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J-Pouch ForumsGeneral Discussion
Questions I am confused on.....
dgtracydgtracy
PHedges I don't eat any fiber since it does not do well for me, I stay pretty much with the protein diet and low residue such rice, potatoes, carrots, green beans, bread... Etc. most of the time I have no issues with consistency. My output isn't liquid unless I eat fiber. Again, try different things and keep track of what works, I think we all do a lot of trial and error. [ more ]
mgmt10 I think for like two weeks after take down I lived on toast, scrambled eggs and yogurt. Then after that I just ate whatever I was preparing for my family and it was life as usual. I never stayed away from fiber...I love fruits and veggies too much. Everyone is different but you will never know unless you try. Start out with small amounts and build from there. The only time I took Imodium is when I had my loop ileo. I didn't take it after takedown because I wanted my body to adjust on its... [ more ]
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J-Pouch ForumsGeneral Discussion
Chrons Colitis/ Indeterminite Colitis
F Future_Jpouch_Patient
Future_Jpouch_Patient thanks Scott - good to hear things turned out well for you! [ more ]
Scott F I've had great results in the eleven years since my pouch was constructed. Two surgeons turned me down, convinced that I had Crohn's. The evidence was conflicted, though, and the pathologists couldn't make a definitive diagnosis even when they had the whole colon to look at. I do have antibiotic-dependent pouchitis (not a rare circumstance), but I do great as long as I stay on Cipro. When I made the decision to have the surgery, I new it might not work and it might not last, but I wanted to... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Cleveland Clinic High Risk OB
A andrea951
JillM The waiting is the worst. Try to find some things to do to pass the time. Fingers crossed for some good numbers and then you will have a little time before the next wait - the ultrasound...the whole process is lots of waiting. End result is worth it though! [ more ]
andrea951 Thanks Jill! I can still hardly believe it! I'm a bit concerned today though because I have some brown spotting. I know it can be normal, but it still worries me. Next week's beta can't come soon enough. [ more ]
JillM No dr recommendations, but lots of congrats! You must be so excited! I had two IVF pregnancies and my babies are now 5 and 7 1/2! [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch, pouchitis?
C Chris_JPouch
Scott F The experiences here suggest that your best shot at avoiding antibiotic-dependent pouchitis (or managing it without meds) are aggressive probiotic use (I take 4 VSL #3 DS packets/day), and a very low carb diet. That being said, long-term antibiotic use also seems to work fine for most folks, once they find out which one(s) don't cause any side-effects. [ more ]
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J-Pouch ForumsGeneral Discussion
cuffitis treatments -injections, biolgics, entocort, sodium butyrate enemas
BM boy's mom
TE Marie I've decided not to do biologics. I'm 57 and have other health problems. I elected the surgeries because nothing was working and I refused to go on prednisone again too. I have another test to take a Mayo. I'm on an adjusted treatment plan too so am hoping thing are going to improve [ more ]
boy's mom p.s - my son did not have nausea or problems eating until after his take-down. When he had the illeostomies he was OK with food -- only since the take down did that all change...as if he did not have crohns until the pouch aggravated his system... [ more ]
boy's mom Yes, we just learned from the video capsule report that he now has crohns. He did the video capsule a year ago and had a report of "normal small bowel", so up until now his diagnosis had been ulcerative colitis. His colon was removed in emergency surgery this past October. He had j pouch surgery in January and take down in April. SInce April he has been struggling - first cycling thru antibiotics, too much weight loss and on his 6 week of TPN with PICC line, then increasing nausea/problems... [ more ]
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J-Pouch ForumsGeneral Discussion
Cleveland Clinic
P Pkitty
Peaches My husband just had surgery at CC with Dr. Stocchi July 1st. The rest of his colon was removed (partial colectomy was done locally May 2012) and they did the j-pouch/loop ileostomy. Thankfully it could all be done lapriscopically. They are very accommodating when you come from a distance. For instance, at our consult appt in April they said if we could stay a couple days longer, they'd go ahead and do x-rays, labs, CT & scopes so it'd all be done before surgery. They don't take any other... [ more ]
Uc-Danielle Dr. Remzi did my surgery and it was a 3 step because I needed more time to heal. And it was done laparoscopically. [ more ]
res I'm still having issues with pouchitis/possible crohns. I saw Dr. lashner and Dr. Shen at the clinic three weeks ago as a follow-up from my hospital stay for severe pouchitis, dehydration, and anemia. I had been on prednisone, cipro and flagyl for e month and half leading up to my appointment. So I was mostly healed although there were quite a few ulcerations. So I went another two weeks on cipro and flagyl. I've been off the antibiotics for a little over a week now and my symptoms are back. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blood/lots of pain when going to bathroom
N NMLady
TE Marie My GI referred me to an IBD specialist at Mayo, 4 hours from there, as he nor my surgeon knew what else to do for my cuffitis after it did not go away after months of cuffitis or anucort suppository use. He said that he treats the entire digestive tract and that I needed an IBD specialist. He had no problem doing the pouch scope, taking biopsies and treating me. It was just when it didn't respond to the treatment that he referred me. I've had other pouchers warn of ER rooms as all doctors... [ more ]
Lesandiego My GI did not state "Why" and I did not ask. About 2-months after my TD, I kind of felt like my surgeon left me hanging since he did not request me to make a follow-up appointment. I was having some problems with frequency of stools and pain with gas. It would be more convenient for me to see my GI logistically, so I figured since I graduated through the HMO referral sequence to my Surgeon, It would make sense that I would downgrade through the same sequence after my TD. When I tried to get... [ more ]
Scott F If it helps, any (general) GI so content with professional mediocrity that they exclude J-pouchers is one you're better off without, IMO. [ more ]
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J-Pouch ForumsOstomy & Skin
VSL
Lynne2Lynne2
jeane Just from my personal experience, my dad has had an ileostomy for 25 years and has never used probiotics. Although his surgery was performed many years ago, he has never used probiotics nor was he ever recommended to. He has had a perfect functioning ileostomy with complete renewed health snd zero GI issues since be removed his diseased colon without ever using probiotics. [ more ]
Jan Dollar Without a reservoir, I don't see where it would colonize. Jan [ more ]
Caty Lynne, I don't see any reason to use VSL or any other probiotic. I've had my permanent ileostomy since 2007. I enjoy yogurt once in awhile, but I don't need it. I suffered from pouchitis and fistulas from 1992 to 2007. All that craziness stopped after I got my ileostomy. I just became a healthy person again. You might want to wean yourself off the VSL, but that's the only thing I might do if I had been taken VSL as you have. Caty [ more ]
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J-Pouch ForumsGeneral Discussion
B-Sure Pads
P PolypsAplenty
ljk By the way you are so luck to be living in Hawaii!! [ more ]
ljk Thanks so much for responding! I am still having discomfort and the surgery was 6/17 I have tried to just not focus and move around, but it wont go away. Its kinda like dull cramps and pressure. I also have a little pressure in my butt. I am tired of feeling like this everyday its something new. I see my surgeon again on 8/08 so I am looking foward to what is said. I am also struggeling with my output, its still watery after taking immodium 6 tabs a day. what the heck, I am concerned when I... [ more ]
PolypsAplenty I had continence problems during the first five weeks after my takedown (I had a two step surgery.) I never had to deal with it before because I don't have UC. Basically, I would have great urgency just to go a little bit, and I'd have two to three accidents a day during that time (mostly in bed at night - but the two "best" ones were in the airport and in my car driving -- Some of the looks I got were priceless.) With the B-Sure pads, Depends, and those bed pads, I was able to control the... [ more ]
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J-Pouch ForumsGeneral Discussion
Wow, the good times just keep rolling
SpookySpooky
Spooky In in the process of trying to work something out with my office, so that I can come back immediately after my scope and then hopefully get a ride to the meeting with someone. [ more ]
Jan Dollar You should be able to make that dinner, paticularly if you forego the sedation. It sounds like you are gurgly/gassy anyway, so maybe it won't matter much. Can you have a co-worker let the other diners know you may be a little late because of a medical appointment that could not be rescheduled? Most people understand those things. Makes you human. Good luck! Jan [ more ]
Spooky Actually, I can do the scope just fine without meds. I've had 3 where I wasn't sedated. It's just I'm always really gassy/uncomfortable afterwards, and it will be cutting it close getting to where I need to be. Not to mention, I'm single and my family is overseas until the 30th (well my sister is here but she's 7 months pregnant and lives an hour away) - I'm pretty much all on my own for getting anywhere. I'll try to get a ride to the meeting with a coworker, if possible. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
rectal, sacrum, and left side vaginal pain - severe!
lovedby2lovedby2
NJK I had rectal and vaginal pain. I had nerve damage that caused the vaginal pain and getting the inflammation under control and getting my fistula healed up helped. I have been going to a physical therapist for the pelvic pain and between humira and the PT it is a lot better. But first you have to figure out the cause. [ more ]
lovedby2 Thank you. I'm going to check on that! [ more ]
phoenix08 Hi! Are there any free health clinics in your area of the country? Maybe google and see if there are any. Wish you the best. [ more ]
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J-Pouch ForumsGeneral Discussion
Long plane flight
T tiki
flyer I have a four year old j pouch and work as a Flight Attendant. There are some days that I do not have to use the lavatory. Other days I may need to use it 3 or 4 tims [ more ]
tiki I thought maybe buying something like depends for the journey would give me some piece of mind. [ more ]
CeeeeCeeee Since having a J-pouch I've only been on two long flights. One from California to/from Vietnam and one from California to/from China. For years I knew this was coming and so I squirreled away money and flew business class with lay-flat seats for sleeping. For me, those seats were worth every penny. [ more ]
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J-Pouch ForumsGeneral Discussion
first pouchoscopy
dgtracydgtracy
dgtracy I believe I am being told to do the fleet enema too..she said something about one anyway. I'm also really nervous because the last time they messed with my rectal area that's when my problems started..its like they made something mad! [ more ]
mgmt10 Honestly, it's not a big deal. I had one last July. It didn't hurt...just a bit uncomfortable. And since you are being sedated you won't really know anything. I have another coming up in August and this time they told me to do a fleet enema a few hours before the appt. No sedeation. After all the years of being sick and in pain with UC, I am so desensitized to all this stuff that nothing really fazes me anymore so maybe that's why I find it no big deal. Try not to worry about it. Oh and it... [ more ]
cassiecass I am doing my second scoping in 2 weeks.I was nervous last year for my first scoping from formation of my pouch.I hope and prayer it goes as well as last year.I walked out fine. Cassiecass Good luck to you both [ more ]
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J-Pouch ForumsGeneral Discussion
Hangovers for J-Pouchers
MJ Manuel J.
mgmt10 I am not a bigger drinker but I do enjoy some wine with friends from time to time. I ALWAYS wake up now with a throbbing headache from it. Never used to happen before. But it just seems to be with wine so it is probably the sulfates in it that I am now sensitive too. I haven't noticed anything different with mixed drinks. [ more ]
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J-Pouch ForumsGeneral Discussion
irritating when I sit
MH Mike H
PDXDavid 3rd step was October 2009. After my last ER visit and subsequent surgery and hospitalization in March of this year (new fistulas with 2 new setons added), my surgeon vaguely said "we should figure our what is going on....." Ummmm.... yeah. Great plan. Right up there with D-Day and the Apollo program. [ more ]
Mike H PDX when was your 3 step complete? What do your surgeons think the cause is? Mike [ more ]
PDXDavid I cannot sit upright for any length of time. I spend my days reclined or lying down. Inflatable donuts actually make it worse. [ more ]
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J-Pouch ForumsK-Pouch Korner
Any k or J pouchers in Austrailia need surgery?
skn69skn69
skn69 That is so dangerous Ad, You need to be able to move forward with your life no matter what happens, no matter what medical solution you get..as long as you are no longer in pain, suffering or incontinent...life is way too short to waste on the stuff that we cannot have, you need to grab what you can get (which would not prevent you from getting a k pouch further down the line if and when possible) and heal, live and enjoy a bit of life...then worry about other stuff...for now this... [ more ]
Adroen Thanks for the offer Sharon. I feel like that will just backfire on me and give the guy who's caused all this more ammunition. Even though our hearts would be in the right place, I think it would be seen as undermining my surgeon. I can't get out of my head how close I was to a better life(maybe of course). Just keeps running through my head. Ad [ more ]
skn69 Ad, If you can get hold of your medical file, please send me a copy and I will forward it off to my k pouch surgeon for a consult...then if need be and if he agrees, he can send back an opinion on your K pouch worthiness and maybe change your surgeon's mind... Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Expectations for three step
P Pkitty
ljk I just had step 2 done about 4 weeks ago. I do have to say that this is HARD! For me anyway I think for me the big problem is that I was not fully informed of what happens. Although I sat with the Dr. at length asking question on 2 seperate visits and still the things that I am going through was not explained. I know CRAZY right. My expectations for step 3 is kinda scary just because did they negect to share anything with me involving this step, I hope not! And I pray every night that things... [ more ]
Pluot I had severe proctitis in my rectum after step 1, but it was not particularly debilitating. I still returned to work after six weeks, flew to a beach vacation after seven weeks, went to restaurants, on dates (and sleepovers!), to the gym, etc. At the height of the proctitis I needed to pass blood and mucus out of my rectum three or four times a day, usually in the morning and then after meals. Sometimes it was urgent but I only had "an accident" once, and it was small and at home (keep in... [ more ]
Mike H Pkitty you will probably not have any issues with the rectum after step 1. I felt so normal after the first surgery it was amazing. after about 6 weeks you wont even realize you are wearing a "bag". After the surgery ask your surgeon what the little piece of rectum looks like that is left. He can tell you if it looks good or bad and what you can expect. The few people I know that had rectal inflamation after the first surgery just had a feeling of having to go to the bathroom fom time to... [ more ]
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J-Pouch ForumsGeneral Discussion
Cuffitis or pouchitis or just need dilating??
dgtracydgtracy
jeane So sorry for imposing on the thread dgtracey. I have had such an emotional few days and I thank everyone on this post who has given wonderful advice. Liz I will check my pm. Thank you all again. I am so not accustomed to this feeling of helplessness and I totally empathize with others on this post as to the trials they are currently experiencing or have experuenced. I wish I could bring some great advice to others who are struggling and hope to one day be able to. [ more ]
liz11 jeane I pm'ed you yesterday. very glad to hear you are going to see a counselor. I think it may help you in getting over this roadblock you are at and making some decisions to get your life back where you want it to be. best wishes. [ more ]
Jan Dollar If you look at the percentages quoted in the article, only a small percentage were associated with the various intraoperative and post operative complications (all together they don't add up to half), so do not assume you have any of them, just because you have this problematic stricture. All your exams and imaging should have shown these problems. And yes, your docs should be able to tell if this was fibrotic in nature during the dilations under anesthesia. It takes a lot more force to... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Bleeding and my period
SpookySpooky
Jan Dollar "Get a sex change?" Really!?! Glad you have a new GI, since that is a particularly unhelpful response. Hopefully, he was kidding, but geeze, I don't mind a little office humor, but unless it was offered with some useful advice... Hope the Pill works. I found it useful when I had my colon, but had flares during pregnancy. They were mild flares though. Maybe the patch would be OK for those who can't go back on the Pill. Jan [ more ]
Donnana11 I have the same thing and have more recently noticed this trend sometime over the last few years. I also get extremely sharp pains and palpable balls (of gas?). I had asked my GI about it and he said "get a sex change". I have a new GI now and he consulted with my GP who now has me on the pill just 3 days ago. I hope to have good news in a month. What did your doctor say at your appointment on the 25th? [ more ]
kblgal For whatever it's worth (possibly not much since I'm only 4.5 weeks after takedown), my stools have randomly been bloody during my period too! I have been worried about the blood but after reading what you guys posted, I'm thinking it's just the period thing and realized the blood correlated with the start of my period. My pouch is "angry" too so many it's just common like all the other symptoms. Thanks for sharing! Though I'll know to get it checked out if it sticks around after my period... [ more ]
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J-Pouch ForumsGeneral Discussion
What to take to make stools more firm?
A Andreita
PolypsAplenty 1 Tbsp of sugar free metamucil (sugar will make you more liquid) in 4oz. water after your first and last meal of the day works for me. Don't drink water for an hour after the metamucil. Also helpful for me are bananas and goldfish crackers. Hope that helps! [ more ]
PDXDavid I take Colestopol. It's a colesterol drug normally. It binds bile and thickens the stool some - double acting. [ more ]
Anushka I seem to be having good results with Pepto Bismol pills, and it seems to be quelling my afternoon spells of feeling miserably ill with G.I. upset. I take 2 pills 3x/day with a meal. [ more ]
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J-Pouch ForumsGeneral Discussion
Pain after BM
T Traveller
dgtracy back in my UC days i used Neosporin, still do for butt burn days and its better than anything else i have used. [ more ]
PDXDavid Have you tried Calmoseptine? It works for me for light soreness near the rectum associated with a BM. Unfortunately for me, only opiate pain killers or overdoses of Tramadol work when the pain ramps up past the mild stage. One of the things that the large intestine does is to recycle acids, so your stool is more acidic now as it exits. Not to mention that with many people with a pouch, the BM exits under more pressure than normal, creating a friction "burn." There is also the possibility of... [ more ]
dgtracy Jeanette, having chronic cuffitis what did they put you on to try and control it? [ more ]
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J-Pouch ForumsGeneral Discussion
Less toxic Toilet cleaning maintenance
L Leeloo
wooly-bobs Does or did anyone find that our BM would stain a toilet seat if left there for a length of time? Before you all wonder if I don't clean up, I mean after a night time call in the dark its difficult to see if you have splash back on the under side of the seat. The toilet seat after a while seems to have stains on that will just not come off, its as if the surface had been eaten away by acid requiring a seat replacement. I know stoma output is very acidic but I still have my colon, for a few... [ more ]
Goodspeede Baking soda and vinegar are really useful, clean, and inexpensive. The containers they come in usually have "recipes" for cleaning materials. Here is another tip, not necessary toilet related, but I make my own laundry detergent using washing soda (like baking soda, made by arm & hammer), fells-naptha laundry soap, and borax.All can be found in the laundry detergent isle at your grocery store (I get them at walmart). So easy and a great $ saver! I can vouch for its stain removal power... [ more ]
Leeloo Baking soda! Great suggestion! Thanks! I'll try it! [ more ]
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J-Pouch ForumsGeneral Discussion
Can we discuss heat intolerance?
K Kia
NYC Googler I hadn't seen this thread earlier so I posted a question about this exact subject. I'm 70 and I really have a difficult time when the temperature reaches above 80. I stay well hydrated but it doesn't seem to matter. Ugh! [ more ]
Kia Ugh, Sharon. I soooo feel for you. lol about tight clothing and spaces. I am the same away. If I can feel someone's body heat radiating, they are too close! [ more ]
vanessavy One reason I left Texas. I can handle humid heat way easier than dry heat. Spring In NOVA still is a PIA. The colon is your water source so with that gone I am a panting idiot. [ more ]
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J-Pouch ForumsGeneral Discussion
Draining pouch prior to takedown
J JsWife
Mike H I had the same problem an my takedown is in September. Dr told me to use hot sitz baths or sit in a hot tub. The heat gets things moving around down there and shortly after I passed alot of mucous which cleaned it all out and I have only been going once per day. Mike [ more ]
squid381 He will go through times of adjustment. Use metmcil to fill pouche. This will stretch put capacity . I do kegels to strengthen rectum. I got plenty of cramping as my pouche was stretching / taking shape. For the butt burn I used neosporone cream. [ more ]
jeane Very normal. There is still mucous formation in the intestine even though it is diverted. [ more ]
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J-Pouch ForumsGeneral Discussion
Ideas on what this could be? Partial blockage?
SpookySpooky
Spooky Lord knows I could use a vacation. Road trip to California it is. [ more ]
kathy smith You can both come to my GI. She's a goddess and brilliantly brilliant. It's not too far to travel, right? kathy [ more ]
suebear I'm with you Spooky; the one time I took Cipro it made me feel crappy, never again. I tolerate Flagyl much better. We're partners in crime; I'm having to meet a new surgeon next week; mine is retiring. I'm having a difficult time with accepting the transition. I hope you get your problem solved. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Abdominal/Core Stregthening
J Jpouch8888
liz11 planks and planks with one leg up in the air and side planks, and side planks with one leg up in the air. holding each as long as you can. breathing through it all. [ more ]
skn69 I have found that the swiss ball ( the huge pilates ball) is a godsend for my tortured abs. I had 5 or 6 hernias (lost count) over 5yrs and gave up on my abs til I got one and used it nightly...no effort, just hanging over it backwards and rolling side to side, back and forth etc, pushing up agaist a sofa or wall and sitting on it...in 2 months I got abs of steel without hurting my abdoment or hernia sites...thrilled! Sharon [ more ]
vanessavy I do full situps, started doing them 6 months post op. Crunches have bothered me ever since I had a Tummy tuck a few years ago. Walking can build your core. Just always make sure it is engaged with everything you do. Medicine ball is also good to use. #1 core builder are planks. Do them in sets of three for as long as you can hold every time. [ more ]
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J-Pouch ForumsGeneral Discussion
Cravings?
M mads101
skn69 I go from salt to sugar to dairy and back..I have always followed my cravings ( not always a good thing for my weight) but storngly believe that they indicate true dietary needs and it has proved me right (artichokes and lemon for galbladder problems...)If it does not interfere with either weight, digestion or lifestyle then go for it but check with your doctor if it is causing you problems. Sharon [ more ]
Laurie49 Jan -- I didn't know that about ice. My body doesn't produce enough ferritin to store iron properly -- so I need frequent infusions and am almost always anemic. I am an iceaholic -- and had no idea that was a sign of my condition (and we know that is really odd as I know everything! ). [ more ]
rachelraven My daughter will eat salt like crazy when she actually is dehydrated and really needs to increase her fluid intake. She's gotten constipated not reading her thirst cues correctly. Craving salt is a strong indication of dehydration. It's your wonky way of trying to retain what water you do have. Increase your fluids, GOOD fluids, and see if that helps. It's likely the issue. [ more ]
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J-Pouch ForumsPouchitis
How I got off antibiotics
C clouseau
vanessavy Just buy the grass and use some small amount of water and blend it then strain and use. I make mine in my vitamix all the time that way. I have been chugging wheat grass before it became "cool." [ more ]
clouseau Sorry it took me so long to get back I have been out of town. I was buying my wheatgrass juice at Whole Foods but now bought a slow mastricating juicer that handles wheatgrass. I do 2oz drink in AM and at 6PM no later as it can keep you awake. I do a rectal enema with 3 oz where I hold it in, it isn't easy, for as long as I can 5-20 minutes. Now the bad news, I am very embarrassed to say I am back on antibiotics, I think because the medical retreat I went to in FL had us all eating only raw... [ more ]
Jan Dollar They sell it at Jamba Juice, if you wanted to try it. Otherwise, just Google it, and you'll find lots of places to buy it. It is a nutrition thing. http://en.wikipedia.org/wiki/Wheatgrass Jan [ more ]
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J-Pouch ForumsPouchitis
question about surgeons at cleveland clinic
BM boy's mom
vanessavy Dr Remzi is a long wait, I believe 4-6 months. When I booked to see him it was a 5 month wait. Shen could possibly get you in since he did that with me but I was turned down and sent to Dietz since Remzi no longer deals with continent ileos. Dietz & Ashburn, who I love, are who most are going to lately depending on the issue. If it is something more advanced then Remzi would take the case. His assistant determines that. [ more ]
jeane Dr Shen and dr remzi ( surgeon) often work in tandem. If you are lucky enough to have a Gi who knows them, he can talk to them to get your son in possibly sooner than without their connection. Dr Remzi really is the go to surgeon for pouch advancement surgery, however he is very booked and there are probably equally qualified surgeons there also to help your son. Dr. Shen is the only GI I would see there as I have seen both of these guys for my chronic issues and Dr.Shen specializes in... [ more ]
liz11 dr.shen will refer you to a surgeon if he deems one is required. I would trust whomever he referred you to. Dr. Remzi, head of colrectal there, does many pouch redos, pouch fixes, and pouch excisions. He is usually booked very far out, but somehow squeezes in certain cases sooner. If you are going to travel to CC, you need to schedule a few days so shen can get all the tests in that he may find your little boy requires and that if a surgical consult is required, there will be time to fit... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anyone know of major air-am-trak to Cleveland Clinic?
D Dot2
vanessavy I go every 2 months if she wants to book an appointment when I go. I can take her if she wants to cover 50 bucks in gas. PM me if interested. I am not going until end of August though most likely. [ more ]
Mike H Yes, there is an amtrak station about 25 minutes from the cleveland clinic. You can get there from baltimore (penn station) to washington then to cleveland. I do no think amtrak goes directly from baltimore to cleveland. [ more ]
twinkie There are direct flights from BWI TO CLEVELAND at reasonable rates. Also there is the Angel Flights, ppl who volunteer to fly medically compromised patients across the country that need specialized care but can't afford the travel. hope this helps. [ more ]
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J-Pouch ForumsHelp! Need advice now!
video capsule with pouch safe?
BM boy's mom
vanessavy I get them with a BCIR [ more ]
speech path I'm to have one soon, too. I'm nervous because I have narrowings and things get stuck often. I had an MRE and it showed narrowings. The doctor offered a great solution for my case- it's a patency capsule. Basically same size as the regular one, but has no camera. What's special is it will dissolve if it's stuck. So I feel it's worth the risk. After swallowing it, I have to have an X-ray three hours later to see where it is. If I do ok then I'll move forward with the video capsule. See if... [ more ]
Jan Dollar Yes, if Crohn's was not suspected, it could assumed there is a better chance of pouch salvage surgery being successful. If Crohn's was suspected, then pouch salvage would be less likely to be successful, and he would not be a candidate for a continent ileostomy(Kock pouch or BCIR). Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Bladder dysfunction as a result of surgery
XenophonXenophon
vanessavy I have Interstitial Cystitis a very common bladder condition. I have it due to nerve damage from abdominal surgery I had back in 2004. Some people get IC if they have other auto-immune disorders. Something you might want to explore. For years doctors said I had UTIs but turned out I had IC the whole time. See a Urologist or Urogynecologist (if female). Pelvic Floor Disorder goes hand in hand with it so if it is PFD that can be addressed. [ more ]
Akk3769 My mom's friend was experiencing bladder problems after she had a hysterectomy. Although she had different problems in which she would have to wear diapers because she had accidents. We sent her to the Cleveland Clinic because we love it there and they found that when she had her hysterectomy they actually punctured her bladder.Maybe they should open you up again just to make sure they didn't do anything [ more ]
CeeeeCeeee BTW.....my urologist said it is not necessary to empty the bladder 100% when urinating. Can't remember how much residual urine is okay to have in the bladder after peeing. Maybe Jan knows. I've trained myself to empty my J-pouch every time I use the toilet to urinate. Problem is, when asked to give a urine specimen, I cannot give a clean catch! So, I really am glad I know how to self catheterize. It is far more reliable (clean) a sample I submit to the lab than one I'd secure by unassisted ... [ more ]
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J-Pouch ForumsGeneral Discussion
End ileo and nutrient observation
F Future_Jpouch_Patient
Jan Dollar Too funny! Jan [ more ]
Dog Jan, I have to share this from a biology class in high school. "Mucus, full of protein. You can swallow it or spit it on your friends." - HS Teacher Gross, but you know what, I REMEMBERED that mucus is basically protein. [ more ]
Jan Dollar The inflamed mucosa is like a giant burn wound, oozing and weeping. The body tries to manufacture more and more mucus to protect the lining of the colon, and this is shed like rain off a duck. Unfortunately, it contains massive amounts of protein. Jan [ more ]
See all 8 replies...
J-Pouch ForumsK-Pouch Korner
Need advice on ileostomy decision
vanessavyvanessavy
vanessavy There is nothing to fix in my BCIR (I don't have a Kpouch). I have nothing wrong basically so there is nothing to do to it. If I wanted am ileostomy then that is the only option to go to. I came to the conclusion I had this surgery because I can't live with a bag so I will make it work. For now it is what it is. Had some more nerve blocks done at CC and helped a lot with some pain so keeping at this and trucking along. Go for runs now and stuff so life is 'ok'. Also I wouldn't go anywhere... [ more ]
vanessavy Decided to ride this sucker out. I know I can't live with a bag. Reason I got this surgery in the 1st place. I have to think maybe a few years down the road this might do a 180. More I read ostomy boards and Fb threads the more their issues sound all like mine, just external and slightly different. Foul smell from smelly mucus on my stoma = smelly bags, nervous pooping when the stench is bad in my gut = people get embarrassed emptying bags at work due to smell, loud noises from stoma = loud... [ more ]
skn69 Lard? Could you maybe use duck fat instead? Much healthier and no colestorol! Sharon [ more ]
See all 27 replies...
J-Pouch ForumsGeneral Discussion
Passing gas on the toilet
L Limbo
Dog Gas pains 4 weeks out can be bad, but it gets better as your pouch expands. I think after the 6 month mark, I was happily farting again without pre-fart bloating pain. Sometimes rocking on the toilet helps pass gas. . .other times I'd get on my knees, face on the ground, and. . .wait. [ more ]
rachelraven I never had issues passing gas (except in a standing position, haven't done that since 1990!). I can do it on the toilet, sitting, or lying down without issue. When I did have issues, my pouch outlet had narrowed, and I had to go for dilations. I also had to strain to pass stool at that time, too. Surgeons can tell with a digital exam if that's an issue for you. Some folks just have weird angled pouches, though, and are forced to do aerobics, if you will, to get the gas out. [ more ]
dgtracy i have that problem now,sort of..there are times when i can let gas out on the throne, and others where its just not there...what i do (and i know this still is not feasable while at school or work) if i have alot of gas or know that the gas is whats keeping me going to the bathroom alot, i will lay down on my side or something in the bathroom and when i feel that urge about to hit..jump up like a monkey and im able to get most of it out. havent had to do this in a little while, I'm 2 months... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
work and bad days?
L LoveLife
Dog You might try some marshmallows if the crackers are getting you down. Hang in there! [ more ]
dgtracy I had to find this thread so I could comment on it. I'm at work today...particularly a rough day.. I keep having to go to the bathroom whenever I get up from my desk. I realized the only way to get through my day is to deal with it..other than eating peanut butter and crackers to slow my gut down that's honestly it. I don't even want to eat the crackers because I don't want to feel anymore constipated then I already feel...double edge sword thing going on. Just bidding my time to where I can... [ more ]
Scott F If you're having problems periodically, then it's no different from any chronic illness. It depends completely on how disabled you are, and how frequently. You may need some sick time periodically, but just about everyone does. Most decent employers understand that people sometimes get sick, even contractors. I've been very lucky, and I don't think I've take a single pouch-related sick day in the eleven years since my surgery, except for a few hours off for two pouchoscopies. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Going on 5 days..tight anal muscles and sore lower abdomen
J jdgrimm
kathy smith The things that come to mind are pouchitis or a partial blockage. For a pouchitis diagnosis give your doctor a call and run your symptoms by her/him. For a partial blockage, try sticking with warm liquids for a bit to see if the symptoms lessen. Are you taking bowel slowers? If so, and if this is a partial blockage, you should stop taking them. Are you taking any other medication? I hope you get answers quickly. kathy [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Three fistulas! Have questions.
K Kelsie
Kelsie We probably will. [ more ]
rachelraven Can you get a second opinion? [ more ]
Kelsie She had an MRI and that is what the radiologist report said, three fistulas. One horseshoe one that likely communicates with a smaller one and then a third tiny one. The surgeon couldn't find them on exam. I guess Im just nervous there is something there that isn't visible to the surgeon. It would certainly explain the pain and feeling so awful. So we just wait and worry?? I dont like the idea of waiting until they are really bad to know if they exist. [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Morning BMs are...Foamy...and question about Preparation H
dgtracydgtracy
rachelraven I can't tolerate psyllium, either. Never could... Tried in the beginning, 'cause they tell you you'll need it after takedown, but it backfired with me, and I quit that right quick. I never needed Immodium or Lomotil, either. [ more ]
Scott F My wife and I call Metamucil wafers "nasty biscuits." They're okay, but not the best cookie on the store shelf. I used them for a few years but switched to the powder because I wanted fewer calories, won't eat artificial sweeteners, and had poor results with the capsules. [ more ]
Jan Dollar I am one who cannot tolerate psyllium products. Gives me gas and cramps. I was taking it for weeks post op before I made the connection. I guess I am a slow learner. My surgeon just said, "take this stuff 4 times a day," and I obeyed. I think I am in the minority though. Jan [ more ]
See all 20 replies...
J-Pouch ForumsGeneral Discussion
Can't stop the leaking
XenophonXenophon
Xenophon My wife said "How about an Elvis Sandwich?" I said what? She said you know Toasted Peanut Butter and Banana Sandwich! I remember Elvis being partial to them, at least that is what I read. The Sandwich is really good. So there you go. [ more ]
Dog White rice and saltines are very bland and give you a good base to start from. Then you can add in more foods. I think my next step was watermelon and cantalope. I was craving those(they didn't bulk up my stool, just sharing). Peanut butter + banana usually slowed me up. So did marshmallow. Baked potatoes were iffy. Especially if I ate the skin. My meals in the beginning after take down were small portions and several meals a day, but that was more out of an over abundance of caution. The... [ more ]
Xenophon So white rice, saltines, peanut butter, marshmallows, and baked potatoes? Still small portions and several meals? How do you tell if it is food or pouchitis Did you go through a period like this? Thanks [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
HELP
L ljk
ljk Hi Rachel, By the way, I have an older sister named Rachael! My stoma is located on the lower R side on my tummy located about 2 inches below my belly button. The reason I explained it that way previously is because when I called my Dr., whoever answered was not getting what I was trying to tell her, until I used the word vagina!! Everyday is a learning curve with this but I can say I have done OK. Things just might be a little better if I was properly explained the surgery. I saw her 2... [ more ]
rachelraven A loop ileostomy is like a not quite cut in half intestine. Think of a garden hose. If you cut almost through it, and bent it back, so the two holes are side by side, and the rest of the hose is behind them. That's a really basic picture of a loop ileostomy. Where is your ostomy? I'm confused, you said "Well as I was trying to put in on I noticed drainage just like the same out of my butt it was coming out where the stool comes out it was coming out at the bottom of my stoma towards my... [ more ]
ljk Well today was a very bad day for me. It started off good but it just fell apart. It was time to do my ostomy change, no big deal right! Well as I was trying to put in on I noticed drainage just like the same out of my butt it was coming out where the stool comes out it was coming out at the bottom of my stoma towards my vagina. My thought was SOMETHING is WRONG!! I went ahead and put my pouch on but I called the Cleveland Clinic right away. Of course they had to take a message and was told... [ more ]
See all 17 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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