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J-Pouch ForumsGeneral Discussion
blood tests
Paul HPaul H
Paul H They do all that as standard just wondered if there's anything else, my veins are v poor & the artery is the only way to extract so I want to make sure its only done once a year. [ more ]
Jeffsmom I'd go for the whole panel, sugar, CBC, liver function, thyroid, white blood cells. And that's about all I can think of. [ more ]
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J-Pouch ForumsGeneral Discussion
How long after surgery do check ups beome maintenance as opposed to recovery?
S Shainy
Jeffsmom Scott, don't wait too long! I almost died, from other than this stuff, twice! I learned in my case, when you can't breath, co to the doctor. dianne [ more ]
Jeffsmom Lab lover, I'm a lab lover too! They are truly the best! Do you show yours, or better yet, are they family? We showed ours for a number of years. Hard work. But first and foremost they were family! Miss them so much. if you show them, where are you from? dianne [ more ]
lablover My husband now sees a gastro doctor now for checkups. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Obesity and Jpouch surgery
M M&MRN
mh3609 I guess it all depends on how risk averse you are that determines your viewpoint on the issue. All these factors do increase the risks of the surgeries. So it is personal preference on if you prefer a more conservative approach or those that are more aggressive in their assessment. Based on personal experience I was extremely risk averse because of my mother passing away 2 days after a surgery where the surgeon was really aggressive in his treatment. So I probably would have done anything my... [ more ]
katenet Jan I totally agree with you. [ more ]
M&MRN I have had a fecal transplant. It didnt work or was ineffective due to the damage and inflammation of my colon. My GI even placed some in my small intestine for good measure and he said it all "followed him right back out". He also said my colon was so inflammed that it had shortened. I was thinking...if I have to face something so difficult I wasn't a surgeon with a "can do" attitude. It is hard enough to deal with UC and C. Diff without extra negativity. This is my 4th time with C. Diff in... [ more ]
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J-Pouch ForumsGeneral Discussion
General inquiry
P_O'GormanP_O'Gorman
P_O'Gorman Thanks Richard. It's a bit disappointing when I have my bad days, but I try always to remember how much improved I am from the days of ulcerative colitis, steroids and other powerful drugs! [ more ]
Mysticobra I know exactly what you mean. I work on a freight dock and the effort when you have diarrhea just wears you out fast. I am having a couple days like that now. Then all of a sudden I will have two... Three days where I am just fine and then back to diarrhea. Not my diet. I have tried everything. Even eating almost the same thing all week. No difference what I eat. It goes back and forth. I have gotten better over time and hope as more time goes by it will get even better. Think the worst and... [ more ]
P_O'Gorman Mysticobra, it's good that you don't miss work. I don't usually have any problems with emptying. I seem to be an all or nothing type of case. Either very well, or crampy, loose and not very well. The nature of my job doesn't help, pushing, pulling, lifting etc all day long. I think a kind of tiredness just sets in, when diarrhoea and cramps start and my body says No. [ more ]
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J-Pouch ForumsPouchitis
Anorectal Manography
K katenet
TE Marie I think I had the same test. It was an easy test for me but now I see what they can tell from it - other than testing the spinchter muscles control capabilities. I hope the nitroglycerin helps. I'm assuming you use it topically but do you insert it?. How do you use it? I've heard of some people that have had botox injections and wonder if the treatments are similar. Good Luck I hope it works! [ more ]
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J-Pouch ForumsGeneral Discussion
FMT treatment for SIBO
kiwiPouchnUSAkiwiPouchnUSA
Ljz Thanks TE Marie! Maybe tomorrow I will try getting 'extra' Canasa doses in between my Cortifoam doses. My doctor is hesitant on that cause he feels inserting anything can cause damage, and that since I've been on prednisone my tissue/skin has thinned. But, last few days I've skipped most doses of both since I'm suffering from multiple hemmeroids, and without those meds I'm doing worse than usual. So, tomorrow, I'll try different plan. Thanks! Laurie [ more ]
TE Marie FYI - Cipro was the antibiotic that "caused" my first bout with c.diff when I still had my colon. I've had a nasty time with c.diff in my j-pouch too. It took multiple rounds of flagyl to get rid of it. If it ever comes back they will have to give me something else as flagyl makes my neuropathy worse. Liz you might want to try using your foam and canasa. When I'm having some of my worst days I use it and anucort - at different times of the day. Now I just throw everything at it to get my... [ more ]
Scott F The antibiotics used to treat SIBO are typically different than those for pouchitis. I used doxycycline for a couple of months, and that did the trick in my case. If you do end up looking at surgery for cuffitis that just won't quit, pouch advancement with mucosectomy usually works well if performed by a very skilled and experienced surgeon. The hand-sewn anastamosis is a very delicate technique. This would be most likely to succeed if cuffitis is the *only* problem. [ more ]
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J-Pouch ForumsGeneral Discussion
Low Grade Frontal Lobe Headaches?
ATXGuyATXGuy
Jeffsmom I think you are describing allergies and sinus stuff. I have extremely bad allergies and even worse sinus disease. A frontal lobe headache is classic sinus disease. Top teeth may hurt. Or could be TMJ. That also causes headaches and jaw pain. Check your eyes. I bet you have dark circles in the corners or even red lines on your lower lids. Go see an ENT. Forget the primary! Dianne [ more ]
ATXGuy No ED drugs. Allergies are a possibility, but I've been lucky this year generally. [ more ]
mgmt10 I don't know where you live but could it be seasonal allergies? Every Spring I deal with headaches and it's usually from my sinuses. Also, I get dull headaches too when my iron is low. [ more ]
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J-Pouch ForumsHelp! Need advice now!
blockage?
U UjohnjC
UjohnjC Stoped taking all lomitol Imodium still no bm how long can blockage last? See dr tomorrow afternoon drinking lots of water and tea and white grape juice [ more ]
dtmack Possibly yes. With a blockage, the pain comes in waves and tends to get worse. Very little will come out until it passes. Recommend warm drinks like coffee or tea, soup, or white grape juice. Walk as much as possible, If it gets real bad or you start to vomit, head to the ER. Good luck [ more ]
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J-Pouch ForumsGeneral Discussion
Bile Salts Diarrhea
Kathy AKathy A
Kathy A Thank you for your reply and welcome to the site. The people here have been very helpful and supportive. I don't know for sure that Bile Salts Diarrhea is what my problem is but the symptoms fit (and make sense) and I can say for sure that the problem is not specifically related to what I ate. I have been taking Olestyr (same thing as Questran) since I already had some that had been previously prescribed before my takedown. I am very glad to hear that it [hopefully] is a temporary and... [ more ]
P_O'Gorman I do, about three times a year I will have spells that are quite bad, in terms of the burning discomfort. I find the bile acid sequestrants (Questran Lite) to be very good. Basically you take a sachet in a glass of water before eating. Generally works well for me in a few days. [ more ]
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J-Pouch ForumsGeneral Discussion
help with severe rectal pain
FL Fight like a girl
Fight like a girl Hello Jeane...yes thank you for the input. I do use the calmospetine too and was just off of 90 days cipro. It just seems I can't get it to heal. I just know that it really puts a stop to daily activity because of the level of pain. Strange thing is I've never experienced this until 6 years ago when I had my 1st bout with pouchitis. I was blessed with a great j pouch for almost 20 years then kaboom! One thing after another. Hope you can find relief too. Thank you again. Patti [ more ]
jeane So sorry about this. I struggle with exact same issues. Sitz baths do help and calmoseptine. As much as I hate cipro. I tend to reach for it when the rectal/ anal pain gets severe. Lidocaine helps too. I know how consuming the pain is. It never subsides esp when the fissure is active and bleeding. I hope this helps. I have also resorted to a heating pad that I actually place over my clothes on the back end when pain is unbearable. [ more ]
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J-Pouch ForumsGeneral Discussion
Do you have diarrhea all the time?
BarbieGBarbieG
ytcrockpot Hi BarbieG, I totally agree with everything you say. I always have diarrhea, worse in the last 2 years. Nothing works good, OTC barley works, narcotics work best but cant function. I had to stop working because of it. I found following a gluten free diet works best for me. I have always told my doctor and nutritionist, I feel much better when I dont eat. 34years and counting with this disease, I've had it the majority of my life. My diagnosis and J-pouch was all done in the same week when I... [ more ]
chal I mostly have loose stools, but it's kinda by choice. If I use Imodium or other things like that, it makes me feel like I'm constipated, even though I'm not. My trips to the bathroom per day are pretty much normal. I don't let it worry me as long as I feel good. [ more ]
Spencer Ah, sorry, medical marijuana. [ more ]
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J-Pouch ForumsGeneral Discussion
Can you tolerate red meat?
lholdemlholdem
chal I can eat it, but I do pay a price for. It's not too bad so I eat it about once a week. Not my favorite anyway. [ more ]
Former Member I pretty much quit eating red meat, all I remember is the more I eat, the more trouble I can expect with my pouch. But compared to foods such as your harder fruit and veggies it was tolerable. [ more ]
rachelraven Spencer, I avoid bananas, too. They make things too thick... They also give me raging heartburn. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I'm done!!!
U UCBloke
Jeffsmom He does have his stoma back. In that respect he is feeling better but unfortunately he is addicted on the pain medications and trying to get off them. What a difficult process that is! I wish I could get him out of bed, the doctor said that would help, for him to stop laying around and not getting out. But he feels so crumby from all the meds. Hopefully he will be off of them in about two weeks time. I'm getting my break! I'm leaving for Florida tomorrow for a few weeks. Then I'm meeting the... [ more ]
UCBloke Sounds like the poor fella needs a break from it all.. Rough road!! Surely can only get better I have no doubt things will improve when he gets back to a stoma.. I have 18months of zero issues, and maybe he can retry the pouch in the future Again, wishing him a recovery of whatever route he ends up with.. Although you need to stay strong you need a break from it all too!! (Easier said than done I know) [ more ]
Jeffsmom He had his entire large intestine removed June 2014, then he had his takedown in September 2014. We had a few serious complications that took a while to figure out, but in March of this year the decision was made to take him off the j-pouch and give him back his ostomy. The complications he has are rare and difficult so our surgeon is sending us to The Cleveland Clinic. We may be going out in June. Not sure yet, the surgeons need to talk. It's been a really long haul. [ more ]
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J-Pouch ForumsGeneral Discussion
sweets/deserts?
U UjohnjC
chal Sweets increase my output. Chocolate more so than other things. I had a lot of trouble with pouchitis for several years after my surgery. When my surgeon found out I was eating a lot of sweets (my husband ratted me out) , he looked straight at me and said "stop it, right now". I stopped, it did slow my output, but it still took a while to find a good med for my pouchitis. If you have pouchitis, it doesn't help if you are having an excessive amount of BMs. [ more ]
Megan My go to dessert is tiramisu! Sugar usually only increases my output if I eat an abundance of it, which is easy for me to do be I lloovvee dessert. I think I started off with chocolate pudding when I was post op, though. [ more ]
GraceB Thanks for the recipe Sharon I love trying every ones recipes Grace [ more ]
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J-Pouch ForumsHelp! Need advice now!
help for me
S shriramyadav
shriramyadav Pls .if you have any idea for working visa for me pls help.i am so help less. [ more ]
Jan Dollar Ah, I see. You want to relocate and are hoping to find a job lead here. I don't have a clue on how to help you there, but maybe someone will have some search ideas for you. Good luck! Jan [ more ]
shriramyadav thanks for reply me .After having j-pouch i can not do physicaly hard work.in my country currency weak from other country currency.here i am not earning well which my familly life good.so i want to go another country doing for job.my income condition is very poor now.some property has sold in my surrgery.no body help me here.so i decide to search any one who can help me like a freind or brother in whole world.dear brother i want only with you i know every thing in videography... [ more ]
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J-Pouch ForumsGeneral Discussion
Best Smoothie Recipe for This J Poucher
melissa111melissa111
ytcrockpot ❤️
skn69 Hi Grace, There are a number of 'flower waters' that they use over here, Geranium, orange blossom and a few others that I can't remember at the moment. They are extracts kind of like essential oils... You can sometimes get them in specialty stores. It is sometimes call 'Mazar' and a few drops go a long way...they put a few drops in fruit salads, in hot water or tea or on a damp cloth that you can then put on your forehead when you have a headache. They also drip a few drops onto a sugar cube... [ more ]
GraceB HI Sharon What is orange blossom water? Is it oranges soaked in water because it sounds like a good remedy for stomach aches. Thanks for the tips on good smoothies and cure alls. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abdo pain....cause?
V van
Sln I take amitryptiline every night to help with chronic pain. It also helps me sleep better and reduces the number of times I have to use the bathroom at night. [ more ]
Gentle Now I'm wondering the same thing. Around my old stoma site, it is very tender. It hurts whenever I tighten my muscles and also if I push on it. I suspected a hernia, but doc didn't feel anything, and it's not quite so specific to one point; more general in that area. I did an all-night search on adhesions on this forum, and suppose that could be it. Could it also be something simple like a strained muscle or healing pain (I'm 3 months out)? im not sure how to take care. Should i wear a hernia... [ more ]
Scott F Adhesions typically can't be reliably diagnosed without looking at them directly (surgically). When the symptoms act like adhesions, and no other explanation can be found, adhesions are suspected or presumed. That's the state of the art, unfortunately. Most people who've had abdominal surgery have adhesions. Only a fraction of them cause significant trouble, when they happen to be located in unfortunate spots. [ more ]
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J-Pouch ForumsGeneral Discussion
Scope
tftf
jeane This may improve with time. I always have some inflammation in distal pouch w your symptoms Antibiotics do help. I suffered a lot my first three years, but I am in fourth year now and things ebb and flow. I will also probably always have some level of inflammation and the burning does stink but calmoseptine cream does help. Good luck. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Enemas
BA Bill A
Jan Dollar The only VSL#3 that may be covered is the DS (double strength) which is by prescription only. But even then, it may not be covered, as it is classified as a medical food. If you go to the Pouchitis forum, there is a featured thread regarding a comprehensive article about pouchitis treatment. There is a link to the article there. the post is here https://www.j-pouch.org/topic/n...icle-about-pouchitis It probably would not hurt to try mesalamine enemas. They just are not considered... [ more ]
Bill A Could not find post of measallamine. 1 year post 3rd stage and with themorphine sulphate have a life Nothing else worked. They checked for poucities and cufitis I am told at my age I will proably be on it for life. Intestines already addicted. Sine I have a large supply of enemas would it have any advantage in preventing pouchitis. Also I was advised that vsl-3 was best probiotic. It is expensive and not covered by insurance as a vitamin Does anyone have advise please [ more ]
desisn00ps I used Budesonide and Butyrate enemas successfully for 2+ years to keep pouchitis at bay. Mesalamine enemas (Rowasa) didn't help me at all. Feel free to PM me if you have additional questions. [ more ]
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J-Pouch ForumsGeneral Discussion
having a 'moment'
thumprharethumprhare
Megan Your body has been through so much! I had a lot of control issues before takedown as well, I remember vividly leaving a trail from my bed through the room, into the laundry area and to the bathroom.... It was as if my butt thought I might not remember how to get back to my bed. Kegel exercises helped me a lot, I've only had a hand full of accidents since takedown (almost 13 years ago). If you still feel like you're having a lot of problems after your takedown then I would head back to your... [ more ]
skn69 Take a deep breath... Yes, you are stressed, yes you are nervous and yes there will be moments when things do not go right but for the most part and the great majority of us have happy, healthy and cooperative pouches. You may need to do exercises, deep breathing, yoga and other exercises until you get full control back but unless you have a real sphincter problem or other similar longterm problem you should be ok. Just understand that befores & afters are not the same. One bridge at a... [ more ]
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J-Pouch ForumsPouchitis
31 years and counting
P pioneer
Claudia S I don't know if this will help you or not, but I've always had a sensitivity to medications which added to complications of needing the surgery years ago. I couldn't handle the medications prescribed,or the effects due to them, I was that 1% those small warning letters on packages talk about. But for the past 20 years I have had success (knock on wood) with these over the counter replacements, an thus far and have suffered no side effects. Loperamide Hydrochloride 2mg .(Costco best price)... [ more ]
ytcrockpot I too have no regrets, I had my diagnosis and surgery at the same time 34yrs ago when I was 18. Surgery at downstate hospital NYC. Revision 1986-mayo clinic. I am 52 now and remember the doctors telling me as I got older it would be harder. I didn't realize how much harder, until I had to stop working a year ago because no meds work any longer. I've tried everything and the only thing that I can get to slow me down somewhat are narcotics, Vicodin, donnatal which I can't function on. I think... [ more ]
pioneer Haven't been on in a while. Thanks for all the replies. I now have insurance but it doesn't cover the Lahey Clinic where I've had my doctors for the last umpteen years. Right now things are calm though Thank God. All will work out I'm sure. [ more ]
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J-Pouch ForumsGeneral Discussion
Chronic pouchitis? Always in pain,what to do?
CM Cheryl Minn
Cheryl Minn I have also had 5 surgeries over the past 11 years bc of UC, it's been very tough. I am happy to hear about the treatment of others. [ more ]
TE Marie Yes I have chronic pouchitis now. I'm in daily abdominal pain that doctors have concluded is caused by 5 open surgeries and the scarring and adhesion aftermath. There are no physical blockages or obstructions so they won't operate because of them. I do get pouch pain too. I've gone from intermittent pouchitis to chronic. During a pouchoscope they did a balloon dilation in my pouch, just above the cuff on one side, in February. My entire pouch was inflamed and more red than usual. It looked a... [ more ]
Scott F I have chronic pouchitis, but I'm lucky enough that it stays under control as long as I'm on antibiotics (at this point it requires Cipro and Flagyl together to be effective). Are you *certain* that your pain is from pouchitis? I also take a maximum dose of VSL #3 DS, which also seems to help. By combining all three I stay well. There are other antibiotics that sometimes work well for pouchitis: Xifaxan (expensive!), Tindamax, and Augmentin come to mind. Good luck! [ more ]
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J-Pouch ForumsK-Pouch Korner
reddish stool.
W WillLive4ever
WillLive4ever Dear Sharon, No, not granulated. as for my surgery I am very confident in the outcome. I am going to LA and seeing a very good Doctor/ Surgeon. I actually did have a contrast done and I can not say if the people up here that saw it knew what to look for or if when having it I was positioned in the way I would need to be to see certain angles. I do know the history (obviously) and have given Dr. Schiller a lot of what I had and when I see him I think all will be good. I will try that test as... [ more ]
skn69 WillLive, Do you have any granulation on the outside or just inside of your stoma? It kind of looks like tiny white bumps or little stoma-coloured grains of sand or rice. They can bleed an awful lot...and the blood is fresh so very red. Could your tube be slicing into or ripping your valve further down? Hooking on some part of it? All of that could cause micro tears in the valve or inside the pouch that could also start bleeding. The tissue that our pouches are made of is very fragile and... [ more ]
WillLive4ever Originally Posted by skn69: WillLive, Hi, you do well not painicking...it is pointless with our pouches because 99% of all ERs do not know what to do with us and will only make us regret going. Chocolate can contain red dies (they use it to make the chocolate look darker and tastier) and that can die your stool. Also beet (or veggie chips), twizzlers, gummies, wine gums, red jello etc...any red or reddish candies, ice creams, fruit yoghurts, berries etc. Some meats can too (like sausages) so... [ more ]
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J-Pouch ForumsGeneral Discussion
Night time leakage
M Mark01
Mark01 Thanks for the reply again but how would the ilex paste stop leaking? Is it not just to prevent irritation from leaking? [ more ]
Former Member Although I no longer experience night time leakage, for a good couple of weeks after takedown I did and a side effect of applying ilex Paste; it also prevented leakage. Not only do I apply it around the anus but also slightly inside. To prevent stickiness and the need to apply Vaseline over the ilex, I found that only a very small amount of ilex paste is required. In the UK ilex will provide free sample sachet, it's also available on NHS prescription now. ... [ more ]
Mark01 Thanks for the reply. And no I haven't but I'll give it a try [ more ]
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J-Pouch ForumsGeneral Discussion
What to expect after first surgery?
L lovetolive430
CTBarrister I had my ileus and NG tube experience after step 1. I certainly didn't feel that way at the time but I am glad I had the experience, because I learned some things from it about my body, and about our biology generally. Despite the enlightenment I gleaned from it, it was a truly horrific experience. [ more ]
Lisa1972 Good luck with it all. I was so worried about the first step being so difficult as it was 6 hours and a lot being done, having said that .. I found it ok and never had any issues pain or otherwise and was home on day 7 and our bedrooms and bathrooms are upstairs and it wasn't a problem. I was a bit tender but didn't take any pain meds. Step 2 for me was not pleasant as I developed ileus and ended up with a NG tube which was only in for an hour as it coiled and I was still vomiting. After 3... [ more ]
SwollenColon I'm 1 month out from the 1st step, and I've been doing pretty much whatever I want to for the last 2 weeks. My surgery was done with a surgical robot, so I only had 6 small (less than 1") incisions, which I'm sure contributed to my somewhat quick recovery. The worst part is this stoma and bag. I just can't get it to work right because of the location and orientation of the stoma. Takedown is in 2 weeks though, so it'll all be over soon. Good luck with your surgery. Make sure you eat and walk... [ more ]
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J-Pouch ForumsGeneral Discussion
Takedown being reversed ;(
JeffsmomJeffsmom
mary beth I wouldn't have taken her to Mexico but we booked it way before we knew she would need the colectomy. She would never have forgiven me if I canceled. I'm sure the water and food didn't help! Have a great time in Florida, a much needed break for you I'm sure! And good luck in Cleveland, keep me posted. I hope Jeff continues to get better as well [ more ]
Jeffsmom Hi MaryBeth! Glad Lilly is doing well! She sounds like a spunky young lady. Good for her. Funny that you guys went to Mexico. When Jeffrey was first diagnosed, the doctor told us two places to never go, Mexico and China! Some of the issues she was having we probably from the trip. The resorts are fairly save as far as the food goes. Maybe having a few drinks, stirred things up. Jeffrey has a little bit of wine, he and my husband are big on the Reds so they are always trying new stuff,... [ more ]
mary beth Hi Dianne, Glad to hear Jeff is doing well and you're going to Disney! A well deserved vacation for sure! We just got back from Cancun, Lily's senior spring break. Several of her friends/families went. We had a PRETTY good time but Lily was frustrated because she really couldn't keep up with her friends, staying out late at the resort clubs. She did very well the first four days as far as BM frequency but then it started up and by the last night she had several accidents. I was so ready to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain & Urges
C Country
Fixmeup HOpe your surgery goes well. What do you mean when you say you will need to be dilated? [ more ]
Country Just as a follow up. I will have surgery next Thursday (4/16) for scar tissue inside where I was connected inside the rectum that has me about closed up. He said he would have to scrape as he couldn't do the finger exam. I'm looking forward to the surgery in hopes it allows me to get a bit of a life back and eat more than mashed potatoes :-) [ more ]
Country Thank you SilMarillion, I do use Calmoseptine regularly and love it. When times are real bad I add a layer of Dibucaine Ointment 1% under it to give a numbing effect. I'm going to be checked next week to see if I need dilated. I kind of hope that's it as it's a quicker fix in the hospital. Summer's coming and I want to be able to walk around move without the intense urges, pain and occasional accident to cause irritation!! [ more ]
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J-Pouch ForumsGeneral Discussion
Weight Gain
G GraceB
GraceB gaining weight, that is a change from finding it hard to gain weight. I am sure there are plenty of J--pouchers that have this problem. I am sure you will get answers. Eating raw fruit was also a problem for me in the beginning. I can eat pears, apples, grapes in moderation and having to chew very well, but in the beginning I couldn't eat any of that. Good Luck I am sure you will get some feed back [ more ]
Gr8Mamacita K Delhi: Yes, I have been gaining weight too, and they say my thyroid is "fine"/within "normal" range by my taking synthroid,. I write down what I eat every day, and calculate calories, and am eating around 1000 - 1200 calories a day (I'm 5'2") I too, can't eat raw fruits and vegetables. I poop about 10 or more times a day. How can a person gain weight, barely eating, when everything I eat comes right out of me? I eat healthy, and do moderate exercise at the gym when my butt isn't burning or... [ more ]
GraceB Thanks for all info. You are all therapy for me. I value every ones opinion. I know that what works for one doesn't necessarily work for another but the advice is coming from us j-pouchers that know that when we are having a problem we understand the problem. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Excruciating anal burning
G Gr8Mamacita
Jan Dollar Sounds to me like you have a fissure, if water or Vaseline burns. Slow the output however you can. Take frequent sitz baths. Dilitazem cream (prescription only) can help heal. Last resort is Botox injections. Jan [ more ]
rachelraven My favorite back in the day was A&D, but since Vaseline burns you, it might too. How about Bag Balm? I havent had irritation issues in years and years, but with my more recent issue with a fistula, Sitz baths are soothing to me If necessary. Haven't needed them in awhile, but I'd fill it with the hottest water I could stand and just soak my butt, then apply a cream if necessary. I tend to like petroleum based creams best. [ more ]
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J-Pouch ForumsGeneral Discussion
Nutritionist in SWFL dealing w J-pouch diet?
G Gr8Mamacita
Virdent I agree in that everyone is so different it seems one food really can affect one person negatively and be perfectly fine for another. If there's one thing I'd recommend is try a more paleo approach or atleast gluten free. Asia seems to suffer a lot less GI related diseases than the west and they eat a rice heavy diet so I've incorporated that into my diet regularly and my pouch enjoys it. example: Morning: A bannana+probiotic+vitamin d( I like to not eat too much before work instead I have a... [ more ]
suebear I don't think that jpouch nutritionist is needed or would even be practical. Even though we all had the same surgery, we aren't equal when it comes to how our body's are digesting foods. All of this is trial and error and you will need to experiment to find out what works for you. Many people have success with oatmeal; oatmeal does not work for me; it gives me stratospheric frequency. I eat tons of fresh fruits and vegetables but many jpouchers cannot handle much fiber. As for acid there are... [ more ]
ytcrockpot I wish you well finding someone, it took me 30yrs to figure out what Foods I should be eating with a j-pouch and still to this day with a nutritionist it is a work in progress trying to figure it out. You should though try a gluten free diet, since gluten affects the small intestines [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blockage???
J JessGoguen
Jan Dollar Yes, you can get polyps in your pouch. With FAP you need regular follow up to check for this. Any of us can be prone to partial or full obstructions. Whether you need to be seen largely depends on the severity of your symptoms. But, if you think you have an obstruction, you need to stop solid foods, stop all bowel slowers, and increase fluids. It can take a few days to resolve. But, if the pain becomes severe or you cannot keep fluids down, you just have to go to the ER or urgent care. Jan [ more ]
Rittenhousecm I am also having pain in my right side. I am having bowel movements but not as often and have not had to take any lomotil for 2 days. Could I have some kind of blockage or beginning to get one. My surgeon is 5 hours away. Do you think if I called my family physician he could help. Should I start there and let him tell me to call my surgeon. I also have autoimmune diseases (lupus, plus others, neuropathy, and in October had a mass of fibromas removed from my brain.) Having to make the 5 hour... [ more ]
Spooky JessGogue, It's been a couple of days. How are you feeling? Did the blockage pass? I can totally relate to your feelings about the ER. I also loathe it because they don't know what to do with me. The last time I was there for a blockage, which was in September of last year (on a Sunday, of course), the ER physician had absolutely no clue what a j-pouch was, despite my attempts to explain it to him. I actually don't think he was really listening. He twice asked me to show him my ostomy bag... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
body acid produced?
U UjohnjC
Jan Dollar You can take antacids or acid blockers. Many are available over the counter. You can also take a bile binder, like Questran or Cholestid. It binds with the bile acids, reducing the burn and also has a constipating effect. These are prescription only. Jan [ more ]
See 1 reply...
J-Pouch ForumsFAP Forum
Polyps in J-Pouch / GI Doc recommends removal of Pouch...
S SarahKate319
Rittenhousecm Good Evening, I am new to this forum and so glad that I have found it.I am 64. Walt, I am from Alabama also and have FAP. They found hundreds of polyps in my colon after only five years of being completely clean. They removed my colon and rectum. I now have a J-Pouch for almost 2 years.I also have Autoimmune disease (lupus plus others, neuropathy and had a mass of fibromas removed from my brain) I have had no major problems with my pouch but the last 2 days I have had stomach pains and pain... [ more ]
ksr I too have FAP and got my j-pouch in 5/2002. Before my j-pouch surgery, I only grew the bad polyps in my large intestine. Since I got the j-pouch, I started growing the polyps in my stomach, duodenum and rectal stump. My colorectal surgeon advised me when I got my j-pouch never to go over a year without having the EGD and pouch scope. The one time I went a 1 1/2 years for the EGD and pouch scope, the polyps that had grown already had cell changes to them. You are your own advocate. I would... [ more ]
Chuckus Hey Walt, I'd HIGHLY recommend your seeing Dr. Douglas Riegert-Johnson @ Mayo Clinic in Jacksonville. He is an FAP Guru and knows all the ins and outs of FAP. If I can help further, don't hesitate to contact me at anytime. Charlie [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
multi vitamins/minerals
Paul HPaul H
CTBarrister I like the toilet bowl test. If you have crapped out the pill whole or only partially dissolved its time to go to chewable or liquid vitamins. A bit more empirical in my book. [ more ]
GraceB Yes. Your advice makes more sense using vinegar Before my surgery a nutritionist in the hospital told me about the water method with pills. [ more ]
Jan Dollar If you are going to do the "vitamins in a glass" test you should not use water, but warm vinegar. This is to more closely approximate the stomach acid (which is way more acidic than vinegar). Plus, give it more like 30 minutes, stirring every few minutes, instead of 10-15. It does not need to completely dissolve in that time either. Jan [ more ]
See all 14 replies...
J-Pouch ForumsHelp! Need advice now!
Sacroiliac PAIN
DonaDona
Megan Dona, I feel like I have a lot of sugar swings too, maybe I should bring it up next time. Good luck with the diet, hopefully that and hydration will make you feel better. Sharon, You got a lot of news today!!! Sounds like a very aggressive regiment! I hope what you're able to do give you relief! [ more ]
skn69 Thanks Megan, Saw the Rhumy tonight, He took x-rays and confirmed the massive degeneration of discs in the lower lombard region, twisting of the sacroiliac and a tilted, rotated pelvis (not surprised, I have rather severe scoliosis)... For now he is fighting it with 1000mg naproxin s 2xs/day (horse dose), tramadol for the pain, ice, PT and he has suggested that I do a 'thermal treatment'...3 weeks in a sort of thallaso therapy center where they treat me with hot see water and massage. Not... [ more ]
Jan Dollar High blood sugar should not make you lightheaded. It is low blood sugar that can make you lightheaded and shakey. Both my husband and I ha e type 2diabetes. More likely dehydration. I have been able to keep my blood sugars and HbA1c within normal range with just diet control. My husband has not been so lucky. A big reduction in your carb intake should make a big difference. Good luck! Jan [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
Outraged with CDC ad campaigns
S SM
CTBarrister I agree Jan. I have seen those tracheotomy anti-smoking commercials on TV for a long time and I never once thought of them as offensive to persons with tracheotomies. There is no functional difference between the tracheotomy ads and the ostomy ads. You can find offense in anything I suppose. I think it's all a matter of perception. There is nothing objectively offensive about any of these ads. This is not like the debate over the offensiveness of the Charlie Hebdo cartoons which got their... [ more ]
Jan Dollar I did watch the videos at the CDC website. I have not seen them broadcast on TV. I see them as that one person's feelings about her own personal experience. She had problems with the colostomy coming loose and it made her fearful of going out. She has regrets about her life choices, but admits that she had to "get over being squeamish." She did not say it was worse than death (like I have heard some people say). I don't see it being any more offensive than the ads with people with... [ more ]
Spooky The problem is, I sort of see both sides here. While it bothers me to see ostomies depicted in such an negative light and I understand why the ad strikes a nerve, at the same time, I don't think the ad is meant to stigmatize those with ostomies as much as it is meant to show people who choose to smoke what could happen if they do not curb the habit. This ad targets a very specific audience. While an ostomy greatly improves the quality of life for many IBD patients, the difference between... [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Colorectal surgeon in NYC area?
L lrdo
Mewow Dr. Bruce Gingold In Manhattan. Saved my life in 1991!!! [ more ]
TeensMom Actually my son has the same issue. After checking for strictures the surgeon sent him for a test called anal manometry. It was done in the same Mount Sinai Hospital by the office of Dr Gina Sam. They said he has pelvic floor dissynergia, his pelvic muscles don't work in unison or relax sufficiently, or something like that. The treatment is physical therapy for pelvic floor. Too soon to tell if its working. [ more ]
TeensMom Dr. Sergey Khaitov of Mount Sinai Hospital did 3 surgeries for my son. He is a great surgeon and a wonderful person. He takes insurance. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Rectal cuff cancer
J Jpouch2001
TE Marie Dear Rebel Sue, I've had pain in the perineum and bleeding coming from a place I thought was up a half inch or so into the vag. I've done many self examinations with a mirror and medical gloves on, sorry it TMI. I isolated the exact place where the blood was coming out - just put TP in different locations until I knew where the blood was coming from and I could feel a bump. Since that is a very sensitive part of our bodies I imagined it to be larger than it actually was . I also have chronic... [ more ]
Rebel Sue Yeah so I think the abscess hypothesis might be worth pursuing. I made a doctor's appointment but it isn't until April 17th. I might have to call again and try to be seen sooner because this morning I believe it got bigger and it is sore. I don't think most tumors grow that fast. I was pushing harder than usual to go this morning which isn't normal for a pouch at all. I'm worried. It's sad that my first thought is, I hope this isn't too expensive. My second thought is, I hope I don't have to... [ more ]
CTBarrister RebelSue asked in her post what the outcome was for JPouch2001. Answer is JPouch2001 hasn't posted since March 2013, so we don't know. [ more ]
See all 33 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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