Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsHelp! Need advice now!
J-Pouch and acute pancreatitis
F feirs1
JeffDC For the first two weeks out of the hospital, my diet was low fiber, low residue. Just mild stuff. Fruits and veggies were a no no if they were fresh (bananas were ok). If the fruits were canned and the veggies steamed, I could do that. The rule of thumb were that if the veggie could be cut with a fork, it was ok. Your son may have had the colitis worse than I did; my diet was not too restrictive. Try this link: http://www.healthcentral.com/d...c/92/12690/soft-diet [ more ]
See 1 reply...
J-Pouch ForumsOstomy & Skin
Perfect Pooping Position
P PoucherInTO
PoucherInTO AHAHAHAHA Donna! That's hilarious, thanks for the good laugh [ more ]
Donna H Ha Ha, Kristy. You are funny! As I said above, I discovered I can empty without pulling my pants down by facing the toilet tank. Well, I was at a restaurant last night and I did my duty and then had to reach backwards to get the tp which is now behind me because of my position. It was a smaller toilet than mine at home and it was a bit of a reach and when I did, I fell right off of the toilet and onto the floor. I started laughing because what else could I do. It was funny but I was glad... [ more ]
PoucherInTO OK All, so here I was thinking that my butt must be REALLY large because I just couldn't get the right amount of space to cleanly empty my bag if sitting on the toilet. Then I realised the problem is not with my booty, but my toilet is kind of round and small. I used a public toilet which was shaped kind of like an oval and there was so much more room! And for those with a sense of humor, "Does this toilet make my butt look big?" Hehehe. [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
Not Sure What is Going On
C ChicagoDrew
ChicagoDrew Thank you!! Greatly appreciate. [ more ]
skn69 Could be as simple as a case of gastrointeritis or pouchitis or food poisoning...stick to fluids, consomés and soups to keep your sodium up and drink something to keep those electrolites up. If it lasts over 3 days I would consult the doctor or at least give him a call. If you get any severe bleeding, sudden pain or fever then I wouldn't wait and I'd head over to ER...hope that this is only a passing bug and that it leaves you alone for the New Year. Sharon [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Anal leakage
M Matt34
TE Marie I hope your appointment went well and your insurance woes are over! [ more ]
Matt34 No they have not made my j pouch yet. But it's gonna be happening very soon. Was getting new health insurance first cause my previous ins company cancels the policy end of dec. so new one takes effect jan 1st. I'm getting appointment set up with surgeon on Thursday this week to get scheduled for takedown. Hopefully will have surgery by end of January [ more ]
TE Marie I don't understand everything you are saying. Have they built your j-pouch out of your small intestines yet? In other words are you going to have a total of 3 or 2 surgeries? [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
2 weeks after takedown - still too many BMs
B bpp
ISeeUC My surgeon wouldn't let me leave the hospital until we got my BMs down to fewer than 15 per day. You're losing sleep and likely a lot of fluids as well. I suggest calling your surgeon to see whether he can help you now rather than waiting it out. Good luck! [ more ]
mgmt10 Yeah, it's a bummer to say it but 15+ times a day is normal so soon after surgery. It gets better I promise. I know the lack of sleep thing is hard but you should start seeing improvement as the weeks pass. My surgeon warned me that it's crazy for a bit after takedown. A lot of surgeons fail to tell their patients as to what to expect immediately post take down. Hang in there! [ more ]
bpp Thanks for the replies. I am just glad that I am not alone and it seems to be normal to go lots of times post takedown. My BMs range from 15-25 per day but I am more concerned about the lack of sleep. I will see how it goes for next few weeks and then speak to my surgeon on my follow up appointment. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
A month post-takedown, nighttime accidents?
A aliiien
ElmerFudd Leakage could be normal recovery, or could be pouchitis. Docs don't like to assume pouchitis this soon after surgery. The stapler they use for the ileal-anal anastomoses is big, so sometimes the stretching of things takes to me to get back to normal. As for the itching... determine if the itch is inside or outside the anal canal. If inside, I'm sorry to say you need to get some medicine up in there. I did this for months using Gold Bond Anti-Itch ointment (OTC). Anything with menthol and/or... [ more ]
Scott F Traveling tend to disrupt our diets, stress levels, bathroom availability, bed times, etc. Each of us varies in how resilient we are when these things are messed with. It's also possible that you've developed a touch of pouchitis, but I wouldn't start out assuming that. You might even have Traveler's Diarrhea. You don't say what you're already doing, so I don't know what to suggest adding/changing. [ more ]
Mark01 I'm coming up to a year post takedown and I still have problems with this. I find it helps if I don't eat for a few hours before going to bed. Also if you aren't already try something like immodium [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
I'm Soooooooo Hungry!
C CeeeeCeeee
CeeeeCeeee Milk of Amnesia! What a hoot! Gloria, I bet you have had endoscopies. Just another name for "scopes". Upper endoscopies check everything from the mouth down and into the stomach. (Maybe a bit further than the stomach....I don't know. Those of us with J-pouches have a lower endoscopy from the anus up through the pouch itself. I don't think the scope goes into the small intestine but I really don't know. [ more ]
Jaypea I work in a paediatric hospital and we use Propofol all the time. It is our anaesthetic of choice for most things. It is fondly known as "Milk of Amnesia" Merry Christmas. [ more ]
JeffDC CeeeeCeeee, I hope your procedures have excellent results. 3:30 AM is a God-awful time to wake up, and knowing what you have in store for the day is NOT a motivator. Hope you get back to your "normal" self quickly. [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Bowel adhesions won't go!
D D.Hunter
TE Marie No matter what the problem is something is wrong. Please see your doctor. You could have an obstruction, something twisted or I don't know what wrong. Could you please describe your pain and maybe someone will have advice. [ more ]
Scott F The adhesions themselves don't come and go. They have a tendency to form after surgery and stick around. They are essentially attachments between the bowel wall and the abdominal wall (or between separate sections of bowel). Normally the bowel should slide around freely, but adhesions can cause a section to twist or get kinked, which can pull or block the free flow of the contents. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
iron supplements?
B beckysmom
Chris M I get weekly infusions. Dr. is afraid that with all the other issues I have that an oral would just make them worse... [ more ]
beckysmom Thank you all! I'm off to the health food store tomorrow. [ more ]
AllyKat I take Florafix, It is a liquid all natural iron made from fruits and veggies. It does not upset your stomach or pouch. You get it in a health food store. I get migraines from the iv iron. [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
SIBO question
AllyKatAllyKat
AllyKat Fecal transplant was mentioned. Ugg! I started trying cutting out sugar and carbs, maybe I'm at 75 percent and added homemade kifer but...I'm losing weight which I can't afford to lose. I switched off xifaxan to pentasa for the time being. With all these holiday parties diet is hard. [ more ]
AllyKat CT, that is sort of what I have! Pooling at the dome or top of the pouch. Moderate inflammation. My GI said this is very common. [ more ]
Rebe0505 xifaxin did not work for me and sibo is present diagnosis..et barrister may have explained it best..could be both but diet could be a step in reducing your worst issues..go for it..see what happens few of us who are going for it see real improvement.. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Christmas fissure
P Pluot
grandmaof1 I was put on C-Diltiazem 2% cream. Maybe your doctor could call it in and have it made for you. I am so sorry you are going thru this. I know how bad they hurt and I feel so bad. Sending prayers. [ more ]
UjohnjC sorry to hear liz hope it gets better no advice for you sorry my pouch surgery not until feb but curios to what a fissure is ? merry christmass [ more ]
grandmaof1 My GI doctor had a compound made for me. It worked awesome to relax and let the blood flow to the anus area so it could heal. I have to look up the name of it. I am in my favorite place right now. The BATHROOM. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
something never experienced in 13 years! having trouble "going"
Chele Lee WVChele Lee WV
AllyKat I agree you should have this checked out since u r prone to blockages. In the meantime as a long time blockage sufferer I would apply heat and drink, drink, drink. This usually gets things right by me and I avoid the ER. I had surgery 4 years ago and that has helped a lot. I still get some small ones every so often. Hope u feel better, I've spent many nights in the ER and hospital since 2000 so I know how u feel. [ more ]
Scott F I think you need someone to take a look, ideally someone who knows how to spell "J-pouch." Maybe a stricture? [ more ]
Chele Lee WV Thanks for your response...same here. Feels like there is gas trapped inside behind the stool. Anytime I lay down I can feel and hear it inside like its moving around. Ive had blockages before and have been hospitalized over and over. This is different though and a bit scary. Not sure if I should go to the hospital or try to treat it myself with some of the other posts ive read on here by using mirilax and colase and grape juice. Dairy is a no no for me as well, but usually causes gas so id... [ more ]
See all 4 replies...
J-Pouch ForumsPouchitis
Sed rate
M MJFMJF
Jaypea It should do as it is a marker for inflammation. Be aware though that if you have any other type of inflammation going on anywhere else in your body the levels will be high [ more ]
AllyKat Yes, when I was fine mine was 25 and when I was sick last month it went to 40. It's been as high as 60 when the pouch is acting up. [ more ]
Jan Dollar Possibly, but it is not specific for the GI tract. Jan [ more ]
See all 3 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Bump
P Pluot
Pluot Went a lot better than I expected! The on call GI examined me and said he thought it was probably folliculitis but he wasn't confident enough to send me away so his office called the surgeons' office and got them to squeeze me in with the CR surgeon on call immediately. The surgeon was a total butt about having to see me (the first thing he said when he walked in was "Your GI made it sound like this was some kind of EMERGENCY" and then he made a snide remark about how I should have gone to... [ more ]
liz11 were your ears burning danielle??? [ more ]
Uc-Danielle That's how my fistula began and my surgeons dumb nurse told me to go see to urgent care and she said they don't cover that and turned our being a fistula. Better safe than sorry. [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Abdominal pain,gas and smell burps!
L LilMoe03
LilMoe03 He just woke up and he says his pain is gone and he is hungry and wanna eat . I made rice and steak today and he is eating it. Didnt give him metamucil, just his other regular meds. Lets see he uses the bathroom. His diarrhea seem to have went away. Just had a small accident while sleeping and was goey not watery. And no gas since he got up.or burps. If not tomm monday i call the dr . Thanks. [ more ]
beucfree Sounds like partial blockage to me. I used to get the very same symptoms, if it last longer, you may have to take him to ER and start IV to avoid dehydration. [ more ]
vanessavy what is his diet like? Could be SIBO (bacteria overgrowth), most likely not pouchitis since us with FAP don't seem to get it, a 1% chance of getting it so SIBO could be it. That is controlled by diet and an antibiotic. If nothing is coming out it could be a blockage, adhesions tend to do that. But I would call your doctor/surgeon since we can't diagnose him. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Natural ways to control diarrhea
T Taradars
Taradars Thnks Scott. Yea I could take whole package of Imodium and it wouldn't phase me. Go figure. Lomotil does work but I am wanting to get away from all the prescriptions. So far last two days of trying the pectin and being careful on what I eat have been doing ok. :-) hopefully it'll continue! [ more ]
Scott F If Imodium doesn't work then your dose may be too low, or you might get better results from Lomotil (I do). Not natural, though... [ more ]
Taradars Thanks guys. I am trying a pectin subst for now. Imodium In the past was liking taking tic tacs for me. :-(. May give it another try though. the oatmeal cookies are Probaly high in soluble fiber which helps bulk up your waste. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Fiber
K kubrider
Scott F Most folks take the Metamucil immediately before of after a meal, to give the stuff something to work with. Stretching my "construction material" metaphor beyond reason, if we're making concrete then Metamucil is the paste and food residue is the aggregate. I do take Lomotil at bedtime, and usually get a decent night's sleep. [ more ]
kubrider Thanks again Scott. I'll have to give Metamucil a try. Maybe before bedtime, I've slept through the night no more than 3 or 4 times in the last 5 years, I'm getting tired, haha........ [ more ]
Scott F Everybody is different. I happily eat green leafy salads, but I'm more comfortable with small ones. I eat fruit every day, in moderation. I don't try to find specific foods high in soluble fiber - I just supplement with Metamucil at a dose that seems to make my pouch happy. It's not nutrition, it's just construction material. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Physillium seed or husk?
AllyKatAllyKat
Jan Dollar Most people tolerate psyllium fine, but it caused a lot of gas for me and increased my frequency by quite a bit. It did thicken my stool though. I had better luck with Citrucel (methylcellulose). It did not cause gas or increase my frequency, other than the extra bulk it caused. I didn't stick with that either because I didn't feel it improved my function enough to be worth the bother. I am not sure there is any particular fiber supplement you SHOULD be using. Just experiment and see what... [ more ]
Scott F Psyllium *husk*. Brand names are Metamucil or Konsyl. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
pouch advancement!??
lovedby2lovedby2
lovedby2 This is all good information and I will be bringing this up to my GI and the Dr. That he has referred me too. I'm not going with my original surgeon, as you mentioned, because i want someone who has jpouch experience. I'm in pain everyday and can't stand more than 30-45 minutes at a time. I need help and I hope to find help with this new Dr. [ more ]
AllyKat Oh no you don't need your pouch remove, just taken apart, the anal area stripped and hand sewn back. I had what you had 14 years ago. The pain was so bad I would cry. Just make sure you find a doctor that has done a lot of these. Your surgeon may not have ever done any that is why he is taking removal and makng a new one. One of the complications is anal in continence so u want an experienced surgeon. Probably at a large teaching hospital. I did not have any problems after this surgery and... [ more ]
TE Marie I also got over the c.diff which was bad because I'd waited until my year to have anything looked at, that took me Flagyl off an on 8 months. I didn't get my IPS under control until a few months ago. It baffles me why I need to go on antibiotics sometimes to get it under control but I do. Once I started using prescription Imodium, Loperamide, like my GI told me to and changed my diet, on my own, to a softer one with less red meat I've been doing better. It's just been a 3 year observation of... [ more ]
See all 15 replies...
J-Pouch ForumsGeneral Discussion
so it's NOT crohn's?!
clz81clz81
AllyKat I recently had a liver cyst, the pain and it was tiny, but located near a bunch of nerves. I thought it was adhesions acting up. I needed it removed and have been fine since. I hope everything goes ok on Monday. Ugg, the pain until something was decided was the worst. PS, for 10 years my GI has been saying I had CD after every test came back UC. I swear she was determined to find that CD until I had adhesion surgery and the surgeon said there was absolutely no trace of CD. She never said boo... [ more ]
clz81 Scott, I re-read the script for the ultrasound. It does say adnexal mass :-) Doctor's handwriting is so hard to read. I know nothing about this stuff...will find out Monday. [ more ]
Scott F I'm guessing it's an *adnexal* mass on the ovary rather than an adrenal mass. The adrenal gland is pretty far from the ovary. In this context the word "adnexal" just names the general location and doesn't add any useful information. Congratulations (on probably dodging Crohn's) and good luck with your hopefully routine GYN matter! [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Dilation Round 2
P phonix2g
jeane This should help. You may need additional dilations to keep the anastomosis opened. I have had about five and my last one three months ago has been the best. I do still struggle at times with complete emptying which causes a few trips in succession but I guess it's just something you get used to. If there is no anal pain associated with that I can live with it. Good news for you. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
What is the actual Success rate for the Pouch?!
CM chris mitch
chiromancer I think this is right and is one reason why statistics are so misleading. Many people have such bad UC or other problems that even a poorly functioning J pouch is much better. Some people have such poorly functioning loop ileos that even a poorly functioning J pouch is better. My criteria would be if there was any contraindication for the pouch to not do it. That is not saying that it cant be successful but having experienced both a poorly functioning J pouch and good functioning end ileo... [ more ]
CTBarrister "Success" in my mind is measured by what came before versus what came after as far as quality of life. If success is defined as a J Pouch with no complications/pouchitis, then I would not be a defined success. Yet in my mind I was a success because surgery improved my quality of life and as my colon demonstrated when it was removed (it was close to perforating), surgery was ultimately a necessity and not an option. I have had to treat chronic pouchitis since 1995 and despite that, I consider... [ more ]
Goody2shoes Well. what can I say Chris - I had my operation done at a 'centre of excellence' in London - 2 stage, and it has been a year of absolute hell and total failure ........ I am stuck with a non working pouch adhered to my abdominal wall that will eventually have to be removed - and a permanent ileostomy that I absolutely hate - my 'reversal' lasted all of 4 weeks - and I was visiting the bathroom in excess of 30 times a day prior to disconnection (that was every 15 to 20 minutes.....)It was ... [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
abdominal and now pelvic pain
B beckysmom
beckysmom I think you are in good hands and sounds like a good plan. When I took my daughter years ago to Shen he said he dilates a patient of his stricture every 3 months. Hope it is just a process of healing with my daughter and she will continue to improve. Hope 2014 is good for everyone on the site! [ more ]
13 Years & Counting That's good news that all looks fine! Of course doesn't answer why or what caused the pain which I imagine is frustrating. I feel pretty good, but then again, I've not felt sick except for the obstructions. The pain in my hip & lower back at times is awful, but I don't allow it to hold me back. Decided to stay w/ Drs. Chessin & Legnani...didn't seek any other opinions. Scheduled for dilation 1/13 at Mt. Sinai. Hopefully they're correct & the stricture can be opened. Thank you for... [ more ]
beckysmom How thoughtful! Thank you. Yes, she had a scope with her surgeon and he said all looks really good! We didn't speak with him, just the resident, since her surgeon went right into a big surgery. She has an email into him with a few questions, why still pain etc. But so far it's good news! How have you been? [ more ]
See all 19 replies...
J-Pouch ForumsGeneral Discussion
any harm in taking a course of flagyl?
S Salmak
sudie Vanessey, what strength were you taking of the flagal over the two mouth period I ask this as my surgeon has suggested I take low dosage long term not sure yet what he considers low have appointment in late January so will bring up a few thoughts I am going at least 20 times in 24 hour period so over it all am trying low carb as has been suggested on this site but early days [ more ]
vanessavy Flagly's risk is neuropathy but that is if you use it for awhile. Rotating it and using it for short periods reduces the risk. I used it for 2 months straight and now can't use it anymore due to this. [ more ]
Scott F For me the bulking agents enable me to ignore a sensation of fullness much longer. This enables me to choose a reduced frequency at my own discretion. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
illicit drugs
J Jimmy941
skn69 Jimmy, Thanks for asking the question instead of just going ahead and doing it...it shows that you are more mature than most. I agree with everything that the others say but I will just add that no matter what you do, and if you are asking, you will probably be doing it...please keep hydrated, drink tons of water, juice if you can and whatever you do, Do Not Mix Drugs. Or Drugs and Alcohol. BAD. VERY BAD. You can end up extremely dehydrated, vomitting, and in a bad situation. Also, make sure... [ more ]
vanessavy My surgeon told me to smoke weed. I didn't live in a MJJ state but had a secret stash sent to me from a guy in Cali. So I tried this amazing caramel lollipop and let me tell you. It messed me up. My guts were great and I had NO PAIN but my mental state was really off. I would think cocaine wouldn't do anything different. All intestines, I am not street drug/doctor expert though. Cocaine talk is nothing to me, I am from Miami lol [ more ]
Luton Matt Another thing to consider is the number of people murdered by the cartels who ship these drugs. Any money you give to a dealer is indirectly supporting murdering violent crime families who make thousands of people's lives a misery, let alone the physical harm it can do to any individual user. [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Seeking advice, not sure what to do.
G Gibs
ljk I just wanted others opinions on the situation, thats all. Sometimes I feel as if we (jpouchers) sometimes know more than the M.D., Because we are the ones living with it and going through different experiences with it as well. Yes the M.D. have the knowledge of what to advice, but until you actually walk in someones shoes that has a Jpouch, then you really have no idea how that person is feeling. I know for me if someone were to ask something that I have personally dealt with and someone... [ more ]
ljk ok will do, thank you and God bless! LJK [ more ]
Scott F ljk, you're writing as though you might need an emergency department instead of a support forum. We're all kind of far away from you, so other than sharing our experiences there are only very limited ways we can help. Good luck, and I suggest you get medical attention if you are in such severe distress. [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
Prostate biopsy
MN Mark N
JeffDC When I had a physical several years ago, the doc was causing so much pain when he tried to check my prostate that he stopped the procedure and told me to go to my GI. [ more ]
ElmerFudd Mark, this question has come up in the past and there shouldn't be any problem doing a biopsy that way. But I would check with your surgeon if you have concerns. Steve [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
hospital stay for obstructions
clz81clz81
beckysmom How are you feeling? [ more ]
Mhg26 I agree with the last few comments. Just be careful what you do eat. Soup is always a good choice to start for small dinners, and I find things like oatmeal or cereal with milk to be innocuous enough for breakfast or brunch. Bananas are good for your potassium levels and quick energy. A lot of times I'll drink ensure nutrition shakes since it's very light and has all the necessary vitamins, minerals, sugars, fats, etc. Once you're feeling confident enough to take on some veggies, I would try... [ more ]
13 Years & Counting I agree in terms of taking it slow with food early on...I didn't mean to imply otherwise. I just think that you can't be afraid to introduce "real" food slowly. [ more ]
See all 25 replies...
J-Pouch ForumsGeneral Discussion
Day 6, we are home
C CathyA
CathyA Actually her surgery was one step mike, so she already has the pouch. Glad to hear your life is so good with it, thats awesome! Thanks Sharon for your advice, I'll certainly make sure to heed it. Thank you everyone for your well wishes, I will post often, hoping to help others! Cathy. God is Good [ more ]
skn69 Such wonderful news! Don't forget to take things slowly...I know that she wants to do everything, eat everything, go everywhere...but a bit of caution is needed...don't let her tilt the balance from not doing much to doing too much...she needs to heal just like us old folks do (fine, she will probably heal faster and heal quickly but temperance and patience is til the key)...wonderful to have her back in the house, isn't it? Sharon [ more ]
Mike H Good to hear. Slow and easy, you will not believe how fast she will start feeling better. I was back to work in 8 weeks after my J Pouch was created. I am now 3 months after my reversal and life is great. I dont even think about it anymore and I am on no meds at all. The J poch is awesome and works well. As young as she is she will heal quick. Just remember that until that reversal surgery she will have jst as many bad days as good days and alot of it will be the mental part of dealing with... [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Total Proctocolectomy or Not?
U UCinCharleston
TE Marie You mention doctors so I'm assuming you have had more than one opinion. Believe me your colon is not worth keeping with high cancer risk. I had my colon years before being finally diagnosed. When my final flare from hell wouldn't go away and I had UC and diverticulitis pan colon it had to go. I decided against trying biologics because of the risks, my age and colon cancer risk. Most of the people posting on this site are having problems. 95% of those with j-pouches are doing fine and aren't... [ more ]
Mike H With my expereince the J Pouch is a no brainer. I do understand that some people have no option but to have the bag for life but I had one for 9 months until my reversal surgery and it was the worse thing. The words "you get used to it" are just something to make you feel better about it. Sure you learn to deal with it but not get used to it. I have totally forgot about my J Pouch unless someone asks me about it or the topic comes up. Trust me if I am ever told I will have to go back to the... [ more ]
chiromancer An alternative might be frequent colonoscopy. Its not fool proof but something to consider if there was no other indication of cancer. If you have pan colitis your chances of cancer increase dramatically after about 20 years. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
12 years of misery with a pouch
B BustedBadgerButt
Mike H The Cleveland Clinic has Dr. Shen who is considered a genious world wide when it comes to finding out what is wrong with bad pouches. I had my J pouch surgeries there this year and mine so far is awesome knock on wood. Not one day of accidents, night time leakage or butt burn, I highly recomend the Cleveland Clinic. [ more ]
Lesandiego I live in San Diego and used Dr. Mathew Isho. Maybe he can give you a phone consultation. I don't know if he is "great" since I have nothing to compare him to. For the most part my pouch is tolerable and any issues I may have are mostly self-induced because I refuse to restrict my diet. I am able to do all activities and foods in moderation..... so YES I have the quality of life that makes me happy. [ more ]
jeannie Who did your Jpouch. I had mine done at El Camino Hospital in 91 but it failed 15 years later and I had to gp to Scriplps La Jolla for a Kock pouch by Dr Launer. He passed away and now Dr Worsey is taking his patients. I never had any luck with Stanford MD's Completely uncaring *******s. Sorry but you do not have to go so far as the Cleveland Clinic when you can get help in San Diego, CA. Jeanne Scott, Rn Jpouch to a kock pouch [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Please Check your Private Message Notification Status
Jan DollarJan Dollar
Rebe0505 hi sorry donot understand your instructions as it does not work for me..does this mean old system not working as before?use to just click send personal message to person and it did [ more ]
ljk Hi Jan how are you? OK this is the 3rd time trying to write to you!! dont know why but as soon as I amalmost finished it just disapears on me, urrr very frustrating. I wanted to inform you that I am doing quite well now, although I had about 2weeks ago an abstruction, omg so much pain I called the clinic and said they would rather see me but I told them that I was in way to much pain to drive to Cleveland. In akron they did a catscan and inserted a NG tube which I think is the most barbaric... [ more ]
kblgal Thanks! I didn't even know we could receive private messages. >_< [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
May need urgent colectomy in Winston Salem NC, need advice
LH Liz' husband
Sarah.Rae I have had experience with wake forest medical team and they are amazing. My doctor was Dr. Turner, he should still be there if not just find out who took over his position but they work with you. I had my colon removed, temp ileostomy and now have a j-pouch and he is the one who did them all, caring and understanding. I would recommend him anytime. -Sarah Rae [ more ]
BecMom My daughter had surgery at Duke too and I would recommend going there. They did her father's surgery in 1983 and so were one of the pioneers in the field. [ more ]
Troy I don't have any experience with wake forest, however, when i lived in Danville Va, I was referred to Duke University Hospital. I live in Richmond Va now and have a J pouch with problems. My GI in Richmond referred me to them as well. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Day 4
C CathyA
mgmt10 Sounds like she's doing well. This will all be behind her soon. [ more ]
CathyA Thanks so much, I'm very proud of her. She's had uc since she was 8, so it's been a long 10 years. We are Thanking God for every step forward she makes. Hope your doing well. Cathy. God is good [ more ]
skn69 Wonderful news! Now it should all be smooth sailing...She just needs time, activity and nutrition to build up her strength...she is quite the trooper. Good luck and hopes for a fast and uneventful recovery. Sharon [ more ]
See all 4 replies...
J-Pouch ForumsOstomy & Skin
Back to Ileostomy after 30 years
S Solomin
DaDDie2 Hey there Solomin, I'm no expert here but I'm experiencing the same discharge and my doc said it's completely normal. The consistency and frequency are determined by your diet. [ more ]
Selma I wish you the very best in the reconstruction of you j-pouch. I had one for three years and was absolutely miserable and during that time I lost weight, couldn't eat most foods, etc. I have had my permanent ileostomy for 3 years and feel it has given me my life back. I manage it well and thankful for it. [ more ]
Goody2shoes I think that is quite normal - I pass that all the time - have j pouch construction and temporary ileo - not connected up yet after 10 months. Good Luck with your forthcoming surgery (I hate my temp ileo and can't wait to get reconnected !!) [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Any Options Left Crohn's???
Chris MChris M
Chris M yes, it is wonderful news for sure… and maybe she will be time will tell….. [ more ]
TE Marie That is fantastic news! So maybe she's going to be your new GI [ more ]
Chris M yes I was lucky that she tested for sure. So far I am feeling better. I am starting to get my energy back, and haven't had a fever, chills, or shivers since the middle of last week. Looks like things are starting to come around... [ more ]
See all 31 replies...
J-Pouch ForumsGeneral Discussion
Imodium/Citrucel: How much & when
J JsWife
JsWife For all we have been through this year... this site and all of you are what we are so thankful for. Thanks again and we wish you a Merry Christmas and Happy (uneventful) New Year! [ more ]
TE Marie It is best to change one thing at a time to see how your body/pouch reacts but I was put on both right away, my surgeon wrote out a schedule so that's all I know. [ more ]
Minn Mark Everyone is different. When I had my takedown, no one (not surgerons nor GI docs) instructed me to take fiber (Citrucel, Metamucil) etc. I took Immodium (still do). I also control the fluid intake- avoid adding sugar/sweet/salts to your fluids as this will only make you go more. Just my experience, but I would cut out the fiber for several days, and use only pure water- no sodas, Gatorade, coffee, etc and see how you do. Patience is the virtue- its takes a lONG time for things to settle... [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
Anti-depressants? Do they help IBD
M MrsBrightside
TE Marie I hope you get some help MrsBrightside. Your name makes me [ more ]
MrsBrightside Yes the medication may be called something else but they would be available. I think my GP would also be more likely to prescribe but I think my consultant could have a say in this if he agreed with me. Am still waiting to see the gastro consultant, its not the quickest process in the uk. I am going to my GP next week however, and will ask to see a different to see their response to the anti-depressant question. And you're right, they would be very depressed if they suffered what we did, I... [ more ]
TE Marie I forget you aren't in the U.S. I don't know how the doctors prescribe in Glasgow - I don't even think the names of the medications are the same there. I guess you ask your doctor who you should see if she isn't the right one to prescribe you medication for your depression and stress. I wonder how depressed these doctor's would be if it were them with the IBDs, j-pouches, chronic pain etc. They would be stressed and depressed to. I couldn't be a doctor. Talk about stress. Whatever job I ever... [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
More Pouchitis advise
AllyKatAllyKat
AllyKat YEs, it comes in flavored. I just buy the plain organic whole milk. To make homemade, I ordered the grains from the KefirLady.com It cones with instructions. The first batch takes a few days. You have to keep adding milk and just let it sit. It should be ready in 2 days and then 2 more days in fridge. Very easy. It had a good smell today, I have not tasted it yet but my cats were devouring the discarded milk before I added the last 4 cups so I'm hopeful it will be as good as the stores? The... [ more ]
MJFMJF so you buy Lifeway kifir, will definitely try it, does it come in flavors and what do you buy exactly. Also, could you share your recipe for homemade kifer, would like to give that a try also Thanks for your advice. Mary [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
advice pouchitis
M MJFMJF
AllyKat I too just came off antibiotics and also Endocort. I had such bad Big D for 4 days. It was literally coming out of me. I had also ran out of antibiotics and was waiting for my online pharmacy to deliver. So, I literally loaded myself up with every probiotic I had in the house and doubled and tripled the dose, plus I added kefir. In a day I was in good shape and been getting better every day. My surgeon told me today to rotate probiotics every 3 weeks. [ more ]
Spooky Are you taking probiotics? Sometimes there is an "adjustment period" when you take antibiotics, because they essentially kill everything in the gut, even the good stuff. It can take a few days to a few weeks for the gut to normalize after taking antibiotics. It's actually one of the reasons I hate taking them, because they do screw up my system for a few weeks. Basically, though, I wouldn't jump right back on the cipro just yet. I'd actually try starting probiotics to see if you can get some... [ more ]
See all 2 replies...

Join Us!

Founder, Creative Director & Web Master

William J. Johnson
bjohnson@j-pouch.org

Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

Forum moderator and advisor
Jan Dollar R.N.

 

 

 

 

General Disclaimer

 

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


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

Confidentiality

Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.

 

CCFA

The Crohn's & Colitis Foundation of America,
Philadelphia, Delaware Valley chapter, is located at
521 Bustleton Pike, Feasterville, PA, 19053.
Tel: 215-396-9100


National CCFA headquarters are at,
396 Park Avenue South, 17th floor
New York, New York 10016-8804
Tel: 212-685-3440    800-343-3637

 

Join Now

Already a member? Sign In

Online Now

  • Scott F
  • Len78
Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×