J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
I thought I wanted a toilet seat bidet but ended up buying a handheld Brondell Bidet stocked at my local Home Depot for $70. Took 20 minutes to install, no hot water though. Great water pressure and I can aim wherever I choose. Model CSL-70. I've had mine for 2 years. [ more ]
I've had my TOTO Washlet for 15 years. It is beginning to show its age and so today I went shopping for a new one. Actually, I want one similar to what I have. They no longer make the model I own but one which is similar. The best news is that it is $347!!!!!! I'm not handy so I'll have my plumber switch it out for me. He put the one I have in for me years ago! Best wishes! [ more ]
Thanks very much. I Just bought the Toto so I"m happy to see your recommendation. Best, Debbie [ more ]
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J-Pouch ForumsGeneral Discussion
My pouch is 15 months old. I go between 5 to 10 times. Mostly diarrhea. Have had Cuffitis twice. Pouchitis three times. And diagnosed with crohns. I take loperamide two to four times per day. Methotrexate, Folic Acid once a week and Remicade once a month. I’m stable at the moment. I don’t have much to complain about where the pouch is concerned other than some pain. [ more ]
Thanks to everyone who has replied. And yes, I'm very well aware that everyone has a different "normal" due to our circumstances. I had my surgery in 2016 and I was just curious to know how things were going for others. I'm currently taking VSL and CBD oil twice daily, I exercise 4-5 days/week and I'm pretty good about my diet. Nothing totally excluded, but try to not go too crazy with sugar, alcohol, processed, etc..... I probably have about 6 BM's daily and get up 1-2 times nightly. I have... [ more ]
As Michael already noted, this is a support board and if you are looking for a representative response to your question, you are not really going to get one here. The so-called normal here is probably a lot different than the normal of all J Pouches. The answer is that you will have more BMs than average for all persons because you are missing a significant portion of intestinal tract and food will go through you faster. This of course is basic physics and gravity, but the individual... [ more ]
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J-Pouch ForumsGeneral Discussion
The surgeon who did my BCIR is Dr. Ernrst Rehnke who practices at the Palms of Pasadena Hospital in St Petersburg, FL. He is an excellent surgeon and the care at Palms is superior. His website is: www.bcir.com . This website contains a lot of information about the BCIR (which functions the same way as the K pouch) that you could pass on to your surgeon. On this website, you can order a packet of information that contains a DVD about the procedure and a list of about 300 people with BCIR’s... [ more ]
Bill, who was your surgeon and what hospital. My surgeon didn't know about a k pouch. Thanks [ more ]
Deathstalker - Last fall I developed a huge perianal abscess, which I had drained and a mushroom catheter installed during an EUA (I already have an RV fistula with a seton, since '11). After the EUA, I was admitted for IV antibiotics, as it was septic. While in the hospital, I couldn't handle all the drainage from it - it was similar to an ostomy without a bag, so my surgeon suggested surgery for an end ileostomy while I was there, leave the pouch in 'til things heal, and then remove the... [ more ]
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J-Pouch ForumsGeneral Discussion
I love camping, but the truth is it's just not practical. I need proper facilities, and I'm a hygene freak. If possible I would always choose a cabin with bathroom in the woods over a tent with questionable facilities. [ more ]
I have been camping dozens of times since my surgery. Other people run off to the toilet as much, if not more, than me. When you decide to try it, I suggest just you and your boyfriend, or maybe one other couple, and avoid the big group thing. On our group outings, everyone is in a different place in regard to fitness, so we don’t do long hikes together. My boys were 6 and 8 when I had my surgery. They grew up with camping and it is a favorite family vacation. They are in their 30s now. Jan [ more ]
Hey CTBarrister...glad to hear about your hike. I was starting to wonder if you felt you could leave your house given the killer bears and the nostril-swimming amoeba! (Said entirely light heartedly! ) [ more ]
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J-Pouch ForumsGeneral Discussion
Funny, I only had the pouchogram to check for leaks before the last surgery. Just curious as to why your surgeon also did the sigmoidoscopy as well. [ more ]
I am assuming the pain was pretty high because my back door has been closed since December. It's starting to ease up right now, but going in for another dye test today to make sure there are no leaks again since they stretched it. Surgery is Wednesday for my take down. [ more ]
Did she say anything about the pus from around your stoma? I had an abscess develop while I was waiting for my take down. It was under the mid-line incision and there was some pus that my surgeon had said was "normal". During take down they discovered the abscess and I had a huge hole that needed packing while it healed for several months. I hope the pain is getting better. I would complain about it if it doesn't get better. I had my j-pouch dilated several times and there wasn't as much... [ more ]
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J-Pouch ForumsGeneral Discussion
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Yeah just be little cautitous while adding dairy and nuts. There maybe some nuts that go down and some can cause irritation. Plus you can start practising yoga half hour daily in morning its a good booster for the day. [ more ]
Thank you Raj, I will put all these in my lifestyle more so than before. Although I'm not a smoothie fan, I'll try add it to my regime. Classic line of 'Tired being Tired'. [ more ]
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J-Pouch ForumsGeneral Discussion
I do not have any other symptoms except some soreness and tightness [ more ]
Thanks Jan, I saw a new general surgeon today that I went to see about an eventual gall bladder removal at some point down the road. Since Remzi left Cleveland he stated to get in with Dr Dietz at University who is head guy over there and trained under Remzi. He referred me to this general surgeon and he was able to get me right in. Surgeon at Cleve Clinic told me earliest I could get in is 2 months..lol. He stated that the area I was concerned about is of no concern. He said he can feel the... [ more ]
So how much does it extrude when you cough? You can also hold your breath and bear down to feel it. A minor protrusion is nothing to concern yourself about. You do not mention any pain or other symptoms. I would not get ahead of yourself about a repeat repair until you have it evaluated. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
PlantFusion - vegan protein powder helped me when I needed it. It's for sale on Amazon and such sites plus retail at health food stores. It has 21g protein per serving. I use unsweetened vanilla almond milk to mix it in plus make it a smoothie by adding various fruits & veggies, kale and a banana. Whatever you like as this is a good way of getting in those needed fruits and veggies too. My favorite flavor is chocolate and it's 120 calories. [ more ]
Eggs, nuts, and quinoa. Protein shakes adding peanut butter. Edamame. [ more ]
Whey protein shakes are usually a good replacement for me when I am trying to cut back on meat. [ more ]
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J-Pouch ForumsGeneral Discussion
Update on the diet. I am slowly eating more and more different types of veggies. No spicy food still. I'm not sure I will venture down that road for a long time. I have not had any problems with veggies so far. I might go to the bathroom one more time a day if I partake in a good amount that day. Carrots and onions are the only things that dont agree I think. I have not done too many beans of any kind because I don't want gas too bad. As a result my skin has gotten a little better. Not... [ more ]
I swear my magic elixir is green smoothies. Something about the chlorophyll in the greens I feel reduces inflammation. But going on a liquid diet for a day or two always gets me back on track and feeling better. A green smoothie is a smoothie consisting of a green leafy vegetable like spinach and kale, and a sweet fruit of your choice. [ more ]
Nice advice guys. i am going to get more potassium in my diet. I eat a banana almost every day but I am going to get sweet potatoes in there too. Not sure about the wheat grass but I have been thinking of getting some supplement powders. Namely moringa and chlorella. Has anyone tried that kind of stuff? The benefits are supposed to be really good but everybody is trying to sell you something right. [ more ]
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J-Pouch ForumsGeneral Discussion
Fwiw I'm totally fine with popcorn too.. but then I eat everything, and not slowly. Chewing for me is also optional (fortunately) lol [ more ]
My hubby eats popcorn. [ more ]
Hi Gottswood, I have eatin popcorn once since the UC and j pouch. That being said, I ate it at a movie a couple of weeks ago. I am 3 months out from takedown. I ate way more than I should have or meant to, because I love movie popcorn and it is addictive. Anyway, I was fine, no I'll effects. Lucky me. To be on the safe side though, Google hulless popcorn. I have seen it in the grocery store, but have honestly never tried it. It might be the safer thing to try. [ more ]
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J-Pouch ForumsGeneral Discussion
How often do you get tight strictures? I have anal strictures but mine is complicated by a fistula. I was told to try the self dilation but I've never been able to do it because of the pain (I think because of the fistula). It seems to be a 2 year cycle for me so I prefer to just go see the surgeon when I feel the stricture developing for a dilation under anesthesia (FUCK NO to an office dilation). My surgeon has never suggested an office dilation because they hurt too bad and its good to... [ more ]
There are some tools. Look up Hegar dilation, but do check with your Dr first. [ more ]
How do you self dilate? [ more ]
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J-Pouch ForumsGeneral Discussion
Omg Jeff’s Mom, im so sorry he is still having issues! Momma, your son is young. Trust Remzi and good luck. [ more ]
Sounds like a plan [ more ]
Kim! Yes we could have! Our apt was at 11:45 I think. Then Jeffrey came home and my husband and I went to the Met Art Museum for a little while. Then we met some friends from Japan who are here on vacation. Let’s get together soon. I could meet you at Starbucks for coffee. dianne [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Hey thers you've been doing great so far believe me . Its a good thing that your stool is well formed rather than all liquidy . Drink enough just to stay hydrated . Its bery normal to have a strained anus for initial 2-4 weeks. Its eases with passing days. I too couldnt clear up in visit in initial days. Even when I used to get a good urge only a little would come out and my muscles would just contract back making it very painfull . As soon as I'd get back to bed the same urge would come... [ more ]
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J-Pouch ForumsGeneral Discussion
Thats great news. You should give yourself time. It was a big operation and you were on ileostomy for so long your muscles just need their time to adjust back to the new normal which they will eventually. Just stay away from the medical shit as you got the operation to get off them in the first place. If you visit a doctor he'll prescribe a medicine to ease you up else you wont find him usefull but you gotta know for yourself if its absolutely necessary ( just a thought XD ) . A probiotic... [ more ]
My GI did a scope today. Pouch looks great, no pouchitis, no stricture. Said the cuff was just pretty inflamed and should calm down over time but is putting me on hydrocortisone supp for a week. Said maybe canasa after that if doesnt improve much but has been improving over last couple days. Also recommended VSL #3 that I know quite a few folks on here use. Anyway just an update. Maybe I should have waited since its so early but that straining freaked me out a little ha. Thanks for all replies! [ more ]
Wow, sorry to hear things are not getting better for you. To thin the thickness of stool, you can cut back on the white rice, pasta, potato's and like starches. I think alot of us use metamucil with good results. If you do have a stricture it's prob. best to have a more watery stool until the GI or surgeon can dilate if need be. Unfortunately for all of us, when the pouch is new it mostly trial and error until we find what works for us. Thanks for keeping us informed and good luck with pouch... [ more ]
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J-Pouch ForumsGeneral Discussion
I go to Dr Ginsburg in Hampden and he has a office in Guildford as well. He’s amazing. I went to three doctors before I got to him. He helped me through remicaide, a trial drug and finally my j pouch (with a surgeon). He’s keeping me on track with everything from my vitamins, my bone density tests (i have decreased for my age bc of all the pred), working with my arthritis doc, and now I’m prego and he’s helping me through that. Not sure how far it would be for you, but I travel over an hour... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Calmoseptine - the only answer to butt burn. I use it several times per day. [ more ]
I have a Coco bidet. I bought it through the company. It's the complete one, not the attachment style. It has temperature controls for the water, a heated seat if you want, and a dryer as well. We did have to have an electrician install an extra outlet for it. [ more ]
Since my October input, another product I use for painful irritations Which included pouchitus is an OTC lotion called Tronolane. It 's works like Prep H but it takes care of the pain an discomfort immediately. And my go to (bottom burn) OTC standards are still Desitin, A&D , (system slow down)OTC Metamucil & Loperamide 2mg. Hope this helps! [ more ]
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J-Pouch ForumsGeneral Discussion
I use it and I am fine. [ more ]
I use melatonin but I also have odd dreams when using it. [ more ]
I use temazapan as needed. I had a problem with ambien with my j-pouch. I needed to use the restroom more at night than before I had the surgeries. I would fall asleep on the toilet and had a bad fall from it. I woke up when my head hit the tile floor. If you don't have a problem with it now I don't see how it would be different. Hopefully you won't need to get up as often but in the beginning you will be going to the restroom more often than with a trained j-pouch. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
I agree on the baby mattress liners. You can get some from Amazon- they use them for elderly incontinence, under chairs or even in hospital beds for easy clean up if you have an accident. I think I ordered a few after my takedown. I keep them handy if I get sick- if I’m having a gastro big I find I leak easier. When my body just isn’t working right bc Im sick, all sorts of leaking happens. Stay strong!! 🤛🏼 [ more ]
I think this is normal so soon after takedown, two weeks is a very new pouch. It will get better. Your muscles and new pouch are learning how to live its new life, learning what to do. Remember that your pouch used to be your small intestine, expected only to absorb nutrients. Suddenly it's expected to be a colon and hold stool. Give yourself time. For now, try not to eat big meals late in the evening, or eat less fibrous foods and vegetables for now, and have more pasta, basmati rice,... [ more ]
I had an ileostomy for many years before J pouch surgery, I've never done or been advised to do Kegels, not saying it won't help your situation, just don't think the length of inactivity makes much of a difference. Since takedown surgery, just before being discharged, my Surgeon said I can start the Imodium immediately, He also said, he's wont suggest how many Imodium tablets to take, as it will depend on the frequency of BM, so best I work it out myself, as to what works best. He did stress... [ more ]
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J-Pouch ForumsGeneral Discussion
Hey Mynewbutt. I'm wondering how you're doing now? [ more ]
Thanks Aimc. I am actually not doing all that bad. There are just those times you wish it was steady as she goes but it's not. I'm rolling with it though. There is a new challenge with in each day...keeps it exciting. Lol. I really like to hear the progress at different stages from those of us in this situation. [ more ]
Brett, Im sorry you are having such a hard time. My surgeon also put me on a very low fiber diet. Less than 13 grams a day, also called low residue. Avoid caffeine and carbonated beverages if possible. Following this diet is suppose to decrease volume and bulk stool. I also use lactose free milk. Lactaid is the name brand. It's not bad. I wish there was a magic bullet for us, but I guess we just have to go through this. I hope it gets better for you soon. Aimee [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Potassium deficiency is quite common with IBD (and with ileostomy, as well); going 20 years without encountering it, even during flareups, is impressive. Is it possible you had these deficiencies at other times in the past and either the proper tests weren't run or you weren't informed of the results? It's concerning that you were left in the dark for so many years about these basic fluid issues even as you suffered symptoms that could've been directly related to them. Do you currently have... [ more ]
Other than the rehydration solution I can't be bothered making special meals, too much hassle, I just eat anything and everything, always have done, although now I"m aware of the symptoms of low potassium and how similar such symptoms are to dehydration or lacking iron, then I'll remember to eat a banana every day I don't ever recall low potassium or folic acid during my 20 odd years with UC, even during flare ups; nor with the ileostomy. Such issues have occurred since the creation of my J... [ more ]
During my recovery I drank a lot of homemade soup, bone broth, and miso soup. You can buy powdered miso in small packets or miso paste from any health food store or any Asian grocery store (probably less expensive). Miso has a high sodium content so it might help with any dehydration problems. Added some cooked rice and chicken, wilted spinach, and that was a good soft meal. [ more ]
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J-Pouch ForumsGeneral Discussion
There is no problem in going into water with an ostomy. I've been in the ocean with mine. The stoma is covered with the appliance's bag and the outside water doesn't get in. I've also been in hot tubs and swimming pools. I shower with mine on sometimes too. The appliance stays on and the tape around it doesn't come off either. As far as the man in the article I just wouldn't have anyone go into that water. [ more ]
That guy may have sustained cuts or scratches while crabbing. This kind of thing is very scary. I mostly confine my own aquatic activities to heavily chlorinated swimming pools. Although when I visited my parents at their condo in Florida in March, a day after a big storm, I was shocked to find a dead rat floating in the pool. We called the pool guy and he “shocked” the water which I think is just code for 2 or more gallons of Chlorine. Pool was closed for 24 hours. When you swim in... [ more ]
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J-Pouch ForumsGeneral Discussion
This pain subsided after about 4 months. I would talk to your surgeon as at 8 months this shouldn’t be giving you issues. [ more ]
Hi Anthony I am 8 months post takedown and still have the buttocks area dull pain. Can't stand for long time. It's a dull pain. I need a coccyx cushion while sitting. Maybe it is slightly better than what it was 2-3 months post takedown. I want to know after how many months post takedown did your pain subside? Thanks [ more ]
Thanks Anthony I did visit my surgeon. He said it doesn't seem like pouchitis as there's no abdominal pain, fever or increase in stool frequency. So I guess as you said it is the pouch expanding which I suppose is a good thing [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Hi I also have similar symptoms of tail bone-buttock area pain which worsens in standing or sitting for long time. How long did it take you to overcome the pain? I am 8 months post takedown. Thanks [ more ]
thank you! [ more ]
There have been numerous posts here on tailbone pain. Doing a search and reading the lot would likely be very useful to you. Here's what I replied to one in April of last year: A couple of years ago I developed significant tailbone pain (it was worst when getting off a chair - I would make quite a face getting off the stationary bicycle). I never really did much about it, and it very slowly receded and is now essentially gone. OTOH I've been on antibiotics the whole time, more or less, so... [ more ]
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J-Pouch ForumsGeneral Discussion
It’s rarely a good idea to treat a lab result unless you know exactly what the lab result represents. I don’t know what symptoms you still have, and I’m *very* glad the fevers stopped. If you have no symptoms you might consider declaring victory. That’s what I would do. The sed rate (ESR) is completely nonspecific, and may not mean whatever you think it means. If you do still have symptoms that’s a different story. [ more ]
I don't think it's a coincidence that the ESR rate dropped when the fevers stopped. You may have had an infection that resolved and, if so, you will never get an answer. At least it all went in the right direction. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
I don't know if this is what alock is referring to, but my rheumatologist said that in her experience a positive rheumatoid factor can be caused by various autoimmune diseases, not just rheumatoid arthritis. When my RF turned positive a few years ago, during an IBD/arthritis flare, I asked if my diagnosis would be changed from spondylitis to RA and she said not unless more specific RA labs came back positive (they didn't). OP, do you have a rheumatologist? Many of them have enough experience... [ more ]
Yes I have UC. What do you mean a false positive testing for RA? They just test for RH factor. Mine is negative. Everything they've ever tested me for is negative. [ more ]
Did you have UC? I STILL have the same after 34 yrs. The doctor told me they would get a false positive testing for RA. [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks a lot. [ more ]
It only lasted a day or so whilst still in hospital and just after my takedown surgery. Its not occured for ages now, in fact, quite a few years. When It was occurring from time to time, I applied the ilex paste as described and by the time of my next BM all pain, irritation or discomfort had gone. [ more ]
Thanks a lot for your message. This is exactly the case now for me. Could you please let me know when this got okay, that is, how many months after the takedown? Thank you again. [ more ]
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J-Pouch ForumsGeneral Discussion
I have been on Manuka honey for almost a year either 10 UMF or 15 UMF, by Comvita, and it has improved my reliance on Cipro for pouchitis greatly. I take 2 spoonful's in the morning and wait for 30 minutes before I eat, and I take another 2 before bedtime. I have not had to take antibiotics in a long time. Now with that being said there are tons of Manuka honey suppliers out there as well, but you have to pay attention to the UMF (unique Manuka factor), I myself only buy Comvita, and I have... [ more ]
I cannot comment on manuka honey, but cannot imagine much bang for your buck. But, no harm in it. I do understand cancer anxiety. My dad died of pancreatic cancer. Can’t blame it on drugs. My step-mom was so careful with diet, exercise, and medications it made her nuts and difficult to be around. She still wound up with lung cancer and she never smoked. So, life is risk and we all die of something. Sort of a fatalistic view, but I like to choose my risks, especially if they improve quality... [ more ]
Thanks so much Jan. I’m just so worried about pumping medicine into my body. I get married in 3 months and lost my dad to colorectal cancer two years ago. I’m an anxious mess when it comes to my health. I am most likely going to at least try the stelara, if anything, to really knock this bout out. I have been reading up on great results with makuna honey that I plan on starting to take some with warm water every morning. Just want to start taking care of myself as the past 8 years I’ve just... [ more ]
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J-Pouch ForumsGeneral Discussion
Some good info here. [ more ]
I am a former j-poucher who was shocked post surgery by the many ways having a j pouch could be worse than an ileostomy or life with a wonky colon. So first, I would recommend googling something along the lines of “j pouch failure rate” or the like and making sure you are prepared. There are a lot of stats thrown around, but the latest numbers from docs I trust who see both the good and the bad is that around 50% have complications (some minor, some major) and 20% are removed (for varying... [ more ]
I’m almost a year post op, 38 years young, and just got pregnant for the first time. The surgery has literally changed my life, my ability to do things I enjoy and the way I enjoy life. I have been through three obstructions, so I want to reiterate that it’s not an easy road, but in my opinion it’s worth it. Min terms of the take down surgery, idk if it will be more challenging for you since you’ve had your ostomy for longer than I did (2 months). Some times adhesions or scar tissue will be... [ more ]
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J-Pouch ForumsGeneral Discussion
Your welcome I do take extra strength gas pills, they help sometimes. Its hit or miss with food, sometimes I’ll go months with no gas, who knows what triggers it. [ more ]
Thanks YTCROCKPOT for your reply. I'm really hoping it starts to get more manageable and less painful. I would really like to go back to work sometime soon. [ more ]
Hi, I’ve had my takedown 37yrs ago and still suffer with gas, sometime extreme, sometimes normal. Just seems to be the way it is with our plumbing. When it happens to me in public, most think it’s hunger pains, I just go with that. Hope it gets better for you. [ more ]
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J-Pouch ForumsGeneral Discussion
Normal for me is anywhere from 7 to 10 times a day. About 1/2 of those are not real productive, 1/2 are. To me, high frequency is pretty constant, as in 3 to 5 times an hour or more, urges where I run to the restroom and not a lot happens. I know when the opium is wearing off because I start having to live in the restroom. It is like a tablespoon or so of stool collects and my body wants to expel it ASAP. Spazms begin and sometimes I leak. Not a good thing when I am surrounded by 13 year... [ more ]
I'm curious. What do you consider high frequency to be? What symptoms do you have when you are experiencing high frequency? [ more ]
I admit to being bad about sugar. Other than that, my husband and I are both foodies and eat a homemade, pretty healthy diet. There are places I will need to tweak it - sugar being the first thing to look at. I did want to respond and ask you about diet, but you told me anyway - thanks. The last few weeks have been nonstop and by the time I collapse on the couch, my mind is too exhausted to even think of checking websites. [ more ]
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J-Pouch ForumsGeneral Discussion
Yeah, I was thinking I was due. Like u, I don't like the program though. [ more ]
I have pain when doing any kind of physical work or certain exercises. I have rectal bleeding and burning; unbearable at times but not always. I have anemia and take a b-12 injection. I just started a new med for IBS called Methscopolamine Brom 2.5 mg. They say I have IBS, SIOB and mechanical mobility. [ more ]
What other issues do you have? BTW cancer is also something you don’t want to have to go through, if you don’t have to. I speak from experience on that. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Humm good advice. I’ve gone more today since lunch and I’m feeling better overall. I should say Monday I did vomit in the morning and in the evening but felt immediately better- I chalked it up to morning sickness. [ more ]
I think you’ve got it right - most likely a partial obstruction. The other possibility that needs to be considered is an ectopic (tubal) pregnancy, which is a Big Deal, so you might want to call your OB to make sure that isn’t what’s going on. If it’s an obstruction the stabbing pain is not “gas passing through” but rather bowel getting stretched as gas/liquid/solid is pressed into the obstruction without being fully able to escape. I’d encourage you to stay hydrated, but not necessarily to... [ more ]
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J-Pouch ForumsGeneral Discussion
I used one for several months to heal an abdomen wound after my colon ruptured. It helped with the healing but the process was tiresome. Plenty of times the seal on the wound would not be perfect and then the machine would buzz. So, it was a hard few months but the wound vac allowed for healing deep in the wound. Stick with it and the negative pressure from the vac will help in your recovery. [ more ]
I lost mine (misplaced) when I was done with it and they tried to charge me. (I found it tucked away in the closet 9 months later. Lol) Only problem I had. Never noisy or not working Richard (sorry no help with my reply.) [ more ]
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J-Pouch ForumsGeneral Discussion
Joey, The fevers are a concern and I would ask your doctor what cancer(s) would be detected on the blood tests you had done. If you are not satisfied with the answers ask for a referral to an oncologist. FYI, I am a stage 3 thyroid cancer survivor and I have blood tests done every 6 months. What those tests specifically look for is a protein that is produced by thyroid cancer cells. If the results are less than 0.1 there is no activity to worry about. I take synthroid (thyroid hormone... [ more ]
Something immunological (autoimmune) is more likely than cancer, I think. There are lots of body part, and lots of ways they go wrong. I don’t know what blood tests were done, but I’m sure there are plenty more tests available. Since the chest discomfort isn’t new it’s less likely to be part of whatever’s going on with your flanks and fevers. [ more ]
All pain preexists the accident. I've been examined and tested by my GP and cardiologist. The only level that's been abnormal to this point is the ESR. My GP ran tons of bloodwork (6 vials) three weeks ago and all was good, ESR 32, up from 26. I read the lab report, but I don't know off the top of my head what was ruled out. I did scape my hand and knee, but both have already healed. The fever started two weeks ago. It comes and goes (mostly at night) and never goes above 99.5. Of course I'm... [ more ]
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J-Pouch ForumsGeneral Discussion
Yea, i agreed with the person who posted that the feeling of fullness and urgency are two different things. I often felt urgency in the beginning but it was just a fullness. I’d rush to the bathroom bc that’s what i was used to. But i think i could have probably lasted longer. As time as gone on, I’ve been able to extend my trips. And now I can easily give myself a time on how long I have until I will need the restroom. If I’m traveling in the car with my hubby, I can easily say, I will need... [ more ]
I go every time I eat. Depending on what I have consumed the need is either very urgent or I can wait a while. Like Bobish, I eat everything except blueberries, and lots of tomatoes. I guess my total is about 6 times a day. I had my colectomy in 2012 and jpouch in 2013. I am very very happy with my gut health. [ more ]
Personally I go about 8 times a day, but... I do eat everything without restriction though, broccoli, lettuce, kale, popcorn, corn on the cob mushrooms, everything. I'm not even careful to chew properly. I don't eat hotter than a medium curry though... And I only take 2 loperomide a day. If I ate less and closer to the traditional pouch diet and took more loperomide, I could probally hot the 4 to 6 as required [ more ]
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J-Pouch ForumsGeneral Discussion
Grace I took remacaid for several years back 8 -10 years ago while only having severe UC.....4 hour in hospital infusions once every 2 months first 5 cc. and then with slow results helping my infections increased to 10cc. and went on for almost a year or more before I had a bad reaction while in the infusion process my GI doc said I had built up a resistance to the mouse antibody that Remacaid is made of, the hospital staff watched as I turned red and my blood pressure dropped dangerously,... [ more ]
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J-Pouch ForumsGeneral Discussion
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I was born with Hirschsprung's and had my "Modified" Swenson Pull-Through at age 5. About 2 years post-procedure began struggling with constipation again which became progressively worse into young adulthood until finally diagnosed with total colonic inertia. (Kept all 24 Sitzmarks at 3 weeks!). There was suspicion that my first procedure left an aganglionic segment. It was recommended that I get rid of the entire colon so I had my J-pouch at age 36. Now age 60. Except for a few bouts with... [ more ]
I did a search and there have been no posts by anyone regarding Hirschsprungs since 2013. This was the only thread found. Hopefully someone with a knowledge base will come along for you. https://www.j-pouch.org/topic/...ing-for-alternatives Jan [ more ]
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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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