aisle at my local drugstore. Sharon [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
Needing to go
D Dunninator
EricaLeeJpoucher Have you tried colestipol? It works for me and keeps me from pooping as much. Just make sure to stay hydrated if you decide to use colestipol. I'm just trying to be helpful and colestipol may not work for you. If you do wanna try, you'll need a prescription for it. I am only 3 months post take down, sorry I can't be more helpful. [ more ]
Dunninator Nope, not butt burn. I take 1 lomotil a day, more than that and I really can't empty. It may be pouchitis, but I was hoping taking VSLDS would help. I don't want to be antibiotic dependent. [ more ]
BuckeyeNate It shouldn't be painful (unless your talking about butt burn). You may want to try lomotil. [ more ]
See all 4 replies...

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