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J-Pouch ForumsGeneral Discussion
Finally got the coveted flagyl...pros and cons
K Kia
Kia As always, thanks for the very helpful information. And, Jan, yeah, I am over the VSL thing. If they get the denial overturned and I can fill it tomorrow, great. If not, I'll wait to see what's in the cards with our new insurance that's effective 3/1. Thanks for providing perspective! [ more ]
Jan Dollar For me, alcohol and Flagyl is no problem. I'm sure it is one of hose individual things. Jan [ more ]
CeeeeCeeee My only complaint about Flagyl is that taking it pre-empts my nightly martini! [ more ]
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J-Pouch ForumsGeneral Discussion
American diet, getting away from it
V VHDan
LC Have you tried blending your fruits and vegetables? I didn't eat a lot of fruits and vegetables because they would sometimes block me up (salads are an exception for some reason). My mom just gave me her Vita-Mix since she wasn't using it and its been amazing. I can eat anything blended in huge glasses and not have any adverse pouch events I was making spinach, apple, orange, berry smoothies and I didn't even get gas. Also its a lot faster than cooking them to mush. [ more ]
TE Marie PlantFusion has been the best thing that I've changed to as a vehicle to get protein and those darn fruit servings into me and a banana is usually in each one as well. I use mostly vanilla but there are a few other flavors, chocolate is the only one I've tried and It is awesome with banana, peanut butter and milk. My friend has been staying with us this week and we've been modifying our recipes to be gluten free. It hasn't been hard to do and the food tastes great. She put herself on the... [ more ]
VHDan Thanks for the advice so far! Suebear: I'll definitely look into quinoa and amaranth; I'd heard of quinoa, but hadn't taken the time to try it yet. I have canned pears in my fridge, waiting to be tried; I've had them in the past, and definitely had a better time than with raw produce. Soup is normally okay, but I'm basically obsessed with being able to somehow "bite into" the food I eat, especially at dinner, so they're always a hard sell for me, haha; this might have to do with all those... [ more ]
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J-Pouch ForumsGeneral Discussion
New to this process
BreannBreann
TE Marie Hi Breann, It might help for you to go to an Ostomy support group. Your hospital might have one. Hopefully you had an ostomy nurse an she/he can direct you to where and when a group meets. It's a lot to deal with in a few months. You don't have to rush into decisions and can stay at your current stage as long as you want to unless there is some kind of rectal problem. Welcome to the site! [ more ]
Cody44 Hey Breann, You sound a lot like I was. I was 17 when I had my first surgery due to UC. I had my colon removed and j-pouch installed but had the illeostomy for 9 months. I will not lie to you, I hated it, like people say it's trial and error on food, but I never found anything that was great for me. Then I had my next surgery and started using my J-Pouch, and, at first, I didn't like it either, but after a few weeks of my body getting use to it, it got better, and better, and better, and... [ more ]
Becky Boo Breann, First of all, good for you for reaching out -- you'll find lots & lots of help here, and will learn quite a bit about what to expect post-takedown. I'd caution you about one thing: many who post here, post because they are having issues and need help. Try not to let that scare you. Many of us j-pouchers are out there living healthy, happy lives with our j-pouches. You do have a long road ahead of you, keep reaching out for support as you need it. Also, if you haven't found it... [ more ]
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J-Pouch ForumsGeneral Discussion
when do you have night incontinence?
fqfq
lovedby2 I'm 4 months post op from my takedown surgery. Only time I had full on blow outs was when I was admitted back into the hospital for severe stomach distended. I think because of the IV, medicationst, and sleep meds they gave me... Plus when you're hooked up to an IV, the process of getting up, unplugging it, and walking, not running, to the bathroom takes too long. At home, for the first month after being released, I wore a thin, night maxi pad as well... Also placing it further back in the... [ more ]
bemeyer Unfortunately, I suffer from overnight incontinence as well. I had gone 5 years since my having j-pouch without suffering from this problem. My scope indicated a little pouchitus, for which I've been taking both Cipro as well as Flaygl but haven't shown much improvement. [ more ]
JeffDC They occur for me maybe once a month or two, and usually very late-maybe 5:00 AM. It will happen when I have a really bad night and sleep exhaustedly through the "you better get to the bathroom now-signals. [ more ]
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J-Pouch ForumsHelp! Need advice now!
possible fistula please help
BeckyMBeckyM
BeckyM I went to the urooncologists yesterday and he said i had a tumor growing, It is the sie of a golfball maybe smaller right underneath my uretha, we arent sure if it is anywhere else yet, i have to go have a pet scan tomorrow and see a bladder dr and then off for a pet scan, im so afraid, i cannot believe that they didnt find this earlier with the ct scans and them putting me to sleep and doing a pelvic exam, i just need prayers and support and i am so gpad that i have this site to come to, ty... [ more ]
Jan Dollar Thanks for the clarification. But, yeah, you can still have a fistula without your rectum or pouch. Unusual without IBD. I see you have FAP. I wonder if you have a bartholin gland cyst? Fairly common. http://www.aafp.org/afp/1998/0401/p1611.html Jan [ more ]
BeckyM Thank You Jan and NJK, I first wanted to say that I do not have a pouch inside, I had to have all of my rectum removed and my large bowel,I Have a permenant ostomy. I go on Thursday to see my obygn again, I am hoping at least he can tell me what this new lump is that came up, I am worried about infection or septic issues, I do not run a fever and i do not feel ill,I cant sleep at night cause I burn so bad, I am applying a barier cream they gave me at the hospital when i was admitted.I soak... [ more ]
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J-Pouch ForumsPouchitis
New Hope for those with Chronic Poucitis
P Pkitty
Rebe0505 brian just curious when you said all antibiotics stopped working ..did you ever try rotating them because any antibiotic seemed to stop for me too but when i started rotating them i have held my own for 3 years..not sure what future brings but thats it for now..so far i tended to stay on one until it began not to work and than moved to another in rotation..others switch on regular basis.. [ more ]
Brian P Just joined the group. Had my J-pouch since 1998 and have been battling pouchitis just about the whole time. I've been given all the different antibiotics but all of them stop working. Just got a scope last Friday at CC under care of Dr. Shen who is the best. He didn't like what he saw. Took me off Xifaxin and put me on Entocort. I'm worried that I'm heading towards pouch failure. Does Entocort work. I hope so!!! Brian [ more ]
Scott F Entocort can have any of the steroid side effects. The systemic absorption is less than with oral steroids, so there tend to be fewer/milder systemic side effects. [ more ]
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J-Pouch ForumsPouchitis
long term antibiotic usage
R Rebe0505
Rebe0505 thank you [ more ]
CTBarrister A yeast or fungal infection on the skin will manifest as a red rash, broken skin in places showing a trace of blood (looking almost like a scrape), and a burning/itching sensation. It's rare to get one on the face. I would see your dermatologist. My dermatologist scrapes any rash I have, looks at the samples under a microscope and tells me whether it is a fungal infection within 20 seconds of looking at it under the microscope. In 18 years rotating antibiotics, I have had only one REALLY BAD... [ more ]
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J-Pouch ForumsPouchitis
ct barrister rotating antibiotics/yeast infections,fungus issues
R Rebe0505
Rebe0505 sorry about confusing threads..and thank you! [ more ]
CTBarrister Rebecca, I think it would be helpful to confine the discussion of yeast infections and fungus issues from long terms antibiotics to the thread already started on the topic. It is confusing to have two parallel threads on the same topic. To answer your question, any antibiotic that kills bacteria can expose you to yeast infections. The broad spectrum antibiotics tends to killer a broader spectrum of bacteria and have a better chance of causing these issues. Any of them can. I rotate every... [ more ]
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J-Pouch ForumsGeneral Discussion
just a little thing i wanted to share
CF Charlie Fuller
JeffDC There is no wide range of emotions that we go through, or is there? hehe I prefer any beach to any hospital room. [ more ]
Charlie Fuller mgiamartino - that may be the best compliment yet! glad you enjoyed it. [ more ]
mgiamartino thank you. such a journey we've all had--patients and caregivers. your words made me smile, start to choke up a bit and, best of all, made me want to write again. [ more ]
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J-Pouch ForumsGeneral Discussion
pelvic floor therapy
L liz11
Very-Unique Liz11, I am going to a physiotherapist for pelvic floor therapy next week. I have had spasms with my pouch right from day 1, which was in 1998. I will post again after my first consultation. [ more ]
hurting Liz11 I had pelvic floor therapy 5 times since my orginal surgery 6 years ago. It is like going to the gyne every time. Feel free to PM me and I will go into more detail. Elaine- hurting [ more ]
liz11 seriously... has no one on this site had this done? My doc led me to believe it can be acommon problem after lots of surgeries. Would really like some input from someone who has gone through this. Also, jan, thx for the link. Can you explain how this would affect wound healing? Thanks so much. [ more ]
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J-Pouch ForumsGeneral Discussion
Hair Loss
A Av8erchic
debdaily12 I too lost hair after each of my 3 surgeries. Really freaked me out after the first one when I came back with fists full of hair while washing it! I thought for sure I would be bald by the last one, but I wasn't. It's been 6 months since the last one and my hair is growing back in nicely. I know it helps to know your not alone!! [ more ]
cassiecass It will grow back in time..Mine did. Discuss with a hair dresser what not to use cassiecass [ more ]
Av8erchic Thank you all for the responses! That makes me feel better about the situation to know I'm just not losing my hair for no reason at the ripe old age of 29...I will try some of the things that were suggested and see if they help. I'm not vain by any means, but I hate thinking people can see the little areas on my head that are thin on hair! [ more ]
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J-Pouch ForumsGeneral Discussion
Tired all the time - watery stools
R Rosco79
Jan Dollar The problem with starting two different treatments at the same time is that if there is improvement, you can't be sure which treatment was successful. Vitamin D is cheap and easy to provide, and it is fairly reasonable that treating it might improve fatigue and pain levels. VSL#3 is very expensive, and could even cause new symptoms (excessive gas in particular). So, unless you have a good idea it would help, it makes sense to me to wait. If there really is a bacterial issue that was... [ more ]
Kia Yeah, Rosco, that doesn't sound right at all. I am new to this, but from what I am learning, it makes no sense to me that he wouldn't have you take the VSL#3/wait to see what D does. Jan and others here are more the experts, so perhaps they will chime in soon. [ more ]
Rosco79 Hi Kia, No I thought the same and asked him and he said that he wants to see how I am after my course of vitamin D as he feels that this will do the trick on its own. I'm not so confident. I may just start taking it anyway as he said he will ask my doctor to prescribe VSL3 and vitamin D in the same letter. [ more ]
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J-Pouch ForumsGeneral Discussion
Recovering from J pouch surgery while caring for kids
L Laciep
lovedby2 Yes mine was laparoscopic. All three. It is much easier, faster healing, I hear. But it is the same for both as far as knocking the wind and strength out of you. I would get very winded easily, for example, just getting out of bed and walking down the hallway to the kitchen. It gets better after each surgery, even if it seems like it never will. Try to keep your faith and patience. Heidi [ more ]
Twinstar I had mine laparoscopically- the biggest incision was right through my c-section incision. But the recovery was much, much harder than from delivering babies. Not even comparable! Speaking of babies, I found that a nursing pillow was a great way to hold them on my lap and protect my abdomen and ileostomy. Mine is a big twin pillow with a strap on it so it stays put. My husband also works from a home office so towards the end of my recovery if I did have time alone with the girls he was able... [ more ]
Laciep Heidi, I am also having mine done in 3 steps. Did you by chance have yours done laparoscopically? Does anyone know how much easier, if at all, recovery is versus an open surgery? I hear recovery is a bit better, is that true? Thanks again for all the advice everyone. This is really helpful. [ more ]
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J-Pouch ForumsPouchitis
no more antibiotics!!!!!
Y yvon
Holly M Def. worth a try. I am on flagyl now. Have only been taking 1 a day , anymore than that actually seems to constipate me. Got to love this j-pouch life!! Always trial and error. Thanks for the tip. [ more ]
n/a Interesting ... I try to stay on as low a dose as possible (currently 125 mg. of levaquin, which is probably the same as taking none), and am back to night-time accidents so will add pineapple for the heckuvit. Thanks for posting. [ more ]
jeane Thanks for this post Yvon. I have been off antibiotics for over a month for the first time since my takedown in two years. I still struggle at times, depending on what I may eat, but after it passes through me I seem to bounce back. I love pineapple and do eat it but not every day. I have read about this and I am going to try eating it more frequently since you are having such good luck with it. That is great news! Glad you shared! [ more ]
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J-Pouch ForumsGeneral Discussion
Back to Cleveland
Uc-DanielleUc-Danielle
Uc-Danielle Thank you! I hope I get some answers and some relief. And hopefully I will see dr remzi [ more ]
Jan Dollar You may have a perfect pouch, but those setons can be a real bugger from what I have been told. Since you have experience with these things, I think you can trust your instincts on what is normal and what is not. Good luck! Jan [ more ]
Uc-Danielle No I wasn't told to. My pouch is perfect quote from dr. Shen but why am I in pain and blood? I just hope I get answers. And Vickie is caring not accusing [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abcess?
K kkohlman1
kkohlman1 Well, the CT was negative for abcesses..but they did see alot of scar tissue. They also saw an ovarian cyst. Doc says to wait it out...Thats fine I guess, but dosen't explain why I feel crummy. [ more ]
TE Marie Good as my surgeon blew me off about an infection and it ended up being a big abscess they had to cut out. I'm sure if he'd listened to me and prescribed more antibiotic after the first round didn't clear it up I would have avoided the huge one under my original incision and if it had not been there I wonder if I would have developed the incision hernia right there either. Good for you for not taking her opinion as you know when something is wrong with your own body. Please let us know the... [ more ]
kkohlman1 Scott- that is a great question...she really didnt tell me..she kinda just blew it off...I felt a bit like a mosquito being swatted at.. Jan thanks for reassuring me..Ive done alot of internet reading, seems to me enterococcus isnt so easy to get rid of...I have a CT scheduled for monday..it would have been for tomorrow,but we are preparing for an ice storm...FUN! [ more ]
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J-Pouch ForumsGeneral Discussion
Humira
ManchesterManchester
JJR Mine has always been delivered in an insulated container with ice packs around it, so assuming yours was delivered the same way, I would think an extra 5 hours should be fine. Deliveries get delayed, so I'm sure they account for that at least a little when packaging it. Calling nurse advice at Humira as Jan mentioned is probably the safest thing to do though. [ more ]
Manchester The temp here at the moment is 4C and in the house it will have been about 19C so not too hot and by god there certainly isn't any sun around here. [ more ]
Jan Dollar How warm did they get? I would think it should be OK if they weren't exposed to heat or sunlight. You may want to call the nurse advice at Humira to make sure. I've seen reports that say it is OK at room temperature up to 24hours. Hopefully, this is a learning experience? My health plan doesn't even allow mail order for biologics. I have to pick mine up monthly at the pharmacy. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hospital in Italy?
G Ginabello
mari60 is called the same J pouch o tasca ileale.If you like send me a private post if you are around here, I live about halfway between Roma and Firenze and if I am in town you could come and say hello...and let me know if you need information about hospitals and depending where you are I might find out,may be asking my doctor. [ more ]
Ginabello Thank you we will be in Calabria and then travel to Rome Milan and Venice.. I will look into the hospitals.. What is a j pouch called in Italian? [ more ]
mari60 yes,where in Italy? I had my J pouch made in Perugia and I think they are good there. In Bologna at the S.Orsola there is a IBD big center,probably the bigger in Italy.I think in every city you could find some good doctor who knows about it.Where are you going to be? Let me know if i could be of any use x you . [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abcess\Fistula?
G Ginabello
Ginabello Hi Becky I hope you get answers soon it is so difficult to always question what the doctors think. I feel great most of the time but like clock work every 4 to 5 weeks it starts to get sore and drain..I think I am going to go to the Mayo clinic I think I need answers and from what I read on this site they may just do that for me.. I am afraid that something is going on and my doctor says its fine . Please let me know how things go for you.. [ more ]
n/a Becky, it does sound like a fistula. I'm not sure if you're seeing a GI or have seen your surgeon as well, but - a good colo-rectal surgeon is who you want to see. My pouch-vaginal fistula was found via MRI after what I thought was an abscess developed. It's my understanding after much reading on fistulas that EUAs are actually the best way of finding a fistula and its path. An EUA is basically a super-scope done while you're under general anesthesia. In the meanwhile, I'd continue with the... [ more ]
liz11 oh Becky. I am so sorry you are going through all of this. It definitely sounds like you have a fistula. I don't know what insurance you have.. but you are correct, you need to keep hunting until you find a doctor that will help you. Can you do more research and tell the doctors exactly what tests you need? Have you had a perlvic MRI? Also - any possible way you can get to the cleveland clinic in ohio? I am sure they would figure this out quickly for you. If you cannot get there due to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
j-pouch pain
T tammy1
tammy1 im so frustrated it burns constantly.they are diong a mri friday.i guess if its crohns it will show up their also doing a blood test for that i hoe they wont dismiss the thought of adhesions ihope they will do surgery if thats the thought and everything else turns out fine this constant pain is bad althou the predisone seems to be helping some but still not taking the pain away [ more ]
Jan Dollar If you are in serious pain and completely blocked, you need to go to the ER. It could pass on its own, but sometimes it can become a surgical emergency. If the pain is not that bad, you can try riding it out, stop all solid foods, and move around a lot. Jan [ more ]
LC You should go to the emergency room if the pain is unbearable and you aren't pooping or able to eat. I don't think a flare should hurt that bad without other symptoms. If its a pinching burning kind of pain that comes in waves its probably an adhesion. I had problems with them before I had laproscopic surgery to remove them. My doctors indicated that they tend to get bad 3-5 years after having surgery. My doctors sounded nicer and gave me a small number of morphine pills to take if the pain... [ more ]
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J-Pouch ForumsGeneral Discussion
Incisional hernia repair
T tampav
tampav Kathy, I had the dry heaves on fri night and sat. Hadn't really been able to eat anything . I did have a bm this morning at around 7 am, and that was a relief. I stopped pain meds now because I think they were causing most of the nausea, and the pain is bearable. Drinking pedialyte and water. Had a bowl of cereal. Think I'm turning the corner (fingers crossed) Thank you very much [ more ]
kathy smith I wonder if you could be experiencing ileus. If you haven't had a bowel movement since Thursday (or Wednesday), it may be time to give the doc a call. Yes, it's a matter of time before things start working again, but I think you've passed that goal post. I know you're taking zofran, but are you throwing up? If so, you really should get to the ER. I hope this resolves very soon! kathy [ more ]
tampav Thanks Scott will try that. [ more ]
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J-Pouch ForumsGeneral Discussion
Weight Loss HELP needed
R russell3
JillM Travel can be a real killer for weight management and activity. Have you tried the travel weights or yoga products? Do you have a smart phone or ipad you can download a short yoga routine to? 20 minutes can make a big difference in getting going. Gentle yoga might help stretch things and relieve some aches too. I like Rodney Yee for beginner yoga that is easy to do but effective - its not the celebrity hot yoga that would kill a person just starting! Also, you don't say how old your son is,... [ more ]
Scott F The "magic" for me was adding physical activity outside the house (away from the kitchen!). It also helped the a couple of times a week I had to eat a light, early dinner so I wouldn't have a full stomach when I started. My daughter lured me into martial arts. It's not for everyone, but I lost 40 pounds that I'd been stuck with for over ten years. I was getting some sort of exercise six days a week (most weeks), and trying to eat mindfully (e.g. fruit for a snack). When my activity level... [ more ]
skn69 Russell, First off, so sorry that it is has gotten out of control...it is very hard to put the worms back into the can once you have opened it...harder still when you are battling so much stuff...But it has got to be done whether you like it or not...it is not your health but that of your child that is in play here...and his image of his mom...he needs a role model and you are it. I agree with all of the others here, no regime is going to work if you stay sitting on your sofa. You need to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
New member
L L.DL
TE Marie Hi L.DL, I see what you mean, you have a doctor that is discussing the possibilities intelligently and not making decisions for you. Condescending medical professionals are the worst. I thought my new Neurologist was talking down to me the first visit. I only went back as he comes highly recommended and while he didn't tell me much about the results of his examination the first time he did the 2nd. I'd guess you really need to have the fistulas fixed. I've read about ladies on here that have... [ more ]
L.DL Hey Te Marie, Thank you for your reply, I'm sorry to hear about all your surgeries and I guess we're all champs for getting it though. I'm so glad I came across this forum, it really helps reading about everyone, we often feel alone. I have met a lot of patients in the hospital where I've had my surgeries. I was asked by my stoma nurse to go and speak to people who were going though have to have ileostomies or considering having the pouch. So that was my only support group for me. I will try... [ more ]
L.DL Thank you Jan for your reply, and thank you to all I'm new here and just learning on how to get around the posts ,and also reading about everyone else'sissues really helps us get through our delemas I'm really worried about this procedure and as far as knowing how far up the fistulas is, the old dr. Never really told me how far up it was. Anyhow this new dr. Is now sending me to a gyno. He works with who deals with these issues.I guess maybe to see how far up it is? Anyhow I'm gonna give... [ more ]
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J-Pouch ForumsGeneral Discussion
How to increase awareness?
K Kia
cassiecass KIA Write to the Joint Commission .Hospitals are reviewed on everything.Write your story.THEY LISTEN.without their approval Hospitals do not get their certifcations to run their business.The Joint Commission approval means they are given a GOLD STAR. Also in NYS you can write the Dept of Hospitals , The hospital you were in can be revisited and their policy on discharge information can and may have to be changed.They can be fined. Remember we in trust our lives to them.We should be told it... [ more ]
skn69 Spooky, that reminds me of the k pouch pamphlet that had someone water skiing, diving into a pool and ski diving or some such (why does one need to show ski diving to a person about to have their colon yanked out?) Sharon [ more ]
Spooky My surgeon gave me a fairly comprehensive booklet about the j-pouch, which, although brief, did provide details about the common complications, diet, etc. Of course, even when details are specifically spelled out, it's hard to really relate to the whole experience from a booklet, so he also put me in touch with another j-pouch patient who was willing to call me and talk about her typical days. That was quite helpful and did ease my mind, because it actually gave a HUMAN experience. So yes,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
New to having a j pouch and not coping well - help!
S StephanieK
Kia I'm sorry you are struggling and I hope it improves soon. I'm sure you'll get a lot of great relies on this post. This site is great. I'll just add my two cents....which works for some, but not for everyone. For me, I can't add fiber. It increases gas/bloating/discomfort/frequency/butt burn. In fact, I eat a low carb diet and only eat whole wheat bread/pasta. For me, that greatly reduced all the negative symptoms. That being said, some people do better with the added fiber. It really is a... [ more ]
Becca67 Hi Stephanie, I am pretty new to this site and I hope this isn't too long winded as I tend to ramble. I am about 3 months post take down and struggled so much up until about 2 weeks ago. I was at my wits end. I was averaging about 15-20 bowel movements a day. Suffered terribly from constant spasms that would incapcitate me for hours. I wont even mention how irritated my rectum became. I had tons of gas that seemed to irritate everything no matter what I ate or used to avoid it and didn't... [ more ]
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J-Pouch ForumsHelp! Need advice now!
In search of good nutritionist in NYC NJ area
JakesmomJakesmom
Jakesmom Thank you All! [ more ]
vstRN I was also going to suggest Colleen Webb at NYP. She is great although I agree, she may just see established patients. [ more ]
liz11 Awhile back, when I was struggling with nutrition, dehydration, malnourishment, weightloss, anemia... I found an internist who specialized in nutrition issues for IBD patients. She worked in the IBD center with other IBD GI doctors. I had tried nutritionists and registered dietitians in the past but they never really seemed to understand the limitation of people with missing body parts! This particular doctor I had.. truly turned my life around for me at the time. She is not in your area,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Skin Irritation
L LisaB827
Becca67 Hi there...When I had my ileostomy I struggled for the first couple of months with maintaining a good seal. Sometimes had to change the appliance 2-3 times in a day because of leaks. Unfortunately for me the placement of my stoma ended up being in a weird place, my stoma retracted and I was also in competition with a wound infection that was right next to my stoma site that would drain and compromise the seal on my ostomy appliance. I met with the wound clinic and ostomy nurses and had to... [ more ]
CTBarrister I went through the same thing as far as skin irritation. I changed the appliance every day and could never get a good seal for whatever reason. I ended up with a yeast infection. My recommendation would be to see one of the ostomy nurses at Mount Sinai Hospital. They are the best. They can possibly help you on strategies for a good seal. They could seal me for a week. [ more ]
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J-Pouch ForumsGeneral Discussion
Low potassium earlier, now low phosphorus
ConnieConnie
Scott F When potassium is very low or very high it can cause quite dangerous heart rhythm problems. Of all the electrolytes, potassium is the one most likely to be treated as a very urgent matter, with no time to lose. [ more ]
CTBarrister I had to have this immediately after my colectomy when my potassium shot down to alarmingly low levels. In those days (1992) Mount Sinai of NYC did not administer potassium by IV because of the risk of inducing cardiac arrest (in fact, potassium chloride is the critical ingredient in lethal injections in states which administer it as a death penalty punishment). As I recall liquid potassium is blood red and has a taste that gives vile a new meaning. I am puzzled as to the reason for the... [ more ]
Connie CT scan next week to check the healing progress. If or when it's far enough along, they will remove the infected plate. Then hopefully the pain meds will end sometime after that. It has been an unbelievably long haul--three years. The orthopedic surgeons claim it's "worth it" to save the toe, but no one has any idea of the extent of the psychological toll--on all of us, really. I did get through to the executive level at Blue Shield of CA. They did another peer review, the results of which... [ more ]
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J-Pouch ForumsGeneral Discussion
Apprehensive about making the pouch...
P Pluot
kathy smith If you're not ready for the next surgery and you're happy with life as it is now, you can put off the next step for quite a while. Some people have waited years. And even if you do schedule the next surgery, you can cancel it right up until the time they put you under. (I'm sure they don't like that but you're the customer.) Often just knowing that you have that control will allow your brain to get behind the surgery. It seems to me that most of the permanent ileo people here REALLY like... [ more ]
liz11 oh my liz. I felt exactly as you are describing. I had to wait a minimun of 6months between step 1 and 2 because of how sick I was. But during that timeframe I felt so much healthier. I was active, gained weight, was eating anything I wanted, etc.. I spoke to my surgeon about just sticking with an end ileo. .. and he truly laughed in my face. Yes he laughed right at me. He said why would a young, attractive, fit female want to live her life with a bag attached to her. He made me feel... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch-Friendly Food Ideas
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liz11 oatmeal (the real stuff not packages) fresh mashed potatoes - not instant baked potates with cheese mac n'cheese with other stuff in it - like squash all sorts of creamy,pureed soups - roast or cook vegetables and potatoes, put them in broth on the stove, hand blenderize them, add greek yogurt or milk to thicken smoothies made with greek yogurt and fruit - even just bananas and pb if you are afraid of blended blueberries, etc. sweet potatoes roast chicken and over cooked veggies bananas... [ more ]
Space-baby I seem to be the only one who can eat chocolate with no problem, and I do mean gobbling down a 100 gram bar of 70% dark choc right after lunch. I'm set for the afternoon of work and it does not increase my bm's. Yoghurt has been my best friend. And Quarck. Fatty foods and butter are not great for me. Oh, except for fries. French fries have been really good. In fact, my pouch seems to really like it when I eat at McDonalds, but I don't do that very often at all. Oats are very good and my... [ more ]
LC I've had my pouch for a while so I can eat almost everything. For those of you who get sick eating tomatoes, have you tried peeling them? Tomatoes, peppers, and eggplant bother me (pouch pain) but not when they are peeled. I eat salads all the time and while they loosen me up, it's usually a one time thing. I also drink coffee but I try to keep it to one cup a day or so but that is more because I get some stomach discomfort than pouch problems. In fact, my perfect breakfast is yogurt, a... [ more ]
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J-Pouch ForumsGeneral Discussion
Can't put on weight - HELP!
R Rosco79
liz11 try getting rid of milk. Also reduce your sugar intake. For example, most peanut butters are full of sugar. Try a natural peanut butter with no sugary additives. [ more ]
Rosco79 thanks, I'll try upping my protein. I feel very bloated and then not hungry for hours after I drink milk or have peanut butter so I can't really go for the shake [ more ]
liz11 think protein. Make sure that you are eating lots of protein and every one of your meals..meaning 5 or six meals a day. [ more ]
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J-Pouch ForumsGeneral Discussion
How long between pouchitis bouts is a recurrance?
H HLL
HLL Thank you for all of your comments, everyone. I saw the surgeon today. I had forgotten how thorough he is! He thankfully used a pediatric something or other when he checked my pouch. He could see granules and no signs of Crohns but said it can be hard to tell. He fired a letter off to my GP saying no Biaxin, stick with Flagyl and then Cipro. Right now he has me doing two weeks of Flagyl only. If I'm not feeling better in two weeks he will call in Cipro for another two weeks. If I'm not... [ more ]
notsotough The diagnosis of chronic pouchits is not only based on symptoms although obviously important but also the histology form any biopsies. Hence it is important in the face of continuing problems to be seen scoped and biopsied. This not only affects treatment but also funding of the same? Hope that is helpful [ more ]
HLL It's a miracle! My surgeon's secretary fit me in tomorrow afternoon. That's unheard of. I cancelled my GP appointment but I will still print out the info for next time. Thanks, Jan! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain at stoma site - 7 mos post-takedown
B BethT
TE Marie I have pain there on and off all the time and think, in my case, there must be a narrowing in the part of my small intestine they "looped" for my temp ileo. Know one had told me this, just my overactive imagination/imaging. I also have adhesion pain there and other abdominal places. I've had 5 abdominal surgeries so had some adhesions going in for my j-pouch surgeries. I have not been very active since my surgeries so I guess you might have pulled something in a weakened area that might just... [ more ]
kathy smith I'm wondering if it could be adhesions. If so, you could see a therapist familiar with myofascial release . Sometimes surgery is performed but if one is prone to forming adhesions, more adhesions could form from the surgery. Sort of a viscious circle. kathy [ more ]
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J-Pouch ForumsGeneral Discussion
Please help me figure out how serious this is
LionsPrideLionsPride
TE Marie I'm sorry you are having so much going on at the same time. The stress has to be awful. Jan and everyone has given you great advice about your health. I'd like to add to please do your best to obtain the new job or promotion. Since you can not predict your medical problems and they might easily be solved I say go for it. You can always turn down a job but if you don't fully commit yourself to obtaining it in the first place you'll feel bad if you don't get it. I'm concerned about your blood... [ more ]
Lorsall Do you notice yourself getting really full after a relatively small amount of food? I ask because the slow transit, bloating, and pain are all hallmark symptoms of gastroparesis. You can ask about a gastric emptying scintigraphy, which is an easy, albeit boring test. [ more ]
Spooky Lionspride, sorry you are going though this. I see you mentioned bleeding. I wish I had some words of wisdom, but I just had an MRI enterography today because I've had some episodes of bleeding going back to October, in some cases quite a bit of blood. I will certainly report back any findings, as they might shed some light on what is happening with others here as well. [ more ]
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J-Pouch ForumsGeneral Discussion
Happy Anniversary to me!
RM Randi M
TE Marie Congratulations! Have a great vacation and remember not to drink the water, it might cause diarrhea [ more ]
Scott F My travel advice would be to avoid bicycle trips in Thailand until you've mastered asian squat toilets. I can personally vouch for this advice, though it's unlikely to be of much use to you. [ more ]
mgiamartino thanks for sharing--and happy anniversary to you. enjoy your trip, you deserve it [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bitchin about (Narcotic-induced) Itchin
KelseyHey2308KelseyHey2308
Jan Dollar Too bad they did not take pictures and just have the plastics guy look at that, and maybe save some time, since this would just be looky-loo. I am flabbergasted that your choices were either the surgeon you never want to see again or someone who doesn't actually do surgery!? You'd think you were in the middle of nowhere. The twilight sedation thing doesn't sound wrong. But, if this is turning into a plastic surgery thing, then I guess you are sort of stuck. Maybe you need to move to... [ more ]
liz11 Well a few months ago my local gi discussed taking over the wound care. I brought it up with shen and remzi. And he discussed it with them directly at the big conference in december. I was all for it until we found out he wanted me in there once a week under twilight sedation and he would be doing it but with a surgeon present. Turns out the "surgeon present" would have been the guy who built my original jpouch wrong or a non-colorectal guy who didnt really do surgeries but was more of an... [ more ]
Jan Dollar I agree with your husband. The guys at the top have no idea what is going on in the trenches unless somebody gives them a clue. One of the problems with big institutions, it is easy to fall through the cracks. Those folks assigned with fielding phone calls are pretty much limited by the marching orders they are given. They often do not have access (or time) to research the medical record. So, again, it falls to the attending physician to leave clear notes for everyone, the patient, the... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch Scope
K KiwiPoucher
Jan Dollar Oh my! Well, can't blame the staff then! Perhaps you can ask your surgeon to "enlighten" this fellow about the difference between an ileal pouch and a colon! Or, you may ask him if he requires this prep for an ileostomy scoping, since it is essentially the same organ. Even when my docs were still prescribing the purging prep, they would tell me to take half a bottle or whatever cleaned me out. Good luck! Jan [ more ]
jpouch2008 In my case, I was with my GI in his office as I have just gone from surgeon's care back to my old GI who works at a diff hospital. He told me to book a scope with reception and I asked him about prep,etc. He insisted it will be full prep as it used to be. I explained that I hadnt had that in the 5 years of having scopes with surgeon. He would not even listen. [ more ]
Jan Dollar Often, it isn't even the doc issuing the instructions. He schedules a flexible sigmoidscopy and does not think to issue special prep instructions. Then the office assistant sends out the standard instructions. It can take some leg work to get a message back to the GI for clarification. That's why I LOVE email access to my docs....no middle man, lost in translation, yada yada... Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Jan & others...autoimmune & face fillers, lasers
H hattie
skn69 Wow!! Subzero...you sound like you have done your research well on this and that the results are great! I am a ball of scars all over my body...legs (2 gracillis muscle grafts = 16 horrible scars), abdomen with 9 horrid scars + all of the laporoscopy scars that look like just as many bellybuttons all over the palce (they sunk!), face and body from cyst removal everywhere (I grow cysts that infect and need to be removed but they leave the darn things open to drain afterwards...you get the... [ more ]
Subzeromambo Sharon, I am extremely happy with the results. When I got to the er in Minnesota, they had to cut off the blackened skin and treat the frostbite. Four months later I was ready for cosmetic treatment. I had two treatments about four weeks apart for the frostbite by a plastic surgeon. He did inject collagen and steroids under different parts of the scar tissue. The laser did not hurt at all. Right now I am the only one who can still see damage. I started seeing improvement in two weeks after... [ more ]
AllyKat I saw my dermatologist recently about fillers and she suggested jeverderm as well. She said no problems with auto immune disease. Have fun and look great at your sons wedding. Wish I did them 2 years ago for my daughters. Might treat myself this year for my OMG 60! [ more ]
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J-Pouch ForumsGeneral Discussion
3 Months After Takedown
D daveski
D. Nocerino You're an inspiration! I got the take down and j pouch 2 months ago. Still having difficulty adjusting and still going frequently, but I wanna hit the weight room again and start training to play hockey! Keep going strong!!! [ more ]
KCookie Thank you so much for posting! Congrats on your success. I'm so glad to hear positive results, especially when my husband is deciding between jpouch and perm ileo. Thanks again. [ more ]
TE Marie For those considering the operation this is the way things go the majority of the time! Congratulations Dave! [ more ]
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J-Pouch ForumsGeneral Discussion
Xanthan Gum
JD Jeff D
TE Marie I took the "clear capsules" with the actual metamucil or generic powder inside of them. They were not a hard pill. Nothing came out looking weird at all. I passed some strange stuff out of my loop ileostomy so didn't take chances with hard pills or supplements of any type while getting the surgeries and after. [ more ]
Scott F The Benefiber brand has been off the shelves for almost a year now. It should come back at some point, and store-brand competitors are available. If Metamucil isn't effective enough, Konsyl reportedly has more soluble fiber per dose (it's more like Metamucil than Benefiber). I had poor results with the Metamucil capsules, since they didn't mix sufficiently, and came out looking like exploded capsules. The Metamucil powder works for me. [ more ]
TE Marie I think Liz's idea is great as we are not suppose to drink the fiber with as much water as coloned people. We are using it to bind our food and slow the digestion process down. I used the capsules instead of stirring it in liquid and found 3 before 3 times eating a day worked for me. 5 capsules = 1 serving of metamucil. I gradually cut it out as I didn't need it as my pouch matured. [ more ]
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J-Pouch ForumsGeneral Discussion
c diff
D drcvb
TE Marie Cipro is a good antibiotic that I use to take a lot. It is what I was taking right before I contracted c-diff years before my surgeries. I don't know all the names of antibiotics that can lead to c-diff are. I forget what I was taking during and after my surgeries, for my abscess etc. but it wasn't Cipro. I wasn't on any antibiotics this time I contracted it. My immune system is probably weak and invited it in. In any event I got it again in my pouch and having it and cuffitis at the same... [ more ]
Pouchomarx interesting regarding the cdiff. I was told and have been on Cipro a few times in the past and it was prescribed by either Shen or his colleague Lashner at CCF. I had cdiff right after takedown [ more ]
TE Marie I'm taking VSL#3DS probiotics and recently started taking "s.boulardii" the s stands for "saccharomyces". The s.boulardii is a probiotic strain not included in VSL#3DS. This is a specific probiotic that is good in fighting c-diff. Jan directed me to information on this. I ordered it from amazon for $14. 90 (non dairy) 5 Billion doses and the suggested 1 capsule twice a day. There were several different brands. After opening it is to be refrigerated to extend it's shelf life. I hope it's... [ more ]
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J-Pouch ForumsGeneral Discussion
Research question
JS Joe S.
CTBarrister -The role that diet plays in UC and specifically the growing debate over whether reducing consumption of carbs, sugars and processed foods can ameliorate symptoms. This debate may be a hotter button topic in the context of pouchitis (Dr. Bo Shen is a leading expert who advocates reduction of carbs and sugars in pouchitis patients), but it has some interest with UC as well. One of my best friends just learned his 6 year old niece has UC and he and his sister have been getting into fights over... [ more ]
Spooky - Genetic link to UC/IBD - UC vs. Crohns and/or indeterminant colitis: flipsides of the same coin? - what percentage of patients eventually have their diagnosis changed? How often after the initial dx is the 'new' diagnosis confirmed? Also, did the dx actually change, or was the patient initially misdiagnosed? Or, is there really not much difference in UC vs. Crohns other than how the disease originally manifests? - Is UC really more prominent in northern hemisphere, western nations, or is... [ more ]
Rick822 Why fecal microbiota transplantation be not being offered as a treatment and possible cure for uc. Thereis an excellent.article at i have uc/fmt [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hernias?
B Bethie
Jan Dollar Sometimes hernias can be sneaky, but they usually are pretty straight forward to diagnose. If she holds her breath and bears down, there should be a fairly obvious bulge that is visible or palpable if you hold your hand over it. Often, hernias do not cause pain, so pain is not a primary symptom. Abdominal pain can be caused by a variety of things. It could be she pulled a muscle during her workout (happens to the best of us). It is not uncommon for folks to get a bit too aggressive in their... [ more ]
Bethie Thank you both for the info - I didn't want to walk into the doctors office without some prior information; as it turns out he doesn't think it's a hernia, he felt absolutely nothing, although if it continues to hurt she will eventually go for an MRI - she stopped working out because she was in pain...more than likely she was using too much weight in her workouts. not a bad problem to have after everything else!! [ more ]
Jan Dollar I had an incisional hernia that cropped up a few months post op. I ignored it at first because I did't want to deal with it, because I had to deal with other complications. I brought it up to my surgeon about a year post op. He gave me the option to repair it or live with it, and I chose to repair it. It was elective because there was no entrapped bowel causing pain. It was a simple repair, but did require mesh and an overnight stay. I was up to my usual routine the day after discharge. [ more ]
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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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