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J-Pouch ForumsGeneral Discussion
Challenges after 4 surgeries.
HemingwayHemingway
Holly M Ernest: I am so sorry to hear you are in the hospital. Prayers are with you my friend. Keep us all posted and hope they find out what is wrong with you and soon. [ more ]
TE Marie I'm glad you are there, something is very wrong with a 7 count. Please have them test your poo for a c-diff infection. I just read your post regarding cipro. I've had c-diff before and they immediately took me off of cipro. Also a yeast infection can be caused by antibiotics. They give the ladies a prescription for one pill for yeast infections so I bet that's all you'd need too. I have no idea how you were even staying awake to go to the restroom with that count. I had to call 911 for my... [ more ]
Hemingway Well, I am currently in the Hospital. ER said my hemoglobin was down to 7 (12 is the desired number) so that explains many problems (weakness, exhaustion, insomnia, confusion). CT scan shows all normal. A scope, most likely, will be done in the AM. We will find out if it is the fissure or a different problem. A fellow IBD sufferer suggested having a test done my thyroid since it can cause autoimmune problems. I'll ask the doc to run some. TE Marie, thank you for the insight on SSDI. Everyone... [ more ]
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J-Pouch ForumsGeneral Discussion
unintentional overdose
skn69skn69
TE Marie This keeps getting worse doesn't it. I think I remember if you go to the country provided doctors it's first come, like a waiting in line set up. Is that right? Do you need antibiotics now? [ more ]
skn69 It is called Humex...like I said it is 5xs the U.S. price...As for nose stuff (or stuffy noses???!!!) they have a ton of sinus sprays (they love shoving things up their noses!) especially sea-water nasal sprays...But they don't help much if it is clogged up...they do on the other hand have a fabulous choice of cough syurps...all codine based and non prescription! Behind the counter none the less but still availible...go figure. ps...I have been cut off from my health insurance so for now I... [ more ]
Subzeromambo French pharmacies have more cures for nasal congestion than we do in the states. My French is very bad but just pointing to my nose and making a very stuffy sound was enough to have people running around and putting together day time powders packets you mix with hot water and a sleepy-time night version of the same thing. I wish I remembered the name! [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch Failure? Perm End Ileo?
KPKP
skn69 Good Luck Kp, I am just so relieved for you that you finally have some answers...let this be the end of the line for surgeries! Sharon [ more ]
KP I totally agree with both of you. The only thing I've heard the surgery called so far is a "pouch revision". I know it's for afferent limb syndrome and to cut out the prolapse. I'm hopeful that the surgery won't be too invasive, but I won't be shocked if it is. The quicker I have the surgery, the faster I get back to living a healthy life. Well, I hope so at least. I'm still waiting for the surgeon to go through the operating notes and pathology tests from my previous surgeries. [ more ]
liz11 KP.. sorry to hear you need another surgery but great news you have an answer. Your CC and Dr. Shen story sounds very similar to my initial time there. One reason I stick around on this forum is to encourage people who are really suffering.. even if just early after takedown (I had problems from day #1 after takedown)to go get help from the experts at CC. There really can be other things wrong other than the token diagnoses of just pouchitis and cuffitis. Also.. completely agree with your#1... [ more ]
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J-Pouch ForumsGeneral Discussion
Having Trouble With Night Time Incontinence
WJ Westcoast Joe
JeffDC My record was two on the same night. Luckily, my doc has never found pouchitis. I have noticed that night poops happen when one of two things happen: 1. I have a really bad night and am too exhausted to listen to the signals to wake up. 2. I am really tired (not necessarily at #1 levels) and sleep on my back. The times I wake up and am aware of the poop, I am on my back. I generally do not take much immodium or pepto bismol, which could probably help at times. [ more ]
Westcoast Joe Thanks everyone for your thoughts. I took some Imodium last night and did not have a problem. Hopefully it has gone back to normal. [ more ]
JJA Nighttime incontinence is always a surefire sign of pouchitis for me. Hopefully the right antibiotics will clear it up. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Is it possible to get Pouchitis before your reversal?
P PB
Jan Dollar Yeesh! I'd be begging for it to be drained months ago... Jan [ more ]
PB Hi Jan, Thanks for your reply. I shall definitely ask. I have a golf ball sized haematoma behind the pouch. It came from a bleed I had after the pouch creation operation. Annoyingly it wasn't spotted at the time, became a hematoma and I only discovered it myself when I ended up in hospital months later after it became infected. My surgeon has so far wanted to give it time to degrade on it's own accord. I frequently have scans to check it, and it is reducing, but just at a painfully slow... [ more ]
Jan Dollar Short answer, yes, and a prolonged diversion could even cause it. The blood could easily be from cuffitis though. Something to ask about with your next appointment. What is the reason for such a long delay for takedown? Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Butt burn
CH colleen h
jeane Warm baths and extra strength desitin or cocoa butter. [ more ]
kathy smith Warm baths/showers after bowel movements. I always liked Nupercainal - it's in the Preparation H section of drug stores. It's soothing going on. The active ingredient in Dibucane which your drug store might carry. A quick internet search indicates that Nupercainal is sold at Walgreens. There are many other ointments and salves to try. Maybe just get an assortment and see which one works best for your daughter. I hope she finds relief very soon. kathy [ more ]
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J-Pouch ForumsGeneral Discussion
What do you take?
P pninas
pninas Hi Sue - I have the greatest admiration for you, doing the multi-day hike! Wonderful to hear what some of us are capable of doing after this surgery. It must have definitely been worth taking all the Lomotil! [ more ]
pninas Thanks Kathy. Good to know that Lomotil doesn't seem to have a real narcotic effect. Interesting what happens with prescriptions and those that don't need a prescription. Think I remember needing a prescription for Imodium when travelling to Mexico many many years ago. I'll try not to get a black tongue from the Pepto Bismol! [ more ]
suebear The only time I have noticed the narcotic effect of lomotil was after taking 72 pills (8 per day), on a 9-day, 100+ mile hiking trip. It didn't affect me during the hike, but stopping cold turkey after the hike left me exhausted. I'd do it again in a minute in order to do another multi-day hike. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Cola fix for obstructions
TE MarieTE Marie
TE Marie darealfoo, Thanks for the link, very intesting! [ more ]
skn69 They do Cola enemas too...not my cup of tea to be quite honest but I have done pouch lavage with sterilised sea water when I was having problems...it helped some (or maybe it didn't!)... I use hot tea with lemon, prune or grape juice and any other typical 'liquid plummer' for guts... Sharon Just beware...A partial blockage might give with the cola but a full blown occlusion may not like it at all. [ more ]
darealfoo http://www.ncbi.nlm.nih.gov/pm.../pdf/kjim-22-300.pdf Interesting read to those seeking a "coke" therapy [ more ]
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J-Pouch ForumsGeneral Discussion
itchy scaly skin on nose?
G Guest
rustyskyline I had this problem with itchy scaly skin on my nose as well. I went to one dermatologist after another most of whom suggested I try changing shampoos, soaps, after shave or other such nonsense. Finally I went to one that prescribed Desonide lotion (.05%). About 24 hours after applying that stuff, the scaling and itching was gone. It's not gone forever though, it comes back every few months and is usually associated with a flare up of my pouchitis. So now, I just throw some lotion on my nose... [ more ]
Midnight Lady oh.. he told me to STAY FAR FAR away from cortisone creams. Cortisone has it's own problems. (I had been to my primary care doc a few months prior and he gave me the cortisone cream, but I was leery about using it.. and rightly so.) [ more ]
Midnight Lady I spent all summer changing up laundry detergents, buying new eye shadows, mascaras, cleaning make up brushes more than normal, buying all new make up brushes, buying different and more mild face cleansers and lotions, etc. etc. while thinking all along.. what if it's related to the many years of UC (which.. is now gone due to having a jpouch) but complicated a bit by a later diagnoses of chron's (which I am for the most part, ignoring this diagnoses, except to think, that yeah, it could... [ more ]
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J-Pouch ForumsGeneral Discussion
C-diff...Jan?
mgmt10mgmt10
TE Marie Thank you for the update Marianne. [ more ]
mgmt10 Thank you all. We were with her all day. She is in liver and kidney failure. We have hospice for her now and she is on a morphine drip to keep her comfortable. We are a big close knit family so she will be surrounded with people who love her until she passes. The cancer was spreading quickly but it was this c diff infection that just pushed her over the edge. Crazy how someone can go down hill so quickly....just Friday she was playing cards with everyone. [ more ]
Donna H Oh, that makes me so sad. I remember taking my two boys to say goodbye to my father and I still become tearful. It is not easy but letting go and knowing she will be out of her misery is very consoling. I am sure she has angels waiting for her with open arms. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch scope
Holly MHolly M
Holly M Thank you!!! I will call the doc in the morning. You are a wealth of info and I appreciate it so much. [ more ]
CTBarrister I would try flagyl, xifaxin and augmentin, those 3 are, along with cipro, the "Fantastic 4". [ more ]
Holly M The results came back from pouch scope and doc said everything looked good. I am wondering if being on cipro for awhile cleared everything up or would something still show up if pouchitis was present? I am back on cipro but think it is time to start on something else it doesn't seem to be working so well anymore. I will go back and check past posts and see which rotation CT recommends. [ more ]
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J-Pouch ForumsGeneral Discussion
Adapting to Food is so Hard!
fqfq
Megan I lived on mashed potatoes and scrambled eggs for 6 months before graduating to more solid foods... I couldn't tolerate meat or veggies for a year or more. I know this doesn't help much, but at least you know you aren't alone! Hopefully it will start to get better for you soon! [ more ]
wiggles fq, im living on only ensure. i wish i was you. lol [ more ]
suebear It took me a full year of adaption too. If you sense your pain is gas related, I'd take a good look at your diet. I had severe gas early on and had to alter my diet, it worked, until I could safely add those foods back. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Back on Cipro + Flagyl
SpookySpooky
Spooky The GI didn't mention it; he only said there were no ulcers in the pouch but certainly that doesn't rule out an ulcer higher up. [ more ]
CTBarrister Spooky, Has the possibility of a bleeding ulcer been discussed? [ more ]
Spooky The odd thing with me is that the symptoms I'm getting are so intermittent, and I think that is what is puzzling the GI. But the blood is obviously coming from somewhere; you can't have significant bleeding without a source. Hopefully the MRI will shed a little more light on what is going on, although right now I'm still waiting for the hospital to call me back with an appointment date. I really hate waiting. [ more ]
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J-Pouch ForumsGeneral Discussion
immune system
skn69skn69
Manchester I was at the docs to check my sugar levels and I asked him about the flu jab and he just said wait here and just went to the fridge and got one. 2 mins later and I was done. [ more ]
skn69 I will pop in to the pharmacy tomorrow and see if he has any left...Funny thing is that hubby gets the letter with a coupon for a free one and he doesn't even bother to go get it! I could have used it...will try...the epidemic hasn't hit Paris yet so for now there are very few cases (mostly in the south where I am not)...but I work in 3 big schools and am definetly more exposed now than I was over the last 3yrs being a homebody. One of the joys of going back to work. Sharon [ more ]
mgmt10 I cannot believe my hubby and I dodged the flu bullet. Two weeks ago my two kids had a case of confirmed flu. Totally went thru the whole school. I never get a flu shot. I think I got it once back when I was on Remicade. They are still saying here to go ahead and get vaccinated that its not too late. Carry lots of hand sanitizer!! I have a whole collection of pocket size wonderful scented ones! [ more ]
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J-Pouch ForumsGeneral Discussion
Vomiting and liquid stools
AlexisAlexis
Alexis Finally home from hospital. Feeling better but I feel As if my jpouchbis sore from all the diarrhea. Anyone felt this before? Anyway doc did ct scan to check for any inflammation and it came back Negative which I am happy. [ more ]
Dog I had a Giardia infection after hiking and drinking from an unsafe water source. Surprise! I thought Giardia only took up residence in your colon. . .I was wrong. ER visit for fluids and medicine and I was back on my feet in a few days. But yeah, diarrhea with a J-Pouch caused me to dehydrate quickly. [ more ]
CTBarrister It is not the stomach ailment itself that dehydrates you, it is the vomiting and the diarrhea. You lose all those fluids and the J Pouch, unlike the colon which preceded it, simply lacks the size and the power to ever fully assume the colon's function of replenishing bodily fluids via re-absorption. It is simple physics applied to the human body. Take a look at a picture of a colon and a picture of a J Pouch. It's comparing a 10 cylinder engine to a 4 in terms of water re-absorption... [ more ]
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J-Pouch ForumsGeneral Discussion
can prednisone get me into remission?
W wiggles
JJA A good GI will probably suggest ENtocort/Budesonide - a "designer steroid" with fewer side effects than prednisone. [ more ]
Spooky I hate prednisone. Honestly, though, I echo Jan and kathy: you don't want to self-medicate with it. The dosage is crucial and you have to taper down slowly. It's not something I'd even want to begin to figure out on my own. Definitely speak to you doctor. [ more ]
Jan Dollar Yeah, it was 40mg, with a fast taper, after 4 days. Thiswas for an arthritis flare, though. But, Kathy is right, that it is appropriate to bring up the subject of prednisone with your doctor, but he's the one who should decide if it is appropriate to prescribe in your case, and what dosing schedule is. If he does not know how to prescribe prednisone, you've got the wrong doctor! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
how we age?
skn69skn69
JJA Well, after 19 good years with my pouch, chronic pouchitis has reared its ugly head, and only responding marginally to everything they are throwing at it. I teach an aging class, where I am usually optimistic and say, "Aging only happens to us if we are lucky" but with all the pouch stuff I have dealt with the past 2 years, the cynic in me is saying, "Getting old sucks"...It's not for sissies, anyway [ more ]
skn69 Mom's are sweet! Sharon [ more ]
nocolon-2000 A few years after surgery, I started noticing arthritic pain, etc. Thirteen years later, it's still there but under control via meds. My issues with my j-pouch and subsequent Crohns are not going to go away. Since it's an immune system issue, I expect I will continue to have immunity issues. But I try not to think about it. On a funny note, I called my mom today and she said she had heard I was sick. I told her that I have strep throat (or tonsilitis for my non-tonsiled self since the strep... [ more ]
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J-Pouch ForumsGeneral Discussion
got a prescription for vsl3
W wiggles
LionsPride I take the DS, my insurance covers it - well some it. I think 30 day supply at that dose costs me something like $100 give or take. It won't help you unless you're starting from a clean slate. The idea behind any probiotic is that (I'm generalizing before someone jumps on me) bacteria are territorial. By populating the pouch with 'good' bacteria (that doesn't hurt you, and in fact can help) it helps defend 'bad' bacteria from taking root and causing pouchitis. So by that logic, unless you're... [ more ]
TE Marie LionsPride, Are you taking 2 packets of DS daily or regular strength? I'm on a 3 month snow bird vacation and I'm seeing too much of the bedroom and loo. I'm treating my cuffitis but think there's something else. It don't think the c-diff is back but it maybe or it could be pouchitis with cuffitis. I'd like to take a round of flagyl but don't think my Internist or GI's would write me a prescription without seeing them. It's used to treat c-diff and flagyl so if I'm not better by tomorrow I'm... [ more ]
LionsPride I would recommend taking it starting 2-3 days before you stop your antibiotic treatment, but then only if you feel like the antibiotic worked and you're pouch is clean/pouchitis free. I find it's less of a shock to the system and I've had better results when doing that. It takes upwards of 30 days for everything to stabilize, one of the initial issues you might notice are an increase in gas while you adjust, but give yourself 30 days before you stop taking it. DS, or any vsl, does need to be... [ more ]
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J-Pouch ForumsGeneral Discussion
does this look like a good supplement?
G Guest
Nice Nurse one interesting fact I have learned is that xanthan gum is a laxative, or rather it is a key ingredient in laxatives and in gluten free foods. found out the hard way. so be aware. [ more ]
Randi M I also consulted a nutritionist during colitis flares as I was unable to eat anything. I would make these smoothies 2 x a day the product was from a company called metagenics, additionally I would add a scoop of brown rice protein from jarrows, frozen peaches, banana, and either almond or rice milk. http://www.metagenics.com/prod...ltraInflamX-Plus-360 This combo helped me sustain nutrition. I'd still advise you to consult with a nutritionist. [ more ]
Guest no its a protein shake with complete nutrition. vitamins minerals protein calcium potassium l-glutamine and a complete amino acids profile etc. just wondering if it looks pouch friendly... [ more ]
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J-Pouch ForumsGeneral Discussion
Unexpected EUA....maybe crohns
Uc-DanielleUc-Danielle
Uc-Danielle I bet you are steroided out I would be. I hope that something works my wound from my incision infection (transverse scar) was awful. Took forever to heal but he said yesterday that it looks great and I've been bandaid free for 2 1/2 months now! You are right it is reassuring and I needed his typical hug today Bc I was nervous and I didn't get my "there's my girl give a hug" but Sara was there who was in all 3 surgeries which was somewhat assuring. I've been told and have seen that when you... [ more ]
Jan Dollar I know hearing Crohn's must really make you want to scream, since it means no further hope for a cure, but now it is all about management. But, once your shock wears off, you may feel some relief to know that there is a reason for all of this, and perhaps a new direction for treatment will be presented. The focus will be on inducing remission, then maintenance treatment to prolong remission. That is the key. Crohn's does not mean you will lose your pouch (although that is a possibility for... [ more ]
liz11 danielle.. I know .. you really must always see him before they put you out. Its just reassuring. I am sorry to hear what he found but it does maybe explain some things. Dr. Remzi has injected the steroids into my wound a few times. Last time which was just 2weeks ago, I think he went for the super-mega dose because I am still feeling all "steroided out" from them. anyways.. dr. shen and dr. remzi are quite the team.I am sure they will come up with a good plan for you. In fact, my stupid... [ 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 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 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 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 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 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 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 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 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 ]
See all 8 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

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

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