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J-Pouch ForumsGeneral Discussion
Americans: please help me with the universal mandate (Obamacare)
B Blowe
Jilly DGTRACY: the current health care mandates coverage of children THRU age 25. I don't know if the new health care will cut off parental coverage one year earlier. But currently, a child is covered on their parents policy until age 26. Jilly [ more ]
vanessavy It won't as affordable as some think. for people with rare disease it will harm us so I can't back it. I also have a rare disease called F.A.P. Hopefully it is worth the hassle in the end. Good luck to your friend but I wouldn't count on this until it actually happens. Nothing in stone yet. [ more ]
dgtracy Jan, thank you for posting that article to the Obama care facts, currently I'm 24 years old and covered under both of my parents insurance till I'm 25, which is Next April. I will need to start looking for something before that time comes and having those facts will aid in my decision. [ more ]
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J-Pouch ForumsGeneral Discussion
Brand new J-poucher, having a tough time...
S ShelbyC
Stephaniesays91 I'm going through the exact same thing! I'm day 19 post op, so pretty much 3 weeks and I have to say I'm struggling to see the light at the end of the tunnel I feel like I live in the bathroom and I would kill for a decent nights sleep! I just wish I knew how long it would be until things started getting better! Steph xoxo [ more ]
kta Put on your patience hat and let things happen. That was the advice my nurse gave me when I called her about 3 months post takedown. I had just arrived at a family birthday party. Everyone had gone in and I was lurking out by the cars feeling...............socially unacceptable. I knew I'd be in the loo too much and that embarassed me. I still did not feel too hot and had not really been out socially much in quite some time due to 4 surgeries total. I called my nurse in a panic. When she... [ more ]
ShelbyC I actually had an open wound due to infection during my first surgery (the colectomy). It started off as a small hole, but turned into a veritable fissure after a few weeks due to me still tapering off prednisone. It took about 2 months for the gaping wound to heal, but yours sounds much smaller than that, but it will probably be 5-6 weeks, if I had to guess. [ more ]
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J-Pouch ForumsGeneral Discussion
Surgery Options - Need Advice!
P Pkitty
Jan Dollar I think you are misinterpreting what your docs are telling you. They are saying that the rectum tends to improve during diversion (sometimes it does not, actually, and diversion makes it worse, but that is a different issue). They are NOT saying it is appropriate to leave the colon in place, and divert it, in order to heal it. It does not work that way. If it did, then being on TPN and total bowel rest would do the same thing. It doesn't, generally. I could see a colostomy as an emergency... [ more ]
Pkitty Thanks guys - for now, I am not doing the Jpouch. Do you think the surgeons would entertain my request for a diversion from the colon and keep the colon intact? I'd basically have a stoma at the splenic fixture of the colon right before the ascending colon so that the rectum and sigmoid can heal up or as the surgeon says become "queiscent." [ more ]
Jan Dollar From what I've read, those with Crohn's colitis may be good j-pouch candidates, IF there is no small bowel involvement or perianal disease. The big question is whether that bit of small bowel inflammation is considered small bowel Crohn's or just backwash ileitis from pancolitis. Personally, I'd avoid the ileorectal. The main thing is to discuss all your options with your GI and surgeon. You have chosen Cleveland Clinic as your treatment facility, so if it were me, I would try not to second... [ more ]
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J-Pouch ForumsGeneral Discussion
Does it get better?
Akk3769Akk3769
Akk3769 I had my surgery at Cleveland Clinic and am now seeing Dr. Shen who is a pouch genius! Where I live they wouldn't perform the surgery because they don't know what it is. I guess everyone has their down days where they want to be "normal" again. I remember before I ever got sick, I took it for granted, but I guess good things and bad things come with life. Thanks for all of the comments! [ more ]
Pouch4Wf My wife is 6 months out from takedown. She has felt absolutely horrible up until the last few days. Up until now, she felt exactly like you describe. We were told that she could expect to go back to work within 2 weeks from takedown, HAH. What a joke. My wife ended up living with an undiagnosed outlet stricture that probably contributed to 90% of her misery over the past several months. We finally ended up in the hospital and it still took 4 days to diagnose before treatment. After treatment... [ more ]
MarkGregory Your comments about the surgeon reminds me of my surgeon. He was worse than a used cars salesman. Dont be worried about a long flight overseas. Just make sure to get an aisle seat, close to a bathroom if possible. There is a website where you can look at plane seat layouts, so you can get an idea what seats would work best for you. I like an aisle seat in far as back as possible. Works great for all those trips to the toilet. As far how the plumbing ends up working, everyone is different. On... [ more ]
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J-Pouch ForumsOstomy & Skin
Ostomy Supplies need a home
S Selma
Lynne2 Hi Selma, If you don't get any takers on this site, I am sure you can find a good home for your supplies elsewhere. Ostomy support groups often have a share table, and rest homes and county social services for uninsured might be interested. There's a great group called Girls with Guts that would be a very worthwhile place to donate, but I don't know their procedure for accepting supplies. Even if you don't donate supplies to GWG, I encourage you to check them out on FB or online. Thanks for... [ more ]
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J-Pouch ForumsPouchitis
Back in the Hospital
resres
TE Marie clouseau, It sounds like you have had a rough time. I hope you are better. What dose of D do you take daily to maintain your level of 75? Shingles is a horrible thing to get! Both of my parents have had it and my doctor wanted me to get vaccinated. My insurance company wouldn't pay for it until I was 60 so I paid $225 myself. It was worth it for my peace of mind. For those of you that have had chicken pox please consult with your physicians their opinion about you getting the shingles... [ more ]
clouseau Res, I am having a bad case of pouchitis and have crohns. I was off of antibiotics after doing wheatgrass juicing and sprouts and vegie juicing but then got shingles and went to a holistic health facility in FL that put me on raw food for a week, was terrible for me, and I went down to 97lbs and started pouchitis again, still have it and am back on antibiotics. I am going to try to wean myself off them slowly but bhave to get a bit better. Peptobismol also helped which I alternated with... [ more ]
TE Marie OMG, they had me take 100,000 a couple of times and my level was higher than yours. 2000 won't bring it up, unless you are outside in the sun soaking up the vitamin D in the sunshine and if you were you wouldn't be so low. Can you see an nutritionist who specializes in supplements? I'm taking 5000 a day and was taking 10000 until recently. My level is 62 and it was around 42 a year ago and that is around the bottom of normal. The top is 80. Did they tell you to take vitamin C with the iron? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain spasm pressure in j pouch
B Bergie77
grandmaof1 I had that and the doctor put me on Levisin sl. You put it under your tongue. Works great for me. I can take one or two. Depends on how I feel. Just a thought. Maybe you need a prescription to get you by. I am getting away from them. Slowly but I am. I hope this may help you. [ more ]
phonix2g When I have the feeling of bad pressure its usually the result of a lot of gas build up that's how I actually determine whether I'm going to take the chance and try to pass gas before I run to the toilet. I realized I can only pas gas if I'm laying on my right side or laying on my back with my knees up so it might take some experimenting. [ more ]
Lesandiego Do your "waves" feel like your pouch is in an elevator ride and the bottom just dropped out and it is in a "free fall", so you tighten and squeeze your sphincter to keep it all in? That funny sinking feeling is soooo hard to describe, but that is the best that I can do. [ more ]
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J-Pouch ForumsHelp! Need advice now!
So sore down there all day
C CaryO
ljk Cary O You are in my prayers. You must be exhausted. [ more ]
ljk Any way to prevent this from happening? Just wondering! Thank you I will pray that this pain goes away!! [ more ]
NJK 2 Sitz baths a day. the creams really help. valium is good. a heating pad is a must. Also consider you might have diversion pouchitis or cuffitis. I had all 3. [ more ]
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J-Pouch ForumsGeneral Discussion
Back to the bag???
P possie
JillM After 3 1/2 years of chronic pouchitis I had my pouch disconnected and an end ileo created. My ostomy was great but I still had pouchitis. 18 months later had the pouch out and life has been great ever since!! Last surgery was 2003. Have since had two kids. Eat what I want, do what I want and only take immodium if I need to manage output for an event or at night if I know I ate something that makes me speed up. Never a single moment of regret. Don't hesitate to ask questions! [ more ]
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J-Pouch ForumsGeneral Discussion
A few pointers needed post-op
N Nork
nocolon-2000 I've never particularly prescribed to the "hold it and stretch the pouch" plan as it would lead to similar pains and/or butt burn once emptying took place. In the same way, I prefer "looser" output so that straining does become tempting and possibly creating more of the same issues. And I don't count bathroom visits. I go when I go. I don't care how many times I go in a day. As far as helping once the pain is there: - hot water (sitz bath, shower sprayer, bath, etc.) - Calmoseptine (after... [ more ]
UCWarrior2010 I am almost 4 months post-takedown and even I get this razor blade coming out sensation at times. Especially, if I have had spicy and hot food. I just assumed this was butt burn and would eventually subside. But, previously I had been diagnosed with a fissure and I really hope that this is not a result of the fissure. I don't want that darn thing coming back!! I still have those urges to go too every few minutes if I haven't emptied the pouch for a while. And, at times each of those spasms... [ more ]
dgtracy Baths helped me tremendously after takedown. I also used neosporin on the area. [ more ]
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J-Pouch ForumsHelp! Need advice now!
second day after reversal, expelled some gas urinating
I Ikh
Ikh now it's becoming more frequent... This is a nightmare it's a rare condition, the surgeon told me to wait this to settle but i'm so scared [ more ]
Ikh doctor said he will put me on anthibiotics and will send me home, to see if the problem persists. He also let me understand that if it were really a fistula it will be almost untreatable and will probably lead to pouch excision and permanent ileo... Ok, i'm speculating but i'm beginning to feel desperate, now that everything seemed ok, this problem... I read that infection caused pneumaturia is very rare so i don't know what to think... Something is saying to me, there's a small fistula,... [ more ]
Ikh yes Jan I'm trying to beg the fistula idea but you know when you thought everything is ending it's a bit alarming, luckily they still haven't examined the urinary tract, nor gave me antibiotics... So your hypothesis sounds logical. Morning I went too pee and still had a dark urine, but the color appears not alarming, the odor seems just an urine odor, as i expelling liquid stool color and odor poo from the pouch i suppose it should be much more evident if it were a fistula, not only this... [ more ]
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J-Pouch ForumsPouchitis
Intermittent Burning and green stool
K kentuckyboy
kentuckyboy My Doc prescribed something that I haven't seen mentioned on this forum-Alinia, and it has helped so far. It gave me diarrhea at first but I cut the dosage in half and it gave me a livable condition. This Med was developed to treat cryptosporidium but for some reason it helps. Maybe someone can use this bit of info. [ more ]
PDXDavid The green makes me think bile. Have you tried a bile binder? [ more ]
Jan Dollar Yeah, if I were you, i'd accept thatthe pouch is fine a d you have something else going on, like maybe a funky gallbladder, dyspepsia, ar something else that is upper GI related. Regardless, not a surgical problem (yet), and you probably need a work up by your GI. All symptoms are not pouch related. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Aging pouch?
M MarkGregory
MarkGregory No real differences in weight or shape over the last several years. My guess is pouch is getting overly large, and possibly the entrance to it narrowing some. Im trying to wait until next year for scoping as my problems are not serious at this point. I really think pouch removal is on the horizon, but i am just hoping i can put it off for a few more years. [ more ]
rachelraven I had some weird issues earlier this year, where I swear I wasn't getting the same feelings to go, but I ended up with a narrowing, and once that was cared for, things were back to my norm. I would get nauseated when I couldn't pass things normally. Do you think your outlet is narrower now? I need my gas, too, to help expel things. When things are too quiet in there, sometimes it's harder for me. Cipro makes things too slow for me, for example. Occasionally I've needed milk of magnesia to... [ more ]
Rockwall63 I'm a long-termer too, but cannot say that your 'symptoms' sound/feel familiar. I still get very similar lower ab urges usually accompanied by wonderful, head-turning gurgling noises. Can pretty much fully evacuate at all times, except if I'm eating something that inherently slows me down / bulks up the food. The only thought I had is, what kind of physical shape are you in vs where you were, say, 5 years ago? Have you lost core strength? I honestly don't know if that helps maintain your... [ more ]
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J-Pouch ForumsOstomy & Skin
Vitamins, Clothes, Appliances
Lynne2Lynne2
Lynne2 Thank you for the feedback, Selma. I actually just got one of those wraps and am looking forward to wearing it for the first time tonight. I totally agree about the decision to go perm ileo. Looking back, my husband and I both agree that keeping the ileo instead of going for the j-pouch connection would have saved me from 15 years of discomfort, increasingly potent drugs, lifestyle limitations, emotional stress, who knows what pouchitis for 15 years did to the rest of my body, and etc. etc. [ more ]
Selma I wear the Ostomy Secrets wrap. The pocket holds the bag nicely and it smooths the bag out so I feel more confident it isn't bulging as it fills. Watch their site for one of their sales if the price bothers you. I wear a two piece and can wear fairly tight fitting pants with confidence, just empty frequently. With time you will be more confident about the fit, etc. Getting rid of my j-pouch was the best decision I ever made, wish I had it from the very beginning, live and learn. [ more ]
Lynne2 My goodness. . . more very valuable tips. I'm telling you, I don't know what I'd do without this group of experts. As I mentioned to Pluot (Liz) in a pm, it is so funny to me that we are complete strangers and yet we turn to each other with very personal questions about things like undergarments! So, thanks to your advice, I am more on track with how to proceed. I am in the process of getting samples of various bag types. I'm getting the boy shorts tomorrow morning and will be ordering the... [ more ]
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J-Pouch ForumsPouchitis
begining my pouchitis treatment...
J JMarie
clouseau I am on diflucan a lot with pouchitis. For butt burn I take a very hot bath,sitz,often with epsom salts, I used a bidet and use calmoseptine. I have tried everything and feel it works much better than any other cream. Hope you feel better soon! [ more ]
Scott F I credit VSL #3 for keeping me off of antibiotics for a year. At this point I'm chronically on Cipro, but I consider that even more of a reason to stay on VSL... [ more ]
JMarie Thank you everyone for sharing your first hand knowledge. I was treated with the Diflucan, there was a test and it was yeast. It helped with the main issue. I just finished a 3 week course of 500 mg of Cipro twice daily and am feeling pretty good. I'm still using the protective ointment to protect my skin as I have a small patch of skin that seems to get irritated very easily. I like the bidet idea and was just commenting to my husband that we need to move to Europe so I can have convenient... [ more ]
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J-Pouch ForumsGeneral Discussion
Got a script for VSL3 DS...whats with this price!?
dgtracydgtracy
dgtracy Alight so I went to Walmart and gave them my other insurance card, just to see what I could get it at with that one...35.00 for 3-month supply, provided I do one package per day which is what the doc had prescribed. Totally amazed and grateful...I did alot of worrying prior to this... [ more ]
dgtracy i just called my second insurance to see if i could send the unused portion to them, the woman could not answer it, she wanted to transfer me and that had already happened enough so i just asked her what it would cost under their plan, (it was filed under my other one) not only was it 87.50 but she said that was for a 3-month supply...3 packs of 20..i am going to the pharmacy today to run that card with them and see if i get near the same price, if not im calling them back and doing that. [ more ]
dgtracy as of right now im under the assumption that my surgeon wants me to do one packet a day, if that doesnt help then she wants to increase to 2...thats an expensive experiment to want to do. I have two insurance plans and my gf mentioned i may be able to call my second one and get a part D submition form and submit what i paid to them to dual bill because most pharmacies wont dual bill, its up to you to submit that secondary portion. [ more ]
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J-Pouch ForumsGeneral Discussion
Getting ready to start Humira
B BlmBlp
BlmBlp OK. Will try your suggestions with the remaining pens and request the change to syringes for my next refill. Thanks! [ more ]
Jan Dollar You can ask your doctor to change the Rx to the prefilled syringe. I think doctors just assume everyone would prefer the pen, but once you get over having to throw a dart at yourself, it is so much better to be able to control the speed of the injection,or even pause it until the intense stinging stops. The pharmacy will not switch it without an order, since it is specifically ordered that way. Other tips to reduce the stinging (regardless of the type of syringe you use): 1. Let the syringe... [ more ]
BlmBlp Jan You are right. The pens do sting and I am not exactly a wimp with pain. Looking forward to feeling better... [ more ]
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J-Pouch ForumsGeneral Discussion
Hydrocortisone/praxomine in rectum?
DB Dan B
Bergie77 DAN: I have the same chronic pain pressure when stool enters j pouch. Pain pressure discomfort will come and go intermitently until i empty.Is your pain localized? Do you feel the pressure more on the left or right buttock under your tailbone? The only thing that helps me is Cipro. Have you been checked for fistula or sinus tract? [ more ]
Jan Dollar The replacement is DelziCol and contains 800 mg of mesalazine, instead of the 400mg of Asacol. It works the same way. From what I've been reading, the Asacol patent was not set to expire until July 2013. Hopefully some generics pop up. http://www.delzicol.com/index.jsp Jan [ more ]
TE Marie I took a boat load of Asacol between 1997 and 2010 and their patent expired during that time but nobody bothered to make a generic. I figured because the market was so small. Not enough of us sick to make it worth their while to make a generic one. So please don't tell me they changed the formulation completely or I'm going to have a cow! It was so expensive and I took up to 12 pills a day at times. [ more ]
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J-Pouch ForumsHelp! Need advice now!
this itching is driving me crazy!
crick05crick05
Bob Midden I've had lot's of problem with this itching and burning and now believe that it is due to yeast. But it doesn't appear to be Saccharomyces yeast that causes my problem. I've discovered that Torula yeast is used as a food additive. It can be hydrolyzed to release relatively large amounts of glutamine. Glutamine is essentially MSG (monosodium glutamate) and a flavor enhancer. Food manufacturers use hydrolyzed Torula yeast or other forms of Torula yeast as a flavor enhancer in a large variety... [ more ]
Scott F A common brand name for witch hazel wipes is "Tucks." [ more ]
Rebe0505 i had itching from front to back and found something online it said use moisture wipes with with hazel which i got in rite aid..i could not believe after so long it works..look in hemmroid section of store i also got hemmroidal ointment for in and outside incase itch inside..both od these have done the trick rebe [ more ]
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J-Pouch ForumsGeneral Discussion
Expectations the first year
G gottswood
Jan Dollar I agree. Seems like a good way to monitor the intestinal inflammation. On the C. diff testing though, not all methods are reliable. I believe only the PCR is reliable, and other toxin tests can have false negatives. I guess the next thing to worry about is if this is actually Crohn's... Either way, if it can be controlled ith probiotics, all the better! Jan [ more ]
gottswood Thanks for your input. He has been tested several times for C diff on my request. All have been negative. The calprotectin levels have been a good non invasive way for us to monitor his inflammation and response to treatment. Ultimately he may need a new scope to see how things look depending on whether he improves or not. With the VSL enemas the calprotectin came down from 1750 to 450. Unfortunately we didn't get to test him when he was at his best before things got active again. I am sure... [ more ]
gottswood Most of the time 60-90 mins. Wasn't that long in the beginning. He always empties his pouch first too. [ more ]
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J-Pouch ForumsGeneral Discussion
Feeling lost in adaption period
PH playin hooky
Mahshelley I had my surgeries a few years ago and the leaking didn't really subside until about 2 years post op. I'm 6 years out and I sleep through most nights, no leaks. I Just eat a bulking food (I have bananas before bed) and Imodium. Also a probiotic may help. I found that my body just needed to figure out what the heck was going on and it got there. Just took time. (I hated when people said that but time helps) [ more ]
TE Marie I did that too Lesandiego plus I have a better one I took from one of my dad's hospital stays. He didn't want it so I kept it. He prefers the disposable kind but he doesn't have our kind of problem either. Good idea Ceeeeceeee! I saw them the other day at Walgreens as I still use them and wash them when I change my sheets. I don't need them but I bought a new adjustable bed and don't want to take a chance! [ more ]
CeeeeCeeee Regarding hospital quality bed pads.....I wrote down the name of the linen company my hospital used and called them to ask if they would sell me any of those bed pads. They did! I've had them for over ten years. They launder beautifully and I just automatically use them even if I don't need them. I'd rather be safe than sorry. [ more ]
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J-Pouch ForumsGeneral Discussion
Struggle to empty pouch
MR Mike ryan
Jan Dollar It is possible that if biofeedback is successful with the muscular dysfunction, the prolapse might "fix" itself, since it is probably due to straining. It all depends on how serious the prolapse is, I think. Serious ones, like where there is major telescoping of the bowel, they either need to do a resection/redo or possibly tack the pouch in place on the posterior pelvic wall. What I am saying is that if the prolapse is minor, then it could be overcome and worsening of it prevented by... [ more ]
boy's mom My son has same problem and in spite of normal defogram, prolapse was seen in pouchoscopy at Cleveland Clinic. ( 3 other drs had not dagnosed that) Bio feedback with rectal floor reconditioning was prescribed. Here is question -- local GI pediatrician says bio feedback could help sphincter muscles, but would not help prolapse? Also told not a surgical fix for him. So what is done for prolapse if not bio feedback etc? Has there been anyone on this site who has had success with biofeedback for... [ more ]
liz11 yes, sounds like you need a defecogram and a very experienced jpouch doctor scoping you. in the interim.. have you tried "toilet gymnastics" .. basically moving around into different positions while on the toilet. For me.. what worked best - was "airline crash" position.. leaning over at your waist with your head tucked down by your knees. [ more ]
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J-Pouch ForumsGeneral Discussion
Mix of stuff. Not even sure where to post this
vanessavyvanessavy
Spooky I often get the toe cramping. It can be horrendous. I always assumed it was potassium for me, though. [ more ]
vanessavy HA I wish Quinine worked. I tried that about 6 years ago and that never worked. Mine is more neurological it isn't related to hydration and electrolytes or missing potassium, etc. It is a big case they can't figure out. Nothing is related to a drug. Been this way far before the drug was introduced. I am not on Tindamax for 2 weeks out of the month and when I go on it I sometimes have less appetite but this is very different appetite issues, nothing I have had before. I don't have any... [ more ]
CeeeeCeeee This suggestion won't cure anything, but for me it is almost instant relief from severe muscle cramping.....legs, feet, or hands. I even keep some in my car because those spasms sometimes start while I'm driving. I keep a large bottle of diet tonic water with quinine by my bed.....that is where I experience the worst cramping.....smaller bottle in my car. When the spasms start I take a few slugs of the tonic water. Within a few minutes, the cramping totally subsides. It doesn't matter if the... [ more ]
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J-Pouch ForumsGeneral Discussion
new here :) advice on surgery
BR benched runner
vanessavy There is another guy that I hated but he did 1k jpouches at his residency at Cleveland Clinic. He is in Dallas but I hated his bedside manner that I crossed him off the list. If you google robotic jpouch Plano, TX you might find him. If I saw his name i might recognize it. He is in a Texas colorectal group. Lichliter is very good. Huber is also but that is a call you can make. I loved Huber and went back to him for final decision before having the BCIR done and he talked to me as if I was... [ more ]
benched runner Thank you Vanessa! I will definitely look there first. The thing I'm most nervous about is being away from my kids for the first time. They could come to Dallas though [ more ]
vanessavy Phillip Huber and Warren Lichliter in Dallas, TX (Warren is out of Baylor and Huber out of Medical City) are in the top 1% in the nation for colorectal. Huber was voted most compassionate colorectal surgeon by USA Today Health as well. I would have been ok if they even told me I would die in surgery, that is how great they made me feel about surgery in general. I consulted with MDA even and hated the people there. I would meet with both of them. You won't be disappointed. The only reason I... [ more ]
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J-Pouch ForumsGeneral Discussion
Doctor wants me on Nexium to protect GI Mucosa??
dgtracydgtracy
mgmt10 If it were ME, I wouldn't take it. I doesn't sound necessary. I would still like to here his logic on taking it just out of curiosity. [ more ]
dgtracy I dont have any acid reflux, GERD or anything that i believe would warrant the use of nexium..the only thing i can think of is they dont want the stomach acid to be a factor for something in the pouch? i have no idea...i have not taken it since they told me to do it [ more ]
Scott F My experience with Nexium (Prilosec is almost identical chemically) was that it worked fine but was very, very difficult to stop. There is a rebound productions of stomach acid and reflux that is not to be believed. It damaged my teeth and made me miserable. I eventually weaned off of Nexium very, very gradually, after failing once, by increasing them time between doses by an hour per day over several weeks. Having said all this, I'm back on Prilosec, though I'm not happy about it. It has... [ more ]
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J-Pouch ForumsGeneral Discussion
General K-Pouch Questions
F Future_Jpouch_Patient
vanessavy Just to comment. Today was the first time I left my tube at home. I wasn't far, just at work but didn't have time to metro home. So I went about 20 hours and was ok just gurgling in a meeting. [ more ]
skn69 Hi, I am one of the k pouch oldies here and have probably had the most complications and k pouch surgeries of all...not bragging here, just explaining that I do love my k pouch, have fought tooth and nail to keep it and have needed a lot of surgical assistance to do so...that said and this is speaking about an imperfect k pouch... I intubate about 8 xs/day...when I get up/go to bed, before and after every meal and if needed at about 3-4 hr intervals throughout the day...good days I can go... [ more ]
Jan Dollar The 20-30+% failure rate was long ago, when ileoanal anastomosis became more common. Improvements in both procedures, and patient selection, have improved long term success rates for both over time. The more recent data indicates a failure rate more like 10-15%. But, it varies from center to center. Interestingly enough, the overall satisfaction rates are similar between j-pouch, continent ileostomy, and end ileostomy. This tells me that all are satisfactory options, and all have their... [ more ]
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J-Pouch ForumsGeneral Discussion
Hot Weather Tolerance Changing?
NYC GooglerNYC Googler
Jeff P. I had problems staying hydrated after my surgery and a hot day would wipe me out. It's better now, but I need to remember to drink a lot of water. Also, my butt was never sweat before surgery, but is now, especially on hot days. I haven't figured that one out yet. [ more ]
vanessavy The colon is your water supply. I can't personally take any heat, it gets deep in my skin it feels like and can't breathe right, very weird feeling, nothing like before so hard for me to really explain. My A/C is on 60 all day long. I had to move north to get relief. [ more ]
Scott F Jan has nailed it, as usual. The only thing I would add is that I must anticipate and stay ahead of my hydration needs. If I wait until I'm thirsty I've waited much too long. If I'm not peeing like a racehorse I figure I'm probably a bit dry. I may be overdoing it - heck, I probably am. But in eleven very active years I've never had a dehydration issue. [ more ]
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J-Pouch ForumsGeneral Discussion
Humira
B BlmBlp
BlmBlp OK. Thank you. I'll give it two more months and keep my fingers crossed. [ more ]
Jan Dollar It can take up to 3 months to see the full effect, if it is going to be effective. After that, if there is no mprovement, you can assume it is a no go. Myself, I saw results within a month. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Confused? Not sure what to think?
M mom2panda
Jan Dollar Hmmm...that doesn't sound good. Might be time to have your gallbladder checked. Antibiotics could have calmed down a touchy gallbladder. Your symptoms (other than that leaking) sound more upper GI. The leaking is another story. Could be the stricture returning? One thing for sure, this doesn't seem right. Jan [ more ]
mom2panda Thanks, Jan. I should have mentioned that I am also on Lomotil - 2 tabs 4x per day and Metamucil 2x per day. That leaves me with 11-15 BM's a day. The leaking was somewhat sudden as it only started happening in a 3 week period and got progressively worse. I never had had any leaking - especially at night - prior to all of this. I got major constipation from the antibiotics as well as wicked fatigue. In addition to the symptoms returning, I also have stomach cramps after eating now. I am lost. [ more ]
Jan Dollar Could just be some bacterial overgrowth, but could also be pouchitis. Way too soon to be worried this is something chronic. Sometimes it just takes longer for these things to get worked out. It is easy to think that you need the antibiotics, since they seem to solve all your problems. But, it could also just be part of the adaptation that we all have to endure. Antibiotics help because they reduce the amount of stool by wiping out the bacteria. Good in the sense of reducing your output. Not... [ more ]
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J-Pouch ForumsK-Pouch Korner
Valve repair--constant drainage?
D dylanfan
vanessavy I'd leave it in. My friend just had surgery and formed a fistula due to things not healing right. Let those staples and things settle to prevent anything horrible happening. I wore a leg bag for 2 weeks or so to straighten out a kinked valve and it sucked so I feel your pain but when it is done healing you won't have to deal with it anymore. If it gets damaged it might set you back to having more surgery. [ more ]
dylanfan Thanks guys! What you both said makes sense. I guess I'll just have to be patient [ more ]
skn69 Dylan, When your surgeon operates on your valve he needs to tack things down with either sutures or staples which stay in place until the valve heals or they are reabsorbed or fall out depending on his preferences, technique and your body's healing process. When you keep the tube in place for a month it serves to allow your vavle to scar into positon or place and prevent those precious staples or sutures from moving while doing so...if you are pulling out and pushing in your tube regularly... [ more ]
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J-Pouch ForumsGeneral Discussion
how to ease pain in using suppositories?
BM boy's mom
jeffp One thing I didn't think of earlier is a nice, hot bath. That might help soothe the pain. [ more ]
dgtracy I'm saying i wouldnt do it myself, i was prescribed proctofoam which is hydrocortisone, didnt do much for me, easy to retain much easier than canasa, preparation H, and that little Nozzle it had irritated things, never tried their supps [ more ]
boy's mom he is already prescribed a month of annucort - which is hydrocortisone. It seems like a lot of people use that or hyrdrocortisone foam? [ more ]
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J-Pouch ForumsGeneral Discussion
Hydrocortisone Warning
P PDXDavid
dgtracy They gave me that conversation about heparin and how i needed to take it while in the hospital etc...i said "lady...have you seen me walking? i past by you...you said hello good job, keep it up..." i felt like the first time i got that heparin shot she basically attacked me...i was mid conversation with her about being gentle and she essentially stabbed me in the stomach with it...it worked but after that NOPE [ more ]
Spooky I was using cortifoam or entocort on and off pretty much the entire time I had my rectum. I was prescribed it because I needed it. In this case, I think the doctor was probably cautioning against using it when it wasn't absolutely warranted -- but the same would go for any drug. I mean, for a while post-op I was taking heparin. Nasty drug and caused me to bruise like you wouldn't believe, but at the time I was at risk for clots, so I had to deal with it. As usual, always follow your doctor's... [ more ]
rachelraven Agreed. I work in critical care, and I'm used to seeing medicines used in massive doses, even steroids. Must weigh the benefit vs risk in all situations, including with meds. [ more ]
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J-Pouch ForumsGeneral Discussion
FODMAP Diet
S Subzeromambo
Subzeromambo I found it. Thank you! [ more ]
Anushka Just search for "fodmap" in you App Store if you have an iPhone. It should be the first result, the one published by Monash University, blue icon. [ more ]
Subzeromambo Beckysmom: I hope your daughter has a speedy and successful recovery! Anushka: I wish I had known about the diet before I lost my colon. I suspect my quality of life would have been much better. What is the app called? I do feel much better after a week on the diet. I find my fear of food causing pain is slowly disappearing. I am glad it is working for you too. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
PLEASE HELP
kronikDiarrheakronikDiarrhea
MarkGregory Do you feel lots of pressure in the pouch, but cant force anything out? Or does it seem further up? If you are feeling fullness in the pouch, and are unable to force anything out, then you should try using a medina catheter to expel things, and get some relief, at least until you can be checked out by your doctor. This catheter has been a lifesaver for me, as i have had elimination problems practically since day one. They come about 12" long, but cut them to about 6". Makes them easier to... [ more ]
rachelraven That's ridiculous advice. Tell them to seek other care. [ more ]
Anushka Oh dear! One person I know who has a stricture was told by a GI to take Malox. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
3 years later and still feeling great!
L Lyns
NancyJo Lyns, I enjoyed reading your post. Your story gives me some validation for my decisions. It was 41 years ago that I was diagnosed with UC, I could not have gone on that long with out being blessed with long remissions. The last 4 years though was very difficult with flare ups that were grueling and then "teaser" remissions. I decided to go in for surgery in a fairly healthy state, rather than waiting for some kind of emergency to force my hand. I struggled with this decision for a long time... [ more ]
Scott F I haven't seen Dr. Mowschenson's name in years. I had a consultation with him in 2000 or so, but he believed I had Crohn's and wouldn't agree to or recommend a J-pouch for me. I was impressed by his honesty and thoughtful manner. I ended up chasing down a less conservative surgeon on the West Coast, and fortunately haven't been punished for my aggressive approach. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Air travel
U UCWarrior2010
NancyJo Hello everyone, I am new to this forum. I found you all by searching for J-Pouch forums. I am 2 days away from having my take-down surgery and I am anticipating this with trepidation. I travel a lot for business and this business of travel with the j-pouch was a deep concern for me. Your comments have given me a great sense of relief. All my questions and concerns have been addressed. So thank you. I realize it will not be a cake-walk at first, but at least I can look forward to someday... [ more ]
Spike Hi there. I travel extensively by air. Up to 40 flights or even more most years. generally these are only an hour or so but in the last 4 years I have done 4 trips to Europe return from my home in New Zealand. Guess what - no problems at all. I had a J Pouch in 2004 and the first few months maybe even a year were a bit strange. Now it is not an issue. Having said that I don't gorge myself on food anytime but especially flying long haul. I limit myself to one beer because beer in quantity is... [ more ]
AllyKat I try not to eat or eat very little before a flight because my pouch seems to build up with a lot of gas with the change of air pressure. [ more ]
See all 20 replies...
J-Pouch ForumsGeneral Discussion
Cleveland Clinic and bad news - now what?
P Pkitty
Pluot Cleveland Clinic still performs j-pouches on confirmed Crohn's patients depending on other risk factors. You can read more about their "j-pouch risk score" in this paper: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1360119/ My understanding is that one of the main requirements is that the patient have Crohn's colitis without small bowel involvement. I don't know much about microscopic inflammation and whether that would be considered a level of inflammation that would rule out a j-pouch. If... [ more ]
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J-Pouch ForumsGeneral Discussion
9 days post step 1- too nauseous to eat/drink :(
A Anthonyv
Pluot I'll strongly second that. I was switched from opiates to oral Tylenol (paracetamol) four days post op. As long as you can keep it down it should be tolerable. Have they tried any anti nausea meds? [ more ]
Scott F Strong (opiate) pain meds commonly cause nausea. If that's the cause, the best way to get rid of the nausea is to reduce or eliminate the opiates. Perhaps you can try putting up with more discomfort? [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Probiotics
F FrustratedButFighting
Scott F Sharon's suggestion will often work, but if you're stuck on the tarmac in hot weather the baggage compartment can get quite warm. I take the opposite gamble and always carry it on. [ more ]
skn69 Most baggage holds in the plan are not temperature controlled and thus very, very cold ( the contents of your luggage is usually freezing cold if you open it just after you take it off of the belt)...so I put any delicate foodstuff or meds in my suitcase..I used to bring cheese in from France in the good old days when it wasn't ilegal. It arrived nearly frozen...so if you need to, keep it cold, take it strait out of the fridge and put it strait into ziploc and then into a thermal bag (to... [ more ]
Scott F I travel with VSL #3 all the time. It's okay if it comes to room temperature for up to a week, but it's hard to know how carefully it was handled before you ever got it. Depending on the length of a trip (and my level of obsessiveness) I have used all of the following techniques at least once: 1) Carry it in doubled paper bags so it's less likely to warm up in transit. 2) Put it in Ziplock bags and pack those in a big, wide-mouth ice-filled thermos. Sometimes this method leaks, depending on... [ more ]
See all 3 replies...

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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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This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.


Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).

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