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J-Pouch ForumsHelp! Need advice now!
Sexual dysfunction
L lol?
Dog Same here. . .took me several weeks to return to my, uhh, peak form. [ more ]
Scott F It took me weeks after surgery to get my groove back. I was nervous for a while, but it turned out fine. [ more ]
Jan Dollar The fact there was function immediately post op would lead me to believe this is temporary, and likely due to post op swelling and bleeding at is causing nerve trauma. Hope that is some consolation... Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Takedown and traveling
P pinky56
Jan Dollar I think the idea is that you plan for having a rocky time and not for best case scenario. In particular, you do not want to set yourself up for trauma and stress. Maybe you won't be ready for lifting boxes and the stress of a new environment less than two months out from takedown. Sometimes complications occur and you wind up in the hospital for weeks, instead of days. If you plan a schedule where you do not have contingencies, it could be a problem. Better to be sitting there thinking, "I... [ more ]
pinky56 Thanks Sue! She was conserned if I wanted to make this move earlier than April. Mostly blood clots from sitting for too long. Having to go to the bathroom frequatly ( I am already prepared that I will have to wear "female briefs"! Losts of butt cream also. But I would like to get advice for people that have actually gone thro this. [ more ]
suebear Barring no complications, this seems perfectly reasonable to me. Did you surgeon elaborate on why he/she did not think this was a good idea? Heck, I returned to work at 3 weeks and went camping six weeks after surgery! It sounds as if you have given this a lot of thought; I think you will be fine. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
flomax relaxing both sphincters?
W wiggles
Jan Dollar I would think you'd know if you were allergic to sulfa. Azulfidine has sulfa and that is the reason many people cannot take it. Jan [ more ]
wiggles good question. i dont know about sulfa toleration. ill have to look into that. [ more ]
Jan Dollar Flomax specifically acts upon the bladder neck muscles, basically it is selective. But, it can have an effect on other smooth muscle. Without the benefit of a colon and rectum, you may sense it more. Give it a few days for your body to acclimate,and if it isstill a problem you can resume Imodium (which increases rectal tone). I presume you tolerate sulfa, since Flomax as a sulfa component? Jan [ more ]
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J-Pouch ForumsOstomy & Skin
short bowel syndrome with ostomy
R rncrowdis
JillM Having my pouch out and perm ileo was the best thing I ever did for myself. I understand it can be a difficult adjustment, but if your husband sees this as a beginning instead of an end, it will be much easier for both of you. I'm a less is more person on supplies - I use a two piece system so wafer, pouch, eakin seal (moldable ring barrier) and powder when needed and that is it. Paste does a number on my skin. Adhesive preps and removers did too. So I keep it simple. If your husband ever... [ more ]
liz11 In regards to ileostomy supplies... best thing to do right now is to make sure he gets a great ostomy nurse(s) working with him in the the hospital. And then always quick access to ostomy nurses once he gets home. Please note that most home "visting nurses" have limited if not zero knowledge about ostomy care. So just make sure he can get in to see an ostomy nurse anytime he needs one. The first month or so takes a bit of trial and error to get appliances/systems that work and can be... [ more ]
chiromancer Agree with other comments about short bowel issues. I had my pouch excised in mid dec. I basically eat everything, just chew well. Regarding pouches this is really a personal choice issue. Make sure he gets a good stoma one that sticks out 3/4 inch or so and you will have a much easier time in pouching and less leaks and an easier life. A good stoma is critical. I use Coloplast one piece, I have used 2 piece but really dont see much advantage. You can get free samples from the manufacturers. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Antibiotic dependant pouchitis
D dibelljw
jeane Dibell, Just a note that the second time I tried xifaxin I did not have the constant diarrhea. Cipro alone just seems to work for me to the point of slowing my pouch output down to a max of four times within 24 hours. It's heaven as I feel like a person with a colon again but the constipation aggravates my stricture issues. I have backed down to 250 mg X 2 at present and will soon be trying to get off antibiotics for a month or so reprieve if I can. As CT mentioned it is a lot if trial and... [ more ]
CTBarrister I have had no side effects with any of the antibiotics I have taken, except a yeast infection from staying on cipro too long and failing to rotate. Cipro photosensitizes the skin but that simply means you put sunblock on when you go out in the sun. It would seem that the tolerance level of any antibiotic varies by the individual, and trial and error must be applied as to the type and dosage of antibiotic. Mine is high across the board which is a good thing as I have needed to treat pouchitis... [ more ]
dibelljw I do wonder if rifaximin would work better as a drug to maintain remission instead of as one trying to gain remission.. [ more ]
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J-Pouch ForumsGeneral Discussion
celexa
W wiggles
wiggles that is exactly how i feel!!! [ more ]
TE Marie Please give it time to work. It will take a few weeks to a month. Plus your dosage might need adjusting. I really think you should give it a chance as all of the things that are happening to your body now are difficult and scary at times. At least that's the way I felt after surgery. [ more ]
wiggles man that is me. i used to be so well groomed and since my surgeries i have a hard time even getting motivated to shower. i told my wife that even when i had uc i still liked myself and was always hopeful i would beat it and stay in tact but since the surgeries i dont particularly like myself anymore. im kinda weird like that. im extremely ocd, for example if i had and item that i loved and it became damaged i didnt like it anymore. i feel damaged like those items. dang brain of mine. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Can us Jpouchers take the antibiotic Cephalexin (generic Keflex)?
Mhg26Mhg26
Jan Dollar Re: the sinus infection I don't get it that you cannot see a primary doctor for several weeks if you think you have a sinus infection. You should be able to get an urgent care appointment, even if it is not with your regular doctor, within a day or two. These sorts of things are not just a cold, unless you don't have the symptoms. You really don't know if Keflex is the right antibiotic for your problem. I would try calling back and asking for an urgent care appointment. Litmatla: have you... [ more ]
lilmatla I recently have been having gas, flatulence. I had pouchitis in August of 2012 and really have not had the same bowel movements since. I have not felt the same either. The Cipro completely constipated me terribly and I think that is what did me in. I now have hemmroids on the outside the GI tells me. They bleed sometimes and now this gas....and bloating. This has been going on for about 3 weeks.I am totally confused on what to eat and/or do. Too new to me. [ more ]
AllyKat Ditto what Connie said and yes I have taken It for sinus infections. Sonetimes you might need to take it fr 20 days. Oh, and lots of probiotics to ward off c diff. Latley have been given leveguin or bratrim cause they r less likely to cause c diff a d upset your intestines. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
IVF MD suggestions in Boston area
J JanetK
JillM keep in mind that data can only tell you so much...you need to ask the clinic about the cases they take - Boston IVF tends to take tough cases that have low chance of success, but they try anyway. Some clinics choose to only take cases they feel have a strong chance of success. At the end of the day, the number one factor you need to have is trust and confidence in your doctor. So regardless of any data, or anyone else's experience, you need to go with your gut - who do you trust? [ more ]
JanetK Thanks for the info, wondering why the data is so old (2010)?? J [ more ]
speech path Hi Janet! Not sure of your age bracket, but here's a link to the 2010 SART scores for IVF docs in Mass. You can narrow it down by age, too. I copied the link for the under 35 in Mass. http://fertilitysuccessrates.c...n-under-35/data.html [ more ]
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J-Pouch ForumsGeneral Discussion
antibiotic question
W wiggles
Clicky Sorry to hear of your troubles. I can relate - what I do is: - with major urgency use codeine to slow things - seriously control your diet - essencial for urgency. When things are bad I avoid fibre and things like tomato sauce, or anything complicated! etc. Thicken with oatmeal. - I drink kefir with antibiotics as a way of stopping antibiotic related diarrhea (I have been on antibiotics for three years now.) Good luck! [ more ]
wiggles i started this regimen yesterday and this morning im straining with crazy urgency. any ideas? [ more ]
Jan Dollar Makes sense. Xifaxan is nice because it is basically topical, with little to no systemic effect, so you don't have to concern yourself about side effects. But, it is not universally effective (and more often than not, for persistent pouchitis, a combination with another antibiotic is more effective). My point is not to make you think it will not work in advance, but that if things go sideways, it probably is not because the antibiotic is making things worse, but that it is not effective... [ more ]
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J-Pouch ForumsHelp! Need advice now!
UTI or Regular Healing Pain??
M mom2panda
mom2panda Thanks all. I think it must have been one of those random pain things. Or, I could have been ovulating on top of everything else. I do get pain when I ovulate, but this seemed different. Anyway, today = no pain. Weird. If it comes back, I'll go for the urine test. In the meantime, I'll get some cranberry juice or tablets. Thanks again! [ more ]
skn69 Can I add something? Whenever they did pouch surgery on me they catheterized me and I always had problems for a couple of weeks post op...occasional leaky bladder (would stand up and the urine would dribble out), mild bleeding occasionally, irritated urethera, mild bladder discomfort and lower back pain. Usually an increase in fluid intake + a glass or 2 or cranberry juice was enough to put pay to most of it. They always told me it came from the catheter irritating the area and that mild... [ more ]
Jan Dollar This isn't sounding like a UTI, a simple urinalysis could rule it out, and quicker than a urine culture. If the bacteria or cell count was too high, then a culture would be the next step. It is pretty common to have odd pains following a big surgery like this. Lots of nerves getting cut and having to regrow. In the meantime, those signals can be jumbled up on the way to the brain. Especially when the discomfort is related to ostomy activity or other gut sensations, this seems more likely. [ more ]
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J-Pouch ForumsGeneral Discussion
11 years. First concerning problem with pouch.
S SFG25
SFG25 Thank you so much. I'll do a little more research and see what I find. Definitely will be checking in with doctor. Thanks for responding so quickly. I'm glad I stumbled upon this site with my searches and I plan on visiting with regularity now. Hope to get to know all of you a little better and also learn more about myself and the misfortunes that all of us have been dealt. Thanks again. [ more ]
Jan Dollar From what you describe, this sounds more like an anorectal problem, and less likely pouchitis. But, it could be a mild case of either or both. If it is anorectal, I'd be suspecting cuffitis (pretty mild, since there is no bleeding), stricture, or mild fissure. Hydrocortisone or Canasa suppositories could be prescribed. Dilation, if there is a stricture. And yes, symptoms of stricture can come on rapidly, even though it forms gradually, because once you reach a certain "tipping point" of... [ more ]
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J-Pouch ForumsHelp! Need advice now!
New bleeding after more than a year
G Gutless♥
Gutless♥ Thanks Jan- I was just reading through some of the other posts and I am beginning to get the same feeling. I'll call the doc tomorrow and see what he will do for me. At least I'll be doing something instead of hoping it just goes away. [ more ]
Jan Dollar Sounds like cuffitis. Bleeding is almost exclusive to cuffitis. Occasionally it occurs with pouchitis. I'd call the doc and see about getting a prescription for Canasa suppositories. Usually this is not serious, but it can get bad if not treated. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
spasms
W wiggles
wiggles thanks jan, how do you get your cuffitis under control? i just wish the meds ive been trying would give some sign of relief. ive been living on ensure which passes easily but yesterday i had a small bowl of well boiled with lots of water white rice and i strained and pushed to empty all night. i just want to be able to leave the house once in a while. [ more ]
Jan Dollar Yes, when my cuffitis is active, I get these frequently, like every few minutes. But, they can also be caused by pouchitis, IPS, and adaptation. It can take a year or more for nerves to regenerate during the healing process, and that is why sensations and sensitivity can be all over the place. Even when you are done healing, things can never quite be the same. I think it is mostly a matter of degree when it is associated with pathology. Like it mentions in the video, they don't necessarily... [ more ]
wiggles could cuffitis cause these symptoms? the last few days i get these spasms im talking about every 15 to 30 minutes all day and they are very uncomfortable but when they fade there is absolutely no pain or discomfort at all. [ more ]
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J-Pouch ForumsGeneral Discussion
Anti-depressants for spasms...
MT Mary Tara
Spooky Amytriptiline is one of the "older" types of antidepressants, but does have pain relieving properties and is often prescribed for chronic pain patients, so it may be of benefit to you. One thing, however: it's a sedative so you'd best take it at bedtime. Beyond that, I'm not sure how long it takes to work or how long you'd have to stay on it. But if spasms are causing you pain and interferring with your sleep, it might be worth a shot. That being said, there are other types of antispasmodic... [ more ]
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J-Pouch ForumsGeneral Discussion
Is tincture of opium the next step?
BarbieGBarbieG
Stone I live in the valley but the bay area would be fine like fremont dublin anywhere around there even if i have to go across the bay bridge . I just need a doctor who understands me and listens to my situation. If anyone of u guys no a understanding doctor that would prescribe me what i need to take care of my bm,s please let me know thank you all. [ more ]
Stone Im in the valley but the bay area would be fine like fremont dublin anywhere around there even if i have to go across the bay bridge. I don't have kaiser just regular insurance. I just need to have a understanding doctor that would prescribe me what i need to take care of my bm,s. Thank you Jan [ more ]
Stone I live in the valley but the bay area would be fine like fremont dublin anywhere around there even if i have to go across the bay bridge. I would love to have a understanding doctor that would prescribe me what i need. I had my surgery at center for colorectal surgery mt. Zion. In san francisco. Thank you Jan ur so blessed for helping me and many others. My wife says thank you too. [ more ]
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J-Pouch ForumsGeneral Discussion
Yogurt
CTBarristerCTBarrister
CTBarrister I just bought a brand new product called Dahlicious Aliv. It is a sugar free (i.e. "no sugar added" beyond what is in the strawberries), gluten free probiotic drink containing 50 billion probiotics in a 3.92 ounce bottle. 70 calories per serving. I could not find nutritional info online that I could post, but did find this on their Facebook page: https://www.facebook.com/DAHli....Lassi/photos_stream It comes in 3 varieties, "women's health", "immune health", and digestive health." 4 bottles... [ more ]
SallyJPouch CTBarrister, your information is valuable to me. In light of the fact that you are on antibiotics one week and then off, it is invaluable to you, and that is good information for all of us. Thank you for your many contributions and I am sorry you are having such difficulty. SallyJPouch [ more ]
CTBarrister Just an update on some additional products I tried: Coach Farm Yo-Goat Cultured Goat Milk. Product description: http://www.coachfarmstore.com/yogoat-12-pa12.html This one tastes pretty good, can't really find any info on the amount of live cultures in it. KeVita Sparkling Probiotic Coconut Water. Nutritional info: http://kevita.com/product-family/coconut/ This one actually is not a yogurt but rather sparkling probiotic coconut water. It's got an unusual taste but not bad. Main positive with... [ more ]
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J-Pouch ForumsGeneral Discussion
1 month post j pouch pain. Help
DN D. Nocerino
TE Marie I have a hand held sprayer, instead of a bidet or bidet seat. For $50 my husband installed it to the toilets water source. It's a kitchen sprayer with a long cord. I bought the kit for it at a company called Diabeties and More, or something like that, on the internet. It took him 10 minutes to install it. We are south for the winter and he installed one in our condo for me. When we leave he'll just put the water source back to the way it was. There are also hand held Bidet sprayers on... [ more ]
bootstrap What everyone else said! Also: baby wipes seem to work for me just as well as a bidet or other water/bath options... they are cooling/soothing on the bum when you have to wipe and make sure to get you nice and clean to help prevent further butt burn. I always have a couple in my purse in case I'm caught out and about. Try BRAT foods: banana, rice, applesauce, toast. White carbs: pasta, bread, instant mashed potatoes. Cheese, peanut butter... All these foods will slow your digestive system... [ more ]
Dog You say you are a student, so I'm going to guess college. If you are drinking alcohol, you might want to stop for a bit. Just a guess based on how I was a student in college. A bidet, if you can afford it, is a good option. If not, a bath will help. If you only have a shower, consider getting a sitz bath. That helped me immensely with butt burn. The itching will drive you slowly insane. Luckily, I think that will taper off within the next couple of weeks. I haven't had butt itch since a few... [ more ]
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J-Pouch ForumsGeneral Discussion
i always told my wife they'd find great meds right after i lose my colon.
W wiggles
mgmt10 In my opinion there are no "great" meds to treat UC. I feel I am so much better off with my jpouch. To me it's such a huge weight off my shoulders to be off those awful drugs. [ more ]
Jan Dollar Yeah, I "love" it when they say it is a new drug, when it really is the same ole thing with a fancy name, and price tag! There's no money in selling prednisone, so they have to come up with new ways to make a profit. Of course, they are actually trying to find cures. They simply are elusive. So far, nothing beats steroids for inducing a remission, which is fine, but not a cure or even a maintenance drug. But, there are doctors out there who will prescribe it that way (shame on them...). As... [ more ]
wiggles hope i can be away from all the uc drugs and gi visits soon. glad to hear you are though. thanks for the explanation jan. [ more ]
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J-Pouch ForumsGeneral Discussion
It's here - surgery tomorrow
U UCWarrior2010
NewLifer Maybe we should talk and be buddies. I had my J pouch built on Jan 15th. I had a blockage on the 21st and had to go back to the hospital but am home now. Walking some and antipating staples and road coming out on Tuesday. I know that will very painful but try to say it is just one more step closer to the takedown. My takedown should be first or second week of April. I am terrified of the recovery process, leaking, butt burn, embarrassment. How are you feeling ? Do you have someone at home... [ more ]
Pluot Wow Dog, diagnosis to takedown in less than a year... and I thought I was fast! [ more ]
Dog If they just made the J-Pouch, you should expect sharp, random pains for days. . .I think I had them up to 4 weeks. They became less frequent and less painful over time. I had no idea what a "major" surgery was until they created a J-Pouch. Go slow, go easy, and be patient with yourself. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cramping
C Chrislee
Chrislee She did start her period. However she is still cramping and she says that sometimes it will last for twenty minutes. We have gone to see her pediatrician, who is not sure what is going on.She recommended going to our gastroenterologist. Everything seems to be normal except for the periodic cramping. [ more ]
skn69 Any specific dietary changes? Change in physical activity (new sports or exercise plans?), new drugs or meds that she is taking or stopped taking? A change in the fluids that she drinks? (more carbonated drinks?)...unless there is a direct relation to one of the above or something else that I didn't mention then I agree with Jan...pain is a symptom of something...persistent pain is a symptom of something persistant (doctor told me that one)...and it needs checking out. Sharon [ more ]
Jan Dollar Sounds like something bad enough to see the doctor. Could be she is premenstrual, but I would not want to assume that. Pain is a sign, and when it is persistent, it should be explored. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Gatorade ingredients
kathy smithkathy smith
Former Member ❤️
wiggles im living on ensure. hope im not causing problems but for now i need them. [ more ]
Spooky Despite the fact that both my GI and dietician pumped sports drinks like they were going out of style, I stopped drinking Gatorade and other sports drinks a few years ago because I became leery of the sugar/dyes. I had heard about this ingredient in Mountain Dew but I didn't realize it was in Gatorade as well. This is yet another reason I'm glad I stopped putting that crap in my body. [ more ]
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J-Pouch ForumsPouchitis
dehydrated and annoyed
S Sara1986
Allison Coconut water helps me the most when I'm dehydrated and it's easy to find. [ more ]
RyanM sara1986: Well all I can say is... I had a jpouch done in 2001 and for the last many years I've dealt with dehydration and malabsorbtion. My concerns and thoughts are with you as the research continues. Good old water is the best. But I have more trouble with dehydration when I'm in an infection cycle. So keep an eye on that. I do pretty good during my "good" peroid watching fluid intake. Watch the muscle cramps and other things that you will become acquainted with. Best of luck. [ more ]
ucfree Lookup Vitalyte. I found it from another forum and I swear by it. Very low sugars and extremely good at re-hydration. [ more ]
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J-Pouch ForumsGeneral Discussion
Stomach Virus
C CB1971
Jan Dollar The hand sanitizers are good for most things, but not Norovirus, at least not good enough (better than nothing however!). http://www.cdc.gov/norovirus/ I was instructed to sing "Twinkle Twinkle Little Star" to time hand washing. But, I am lazy and seldom do. Jan [ more ]
kathy smith When I'm traveling I always start Pepto Bismal about a week before leaving and continue taking it until I return home. Jan - it's good to know that alcohol based hand sanitizers aren't effective. I was told that awhile ago and I've been doing the 'happy birthday twice' hand washing ever since. ESPECIALLY when I go into the hospital. [And don't get me started on the hospital personnel shaking my hand or inserting a needle withOUT washing their hands or wearing gloves. Two different needle... [ more ]
Jan Dollar I just saw a feature on the morning news stating that the latest strain of the Norovirus is especially virulent, highly contagious, and very swift (very short incubation). Past strains werevery contagious too, but I guess this is even worse. Of course, the very young, very old, and those susceptible to dehydration suffer the most. What s unique about Noroviruses is that they can be passed through contact or in food, so they are a source of food poisoning. Also, alcohol based hand gels are... [ more ]
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J-Pouch ForumsGeneral Discussion
Sensa & JPouches?
M msh98991
suebear I'm with Kathy. Also, gimmicks never hold long term results. Best to moderate and practice behavioral changes. Sue [ more ]
kathy smith I am always leery of the 'too good to be true' claims. A quick search and I found this and this . I think the only real way to lose weight is to match the number of calories with the amount of exertion one performs during a day. So I think if you just start reducing portion sizes and exercising you should be good to go. kathy [ more ]
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J-Pouch ForumsGeneral Discussion
Irritable pouch syndrome in the state of CA- elligiable for disability?
D DAS 2680
fq glad to hear you have decided what to do. Just wanted to say i had a friend in a similar situation in CA with disability. the disability insurance company is very strict and will outright deny any claim not supported by medical evidence/documentation. my friend's family dr. submitted documentation and it was denied. they specifically wanted "clinical evidence" (test reports, MRI, etc) that showed she was actually disabled from performing her job duties . then they have an in-house... [ more ]
chiromancer There are two ways to approach going to an ostomy. One is disconnect J pouch and create end ileo leaving J pouch in place. The other is to excise the pouch and create an end ileo. The first option is what I tried, pretty simple surgery but it didnt work well due to excretions from the disconnected pouch. I had the pouch excised in mid December. I am pretty happy so far. Probably empty maybe 4 times a day and once during the night. It takes only a minute or two. As far as farting/noise I dont... [ more ]
Subzeromambo I emptied my ostomy bag only four times a day. I used a one-piece Coloplast. Mine did not fart but I think my kids and I would have had a good laugh over it! Mine survived rock climbing, swimming and white water kayaking without any problem. Sometimes I miss it, especially when I have butt burn. I have been without an ostomy for seven months. [ more ]
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J-Pouch ForumsGeneral Discussion
Nightime incontinence - Updated treatments?
SC Scott Cannon
GregC. I was suffering with same problem and after a few months of agony I discovered that neuron tin prescribed for neuropathy was causing the incontinence. It's a side effect that none of my Docs were aware of. I had to discover it myself using the Internet. Maybe something you're taking is causing your problem as well. Worth checking. [ more ]
kathy smith I wonder if the Xanax is making you too relaxed at night, thus the incontinence. Could you try going to 1/2 a tab every other day and then eliminating that one? Have you tried either lomotil or imodium lately? I wonder if it would still cause the same symtoms. kathy [ more ]
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J-Pouch ForumsOstomy & Skin
Can Apple Or Brown Bread Cause A Blockage?
Steven MusterSteven Muster
Steven Muster Thanks Selma. Useful advice! Drinking after eating is something I was told by the stoma nurse, but easily missed out. I'll certainly do that after anything dry as you suggested. [ more ]
Selma I have blockages after tough corn on the cob, then not enough water with it. Ended up in the hospital with that one and ng tube for four days. I also had problems with a dry pork chop. I massaged the spot since I know where it is now, narrowing due to scar tissue. I just make sure I chew really well and drink water with anything that is dry including sandwiches. [ more ]
skn69 You are welcome...Bet you that we have as much if not more snow than you! Just got the most snow ever here in Paris (or next to it!)...the city is paralyzed! Good luck on your end and chew those peaches well! Sharon [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Hydrosalpinx?
C commandz
meghspd congratulations Commandz so Happy for you .. wish you the best ! [ more ]
commandz Just an update, even with the hyrdosalphix and IVF, I have gotten pregnant and 8 weeks along with no other surgery for the hydro's, so excited! [ more ]
vanessavy I just got told my fluid build up that everyone thought needed to be drained was this. I guess my tube and ovary needs to come out and I want it gone but my Gyno seems nervous about doing surgery on me with a different anatomy. I have read people have had hysterectomies through the vagina. Can't this be done similar? Anyone have surgery and do fine? I rather have this sucker yanked since it causes me pain. I am child-free and had a tubal and novasure in 2006 so I don't care if I keep ovaries... [ more ]
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J-Pouch ForumsGeneral Discussion
the question i should have asked all along.
W wiggles
Scott F When I have pouchitis I get a bit more superstitious about food. I eat less dairy, and I cut back on already-limited evening snacks. I'm not sure that it makes much difference, but I feel like I'm doing something. [ more ]
Jan Dollar I do. That does not mean that foods do not have an impact. They do. I just deal with it, or eat less of a problematic food. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Access to Restroom for people with IBD - defeated
D Dog
CTBarrister Jenmystique, I think your post underscores the point the author of the article was trying to make, which is that forced legalization of bathrooms in retail stores subjects retailers to persons with fraudulent or criminal intentions. The counterargument to this is that video surveillance of the store, although possibly costly, can serve as an effective deterrent mechanism and a helpful investigatory tool to sort out the fakers from people who really need to use the bathroom. I am an attorney... [ more ]
Jenmystique We were suspecting she may be up to something since when you open the door, look to the right, see a restroom sink at the end of the walkway. Look to the left, see an office. She was coming from the office when I opened the door and found her. BUT--I like to give the benefit of the doubt and maybe she didn't see the washroom sink. Either way, in the time it took her to "search" for a potty, plus the time she argued with me, she could have already been in the bathroom at the department store. [ more ]
kathy smith And often those who protest loudest have the least need for the facility. I wouldn't have believed that woman in the backroom for a minute. She was up to something IMO. The law is made for those who truly need a restroom, like, right now. Every store does not have one or a functioning one. kathy [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
How long should I wait?...
J JessGoguen
JessGoguen Hazahh, Had my 7 week follow up and the doc says i can begin trying tonight to get pregnant! I am super excited. The only thing he wants me to change is try VSL #3. I am over the mooooooon!!!!!! [ more ]
JillM I was told 1 year by most of my drs. However, when I had my pouch out, my surgeon told me that they want it to have been a year between last surgery and DELIVERY, so theoretically you could try 3 months post op. Personally, I'd stick to the 6-12 months window. Just because you don't know how pregnancy will affect you. My first pregnancy I felt fine (aside from a near total obstruction) but my second I felt yucky pretty much the whole time (but no obstruction). I wasn't nauseous, but I just... [ more ]
Breezie I've usually heard from six months to a year as a general guideline, but it really depends on how sick you were going in and the medications you were/are on, etc. Also to be considered is how well you recover and adapt. Just look around at the posts on this site and you'll see some people who breeze through adapting after takedown and others who have a much longer learning curve and need extra time. Best case scenario, you had surgery from FAP or during UC remission, were/are on no... [ more ]
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J-Pouch ForumsGeneral Discussion
guy question.
W wiggles
Dog It's been a few years since my takedown, but as I recall, yes. I also had a sharp pain about half way between my anus and my tail bone. The spasm near my testicles eventually went away. . .my theory was that things were stretching and learning their new position. If the pain persists, a quick call to your doctor might be in order. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Food questions - pooping hurts!
fqfq
Jan Dollar I tried cutting off eating early in the evening, and it actually made things worse. My gut just churned and cramped, and of course, I would lay in bed thinking about my next meal! Plus, more gas was generated, sending me to the bathroom repeatedly. I eat late lots of times, but try not to eat pizza just before bed. Many people say a small snack settles things for them. Over the years I don't know if my pouch has adapted more, or I have adapted more. Either way, I have made peace with my gut,... [ more ]
Dog I might be lucky. I'm posting this for the benefit of others who might stumble across this post that are considering a JPouch. I eat up to the moment I go to bed. Sometimes I get up 1 or 2 times at night for a BM, but about 1/2 the time, I sleep right through until morning. For me, having a J-Pouch is not much different from my old colon-rectum set up. [ more ]
Mark N I am 6 years since takedown and do pretty well but I cut off food way before 8PM to stop BMs at night dusturbing sleep. We eat dinnner around 3PM and have snack, very light meal around 5 or 6 PM and at later mels I do not eat much fiber like veggies, or beans, cabbagte, etc. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
longer term question
R Ro
Dog I think butt burn/butt itch come and go. I was having some odd sensations 2 years post takedown. they wanted to do a pouch scope to look around. Turns out, nothing was wrong, just some odd sensations. As far as your expectations, you might want to reset them. Reading on this board, you will commonly just see posts from people that are having issues. Me, I'm 3 years post take down and my BM's average 2-3 a day, with 0 to 2 at night, depending on how much junk food I was eating while watching... [ more ]
Ro thank you Marianne, that is good to know. i am a male, so i dont have that going on. but the way you worded that makes sense. CT, that is interesting. i havent quite had that feeling you describe. it really just feels swollen or irritated. thank you for your input, i know i need to go in soon anyways, so that is also good information. very good point about expecting pouchitis to be as bad as UC was! i didnt think about that at all! scott, you also have some very good points. i had never had... [ more ]
Scott F I can think of a couple of possibilities: 1) Some folks with inflammatory bowel disease also have irritable bowel syndrome. It's unpredictable, and colectomy doesn't cure it. 2) Some pouch issues can come and go. Pouchitis isn't a simple infection "cured" by antibiotics, so it can wax and wane. That's certainly been my experience. 3) Some dietary changes are very subtly. Consider (for example) whether the volume of food you eat may have changed. --Scott [ more ]
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J-Pouch ForumsGeneral Discussion
Airport security
J jax17
Dog I wanted security to stop me when I had my ostomy. I was hoping for this exchange. "Sir, what's in the bag?" "Hmm, oh just some crap I carry around." "Do you mind if we have a look?" "Seriously? Well, if you must. . ." [ more ]
liz11 I've been through all sorts of scanners the past several years with ostomies and never until recently ever told anyone or had a patdown because of one. I always just empty the bag right before going through security. During the holidays recently I went through xray full body scans at two different US airports. Each time, I got pulled aside and pat down by a female TSA agent. The first one talked through the pat down, starting at my head, shoulders, etc.. Then when she was nearing the... [ more ]
dawn58 I have traveled all over the United States and Europe. Never mentioned it and they never asked. Have been through all different types of scanners. [ more ]
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J-Pouch ForumsGeneral Discussion
future JPouch Care/exams
J Jenmystique
Jenmystique I mean the lady assistant student did NOT have a goofy grin. I mistyped. [ more ]
Jenmystique I had the barium test last week and no leaks detected!!! And one day I'll get over my prudishness.. maybe. I was uncomfortable because there was a doctor in there still in training learning from the radiologist MD. The student had this big goofy grin on his face that was just offsetting. I think the radiologist picked up on me being uncomfortable because he sent him out of the room for the actual test. The lady assisting him also had a student with her but that student was wearing a goofy... [ more ]
kathy smith I agree with jeane - if you had dyplasia then annual scopes are indicated. I am one of the very bad scope patients. I've had 3 scopes in 22 years. I wouldn't advise anyone to follow my example. kathy [ more ]
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J-Pouch ForumsHelp! Need advice now!
Post op nerve pain, possibly shingles?
P Pluot
TE Marie If you don't know it or not there is a shingles vaccine for those of us that had chicken pox. My insurance wouldn't pay for it until I was 60. I paid $225 for it. My Internist wrote the prescription and someone at Walgreens gave me the shot. Both of my parents had shingles and I was scared of getting it on top of everything else. A lady in the doctor's waiting room said she's had shingles and it was well worth paying for the shot to not get it. [ more ]
Becky Boo I had a bit of numbness and pain near my belly button as well, post op, and was told the same thing by my surgeon -- cut nerves, and it would subside over time. It did. I had a spot of numbness for a long time, but the pain went away fairly quickly (maybe a few weeks?). The pain I experienced was different than you describe, however. No pain meds necessary -- more like an itching/burning that was quick and didn't last -- more like pin *****s than an iron. So perhaps you have the same thing,... [ more ]
mgmt10 I don't recall having any burning sensation after surgery and I would think there would be a rash if it were shingles. Definately possible that its your nerves there reacting. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
It's been 13 years.....hear that? 13!!
nocolon-2000nocolon-2000
Rick 1971 Amen to nocolon-2000! I am 12 years post op (1/2001) and life has been wonderful ever since. I am having some slight issues over the last couple weeks, which I why I am back visiting the site. I have been free of meds and accidents after years of being held hostage and if I can do it, so can others. In the last few years I have run a half ironman and run to marathons in under 3 hours. It did take time to adjust (post pop), but a positive attitude goes a long way!!! [ more ]
UCWarrior2010 I have my first surgery scheduled for this Friday and reading your post makes me feel a little more optimistic. Thanks for sharing your success story!! [ more ]
nocolon-2000 wiggles, I take Culturelle as well. I also take the generic for Imuran as I am re-dx'd with Crohns. I avoid most fibers and just go when I feel the urge. I don't count. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Swallowed a Coin!
LaurelNicLaurelNic
CTBarrister So it took 48 hours to do the tour and find that your son had no strictures? I guess that quarter was a good luck charm after all. I think your son will have to keep it, maybe even wear it around his neck as a pseudo St. Christopher medal. As for George Washington, he had a rough winter trip in 1777-78, but this was probably a little wilder. Anyway, it is great news! But I hope the news does not embolden him to start placing quarters in his lips or mouth whenever he decides to clean up the... [ more ]
Jan Dollar Great news! An unrecommended experiment that proves there are NO strictures! Jan [ more ]
LaurelNic Breathing a huge sigh of relief!!! The quarter made its exit with no problems. I will actually sleep tonight! Thanks for your helpful responses! [ more ]
See all 11 replies...
J-Pouch ForumsOstomy & Skin
Will have ostomy surgery January 4th
S Suzyofnyc
Lynne2 Glad to hear it, Suzy! Thanks for keeping us updated. Best wishes for continued healing and may 2013 be a year full of health and happiness for you! [ more ]
Suzyofnyc Well, I'm finally back among the living after my ostomy surgery! Drs. Joel Bauer & Steven Gorfine did a great job, and everyone at Mt. Sinai have been great. I didn't understand or appreciate how muh one needs to work with a good Ostomy Nurse, but once I realized the kind of support they give (supply samples, tricks, tips, moral support), I am doing pretty well. I would say (of course!) the hardest thing is doing your own barrier change and having it hold, without leaks for a few days. [ more ]
itsnotsherry Great news!! [ more ]
See all 24 replies...
J-Pouch ForumsOstomy & Skin
Deodorant tablets
M Maximaus
Mickshell I use a great product, I believe it came from America, it is called Na'scent, I get it from my supplier in the uk. I have tried numerous things and this is the only one that has actually worked, when I change my bag I put in 6 drops and that usully lasts the day. It does say you should put drops in everytime you empty , but I find that is not necessary. Shelly x [ more ]
Suzyofnyc My Ostomy Nurse suggested dropping an Altoid into your bag when emptying. Not quite "minty fresh," but pretty effective! [ more ]
ucfree I searched for over 3 years for a solution to the smell and gas .... tried tabs, liquids etc. Nothing worked well. Devrom is the answer. Look it up. Take 2 capsules a few times a day. Smell is GONE. I travel with ease now [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
instant messaging
W wiggles
TE Marie You can tell who is on if you go to the main menu, it lists our ID's from left to right up below the sites logo. I can see you are on now wiggles. [ more ]
wiggles ok. thanks so much. [ more ]
Spooky wiggles, if we did have IM, I would prefer that it be an "opt in" feature. To be honest, I check this site as much as I can, which currently is about 3-4 times per week, but there are days at a stretch where I'm just not able to get online long enough to read the recent posts, and if I had IM I'd feel bad "ignoring" people that I couldn't respond to immediately. Jan's suggestion of using the chat is a good idea. Maybe you could PM those you wish to speak to and set up a mutual time to meet? [ more ]
See all 5 replies...

Join Us!

Founder, Creative Director & Web Master

William J. Johnson
bjohnson@j-pouch.org

Bill Johnson founded the J-Pouch Group in 1997.

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

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