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J-Pouch ForumsGeneral Discussion
Question for Jan Dollar
Kline84Kline84
Jan Dollar Frances, Hopefully you are discussing the weight thing in your therapy sessions. Since I know nothing about you personally, I may be all wet in my thinking. But, for me, I needed to be OK with an imperfect outcome (I am not going to be a fashion model or wear a bikini). I do not hang my happiness on my weight, and I know I will always be a little chubby (more to love?). Perhaps if you joined something like Weight Watchers you could get the motivation you need. Once you lose 10 pounds, you'll... [ more ]
Frances I cant thank you enough for just saying you know how difficult this must be. It has been the hardest year of my life. I am not looking for a magic pill just want to be healthy and loose the weight. I am thankful that i have a medicine that keeps everything under 90% under control. I have a wonderful family that has been great. I thank god for them. I just feel like a salmon swimming up stream with every step foward i go two back. I will not give up i cant but i just want my hard work to pay... [ more ]
Jan Dollar Sure, sometimes unintended weight gain is a side effect of some medications, but it is too easy to try to pin it on that. So, I think you are smart to look at others factors. Depression alone can lead to weight gain and there are multiple factors. It leads to emotional eating, which often is empty, snack food calories. Plus, not working drastically reduces your activity levels. And pile onto that, the fact that the stress and anxiety associated with finances, employment, your health, your... [ more ]
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J-Pouch ForumsGeneral Discussion
1 year after surgery
O Onwisconsin
runner4449 Fantastic! I remember you being helpful and supportive when I first found this forum right before my take-down surgery (and I was an anxious mess), so it's great to hear a good update from you. Take care! [ more ]
kta What a wonderful post. Congrats on your one year anniversary and your good health. I think everyone needs to read these types of stories to know just how life changing this surgery can be. I am 9 years out and, except for moments during that challenging first year, have never regretted the surgery. Like you, it gave me my life back. I had gone downhill slowly so did not realize just how much my UC was controlling what I did or just how generally yucky I felt. Toward the end, all hell broke... [ more ]
ljk What a relief to read that this is all worth it.I am waiting for my takedown surgery in about 1 month. I sometimes fear of the unknown so again, I enjoy hearing your story! I pray like you that I do not have any accidents and and dont have to take immodium anymore. [ more ]
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J-Pouch ForumsGeneral Discussion
Prepping for Step 1 of 3
P Pkitty
kta Directly after one of my surgeries, I can't remember if it was the end or the loop, I had not had any output and was getting a bit worried. I woke up in the middle of the night and the bag was so full of gas that I knew if I tried to get up, it would explode. I was scared to move. I rang for the nurse and thankfully she arrived quickly. She carefully emptied it and all was well. The only other time I had an issue was when I got careless about emptying gas. The bag was about 1/3 full, but had... [ more ]
Pluot Hi! First of all, good luck. I am doing three step and I will echo what everyone else has said -- quality of life after step 1 is AWESOME. answers to qs.. (1) Once in the morning, two or three times in the afternoon/evening. If I ate breakfast at home and emptied before leaving for work, I would go through the entire workday, including eating lunch, without emptying. For the first month or so I always woke up in the middle of the night to empty, but by the end (I had it for about four... [ more ]
Uc-Danielle Yes! I recommend it. I'm 24 and I coached softball for my college and it made me less self conscious and I could raise up ans catch high throw without worrying about my bag showing! It cost like 90 something I think [ more ]
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J-Pouch ForumsGeneral Discussion
Do any of you drink Beer?
XenophonXenophon
Former Member ❤️
Cristol Beer was my drink of choice, but it does cause serious butt burn for me. I am not sure if it is gluten (as I find gluten does affect me somewhat). Mixed drinks with little sugar doesn't bother me at all (cranberry (1/2 cal)/vodka)). Wine causes major butt burn for me and if I have a drink with a lot of sugar----then I have severe itching. Hope this helps! I will say that if I do drink a few, I can sleep through the night---I suppose because I am so dehydrated. [ more ]
bratcat I'm not a beer drinker, but I do like my wine or mixed drinks. I find I do get a bit more butt burn the next day. I just kind of deal with it. I usually only have two drinks and it's in moderation (once every other week at most). My tummy does sometimes go out of whack but I can never tell if it is from drinking, what I ate, or the time of the month (I really need to keep a log or something...). [ more ]
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J-Pouch ForumsGeneral Discussion
Chron's of the Pouch
F Future_Jpouch_Patient
n/a Future_Jpouch_Patient: I don't know whether biologics are in my future or not. None of my drs. have ever really encouraged me to get on them, as the cuffitis is now being controlled well enough with the Canasa for the time being. My fistula is probably a result of the constant, severe inflammation in the ATZ/cuff - caused by the disease. The fistula can cause problems if it "backs up" and creates an abscess (super-ouch), or start branching off, creating more fistulas. With a seton, these... [ more ]
boy's mom my son had the take down in April. In July he had a video capsule showing crohns in his small intestine.Last year he had the capsule and the small bowle was completly normal. Since takedown he has had pouchitis, cuffitis and more and more nausea making it hard to eat. He is 6 weeks on TPN thru a PICC line. He will probably start biologics next week. [ more ]
Future_Jpouch_Patient Thanks guys. n/a - if the cuffitis is kept at bay with the suppositories, will you still need biologics? What kind of problems does the fistula cause? [ more ]
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J-Pouch ForumsGeneral Discussion
One thing
P PHedges
Caty This is not the most important thing but I thought I would add it anyway. I panicked the first time it happened to me. If you drink something red in the hospital or at home, you will see red in the bowl. IT'S NOT BLOOD! Caty [ more ]
PHedges Thanks Jan, Scott, Marianne, and Lesandiego for your advice,I thanked the others earlier. yes I have a positive attitude, much faith, a wonderful surgeon, and a very supportive Mom and Sister. I realize there is a "process" associated with the J-Pouch including risk, rewards, set backs, bad days and good ones too. Thanks to all for giving me your advice and support! [ more ]
Lesandiego I too had emergency surgery with multiple complications. The 2nd step (1st of 2 for J-Pouch) when exactly as planned with no complications. Your stoma will be different and a little difficult to maintain. The 3rd step did not go as well and instead of 3 nights in the hospital, I spent 7 nights. I was running a fever and throwing up a lot the first few days. Nobody told me why, but with hindsight, I suspect it could have been pouchitis, due to my eating solids a little too soon. Stick to the... [ more ]
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J-Pouch ForumsGeneral Discussion
Cipro and flagyl help cuffitis??
dgtracydgtracy
dgtracy Thank you, the doc knows i put myself back on it, I will know more of whats going on this coming Thursday, first scope. [ more ]
Pluot Cipro and flagyl were the only drugs that helped my steroid refractory UC so I can see them working for cuffitis too. You need to be taking these meds under the direction and supervision of a doctor, if not identifying a more benign treatment protocol. I ultimately opted for surgery because flagyl was the only thing keeping me out of the hospital but it started to cause optic nerve neuropathy, a complication that can lead to vision loss. Neuropathy in the extremities is also pretty common... [ more ]
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J-Pouch ForumsGeneral Discussion
S, J and W pouches
P Pkitty
Trojan Thanks for your reply Jan. What you say makes a lot of sense to me as the issue came after i had an abscess which significantly constricted my emptying, decreased my frequency and hence stretched my pouch. i can live with it for now, while i lookout for pouch shrinking techniques! [ more ]
Jan Dollar For the life of me, I could not find specific medical literature that pointed to that, but I know I read it somewhere, some time. Anyway, people with j-pouches periodically suffer from mechanical problems due to a too large pouch. Typically, it is related to anal stricture, leading to pouch outlet obstruction. This in turn leads to chronic pouch distension and incomplete emptying issues. So, I guess it would make sense that a pouch that starts out larger might be more likely to develop this... [ more ]
Trojan W-pouches are OK fr the most part, but have an increased risk of an overstetched pouch hat is difficult to empty. Hello Jan, I have an 18 year old W pouch, which, in the last few years, has become difficult to empty. My doctor has limited knowledge/experience of this issue. I would be VERY interested if you could point me towards any further info on this topic. Thanks, John [ more ]
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J-Pouch ForumsGeneral Discussion
Two Years in August, First Post on Forum, What's Working...
James BJames B
Brian E. Hey James, I am a year younger and can somewhat relate to your experience. Quite the ride you've been on brother. All the best to you and just so you know my wife and I enjoyed Portland tremendously while visiting. Take care! Brian [ more ]
James B Ah yes, perfusion. I just looked it up. Nice to have the right words for describing everything. Amazing how much new vocabulary and terminology we end up learning on this journey. Who would have thought that I'd have this wealth of medical experience at 39 years old? =) James [ more ]
Scott F Welcome, James, and congratulations on that miracle foot! I think the phenomenon you're describing is "perfusion." It's a good thing - just healthy blood flow to the body part. The pain was from perfusing a foot that was half dead. I'm very glad you got through it. [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone tried juicing??
M Mason&Mara'smom
Former Member ❤️
Anushka I met with a nutritionist this week who confirmed juicing is a great way for new pouchers like me to get veggies without the fiber. But he wisely advised to only drink very small amounts at a time, like 1-2 oz or whatever yield you get from a typical meal's serving of veggies. For example, if a typical side of carrots with dinner equals 2 whole carrots, the only drink the juice produced from 2 carrots. I have a really excellent Omega Vert masticating juicer. It took me months to get over... [ more ]
NJK Try not to use too many fruits because they are so high in sugar. I juice a few times a week. I stay heavy on the green size. but it does make me more active so I use banana, applesauce and lomotil to slow things down. Stay well hydrated. I find that it cuts the but burn too esp if I stick with greens. [ more ]
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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 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 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 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 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 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 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 ]
See all 6 replies...
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 ]
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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 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 ]
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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...
J-Pouch ForumsGeneral Discussion
Homemade Hummus
D Dog
CTBarrister By the ways, Girard's has now put out a very tasty roasted garlic hummus salad dressing. It is very good. [ more ]
Dog Thanks! I'll give it a try again and see what happens. [ more ]
skn69 Gas and wallpaper paste yes, hard, no...could it be dehydration? If it contained a lot of spices or salt you may need to up your liquid intake when eating it...or it may be the bread that you ate with it??? give it a week and try again... Sharon ps. The more garlic and lemon juice in it the better! [ more ]
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J-Pouch ForumsGeneral Discussion
can't go
magic30magic30
TE Marie I'm curious too Magic. I just read this and wanted to tell you your thyroid is most important to your pouch function. You need to take it the first thing in the morning 45-60 minutes with water before you eat or take any other medications. If you need to set your cellphone alarm, I have to do that when I'm taking antibiotics. On 2 different occasions I've been to the Mayo clinic and my thyroid levels were way off and my GI specialist there explained that alone can affect frequency and... [ more ]
Spooky Hi magic, Did you get up update? How are you feeling? [ more ]
Jan Dollar I agree, particularly if you've been inconsistent with your treatment. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Male Impotence Question
F Future_Jpouch_Patient
CTBarrister It is a statistic based on actual incidences. It is not a probability. It is a statistic. I should add that when I had my surgery with Dr. Gelernt in 1992 he had done more J Pouches than anyone in the USA and very likely the world. It was in the thousands. He knew what the percentages were better than anyone. [ more ]
Future_Jpouch_Patient So - when all these people and surgeons quote these statistics - what do they actually mean? For example, if my surgeon says 2% chance of permanent impotence. Does that mean that he actually has seen 2 people out of every 100 surgeries he has done become permanently impotent? Or is the 2 percent number an assessment of what he thinks the chances are roughly based on the nature of the surgery? [ more ]
CTBarrister There are other risks to the surgery besides impotence. If you are looking for a risk free alternative or guarantees, you are not going to find them. Death was also mentioned to me as a possible complication of surgery, in addition to impotence (death was mentioned first). I don't know what percentage of surgeries result in death, but if it is the same as permanent impotence, which risk concerns you more? Going back to what Jan said, when I had my surgery in 1992, my surgeon at the time told... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Lower back pain - How can I tell what to do?
sfgiantsjosfgiantsjo
Akk3769 I always get lower back pain when I have pouchitis. I thought that it was because of an injury but turned out it was pouchitis. The weird thing is that I really feel it when I sleep on my back. [ more ]
skn69 I second Jan but might add that if it is radiating from your buttocks downward towards your leg or you are also getting knee pain or aches it might be sciatic nerve pain...sometimes you end up with both...I have severe sacroilitis with a hint of sciatica for the fun of it (do not make me bend and lift or I will scream!) and my only relief is mega doses of anti-inflamatories during a flare along with muscle relaxants and a lot of walking...the more I move the better I am...plus regular... [ more ]
Jan Dollar If you rule out pouchitis, with no other pouchitis symptoms, it could be enteropathic arthritis, which is related to ankylosing spondylitis. My initial symptoms (other than the random tendonitis I would have here and there) was upper buttock pain. This pain was not injury related either, and was worse with inactivity (like at night or resting in a chair), and improved with activity, like walking. At first I thought it was just age catching up with me, but when it went on for months and... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Now Adhesion Surgery!
B beckysmom
beckysmom Thanks for the reply and information Jan. Her surgeon didn't use seprafilm in the past because he says that it can interfere with the healing where he did surgery. He will only use it now if it IS adhesions, even though in the past he said she did not have a lot of adhesions....so we are hoping it is just adhesions. Hoping for the best! [ more ]
Jan Dollar Gee, with all her troubles I would have thought they would have used Seprafilm with the last surgery! But, over time, it seems those adhesion barriers are a mixed bag and not as much of a sure thing as they thought they would be. Still, it is worth a shot, I'd say. I see there is a new warning not to wrap it around an intestinal anastomosis, as it can lead to leaks. I suppose it interferes with the normal scarring process that it also can interfere with the healing at the anastomosis. I... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
defogram test vs mri
BM boy's mom
liz11 A defecogram is a completely different test than a pouchogram. I mentioned this to you in another post a few days ago I believe. I believe he needs the defecogram to understand if he has "mechanical" problems emptying whether due to efferent limb, twisted pouch, pouch too big, or other things. In the defecogram, they fill you up with some kind of contrast, I don't remember what or how, probably it was enemead up the backside. Then you sit on a "throne" and try to poop. This is all visualized... [ more ]
Jan Dollar No, it is NOT the same as a pouchogram! The pouchogram is static and only shows a resting, distended pouch. The defogram shows the actual motion of the pouch during defecation. So, it is the ONLY test that would show if there is colapse or other dysfunction that is not visible on scope or pouchogram. http://www.rogerbeyermd.com/se...rocedures/defecogram Jan [ more ]
boy's mom thank you. Our GI just said a pouchogram is the same as a defogram but in a defogram I thought you had to simulate being on a toilet by sitting so would that make a difference? [ more ]
See all 5 replies...

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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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