Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsGeneral Discussion
Can't gain weight after procedure, need advice
S ShelbyC
phonix2g I had my takedown in March and it took me all the way up to last month to start gaining weight back. I was 140lbs at 6'1" and now 163lbs. I'm not sure if you are into sweets but I buy little Debbie snacks and eat them all throughout the day. Swiss Rolls, Oatmeal Cream Pies, Cloud Cakes (basically Twinkies), and Cosmic Brownie. I've noticed eating high calorie fatning stuff like that throughout the day helps. It also takes a while for your system to start absorbing all this stuff especially... [ more ]
boy's mom My 13 year old son had a takedown in April and also cannot gain enough weight. He is on TPN for 5 weeks now ( overnight nutrition through a PICC line.) so I also will be interested in the answers here. We were adding peanut butter to shakes, oatbran hot cereal and with bananas to add in extra calories. The oat bran was to take the place of something like metamucil which he thought was disgusting to drink to bulk up the stools. He was told the ensure would go thru him pretty fast. [ more ]
Spooky Shelby, hello! I had the same problem as you. Gaining weight after my colectomy was a real struggle. I'm 5'3 and at my lowest I was 86 pounds. I should mention that after my colectomy, I had an ileostomy for 2.5 years. The hospital put me on a weight gain regime; they wanted me to be at least 100 lbs before even considering a return to work. Weight can be harder to gain especially if you were sick a long time. With me, I was completely NPO and on TPN 3 weeks; I had nothing even remotely... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Align or Culturelle?
SpookySpooky
Spooky Yes, I could cross to Detroit through Sarnia or Windsor which are always much, much quicker. Unfortunately the drive is significantly further (4-5 hours). The Buffalo/Niagara/Fort Erie crossings are the closest but unfortunately have the longest wait times. The Peace Bridge sometimes is 3 hours! One of the reasons I don't go to the States as often as I'd like to, even if their probiotics are cheaper. [ more ]
CTBarrister Spooky, You may want to try different border crossings. I recently crossed the Canadian border at Highgate Springs, Vermont at 11:00 am on the 4th of July, a US national holiday, and had only a 15 minute wait to get into Canada. Coming back into the USA on Monday July 8 via I-87 to New York the wait was under 10 minutes. The guards on both sides of the border were pretty cool. Unfortunately I have no plans to travel to Toronto in the near future, otherwise I would bring you the probiotic... [ more ]
Spooky It's probably free shipping over $45 for orders within the US, not internationally; that is if they even ship some products to Canada. Certain products can't be imported or shipped internationally. I've also been dinged on shipping and customs charges in the past which actually exceeded the value of the product I was having shipping, so I'm wary. It's about a 2 hour drive to Buffalo from here but the big issue is the lengthy border crossing and based on past experiences, it's not worth the... [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
how long before suppositories/enemas work?
BM boy's mom
boy's mom Thank you. Would it make sense to take the oral meds AND the rectal suppositories for more of a chance to work? [ more ]
Jan Dollar Ideally, you want to retain the Canasa for 3 hours, or a minimum of 1 hour. Make sure to administer after emptying the pouch. Usually, dosing is once a day at bedtime, but twice a day is not unusual for severe or stubborn cases. Once things begin to calm down, he should be able to retain them longer. If he can't retain them at all, ask about oral meds, like Pentasa or Azulfidine. Jan [ more ]
boy's mom Thanks - (I made a mistake when I wrote "enema". Does anyone take canasa 2x a day? How long do you make sure it is in before you go to the bathroom? Thank you! [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
First time w Pouchitis.. Have ?'s
RM Randi M
TE Marie Jan, can you get too much bacteria from probiotic bacteria? I know it's good bacteria but I was of the opinion that there was never too much good bacteria. Then I remember back to when we had tropical fish that were sick. My mother was giving them their medication and thought if this will make them better then more will cure them faster - they all died. [ more ]
Jan Dollar In addition to the above, yeah, taking antibiotics even without pouchitis can improve your function and make you feel better. There are two reasons for this. One is that they usually reduce the stool output/volume (because much of our output is bacteria). The other is that you can have bacterial overgrowth without having pouchitis. If you are due for an exam anyway, I'd suggest scheduling a scope before requesting more antibiotics to see what, if anything, is going on. Jan [ more ]
suebear I've only had pouchitis once and took Cipro for it. After I finished the Cipro Rx I didn't feel well; although I didn't feel pouchitis-y either. In my case I had a Cipro hangover which my surgeon said was normal. Give yourself a few days and if you're pouchitis symptoms don't regress, you too could just be suffering with a Cipro hangover. Sue [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
J-pouch & incontinence
S saharagold
ljk Is this why they advertise the leakage product at the top of the screen, it must be common? like I said I will do anything and everything to avoid this, so any advice would be great?? [ more ]
ljk Wow reading about this incontinence really does scare me. What if you plan ahead your meals , like having a schedule everytime you eat. lkie at 8:00 am breakfast snack at 10 o lunch at 12:00 Snack at 3:00 dinner at 5 o then last snack at 8:00, then of course drink as much as you can through out the day, would this help to prevent this? I know most of us work and may have to adjust to a schedule that is right for them! I know having my illeostomy I never had this problem, when I had time to... [ more ]
Scott F There's a little prep for pouchoscopy, and a fair bit of variation, but it's nothing like a colon prep unless prescribed by a sadist. [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
Exercising Post-Takedown
kblgalkblgal
kblgal Hmm... I'm pretty small (4'10", 120 lbs). Maybe 3 lb weights, very slow? I do want to build my strength back up! Just nervous, but doing a lot better after the 2nd surgery! [ more ]
Scott F It may be worthwhile to take a flexible view of what constitutes weight training. Lighter weights (even substantially lighter weights) lower the risk considerably, and can be quite effective with different approaches (e.g. many reps, super-slow technique, etc.). [ more ]
kblgal Just wanted to say I jogged both yesterday and today with no problems! I'm probably going to avoid weight training for awhile. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
private message
D dawn58
Jan Dollar Yes, CT. The last PM notification I got was June 26. Not sure if there is a correlation, but that was also the date that our resident troublemaker last registered (with three different screen name registrations). This site has been hacked before. I will send an email to Bill J to alert him to the issue. It is out of my level. Jan [ more ]
CTBarrister Mine was also shut off, and thank you to the thread starter for starting this thread and alerting me to the problem. There were PMs sitting in my mailbox since June 30 which were not responded to because I was not notified of them. The problem happened some time between June 23 and June 30, based on June 23 being the last PM of which I had email notice. Someone then shut off my PM box's automatic notification by email without my permission. Anyway, I am now once again on automatic... [ more ]
Jan Dollar Liz, You are right! I noticed that my PM notifications were off also. Must have been part of some update or something. I guess I didn't notice because I come her often enough to see the PM alert at the top of the forums. Jan [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Can stool color indicate ileus?
DebraDebra
Jan Dollar Oh sure! The more "raw" the bile is, the less digested the bile acids are, so certainly more butt burn is on the menu! Jan [ more ]
Debra All I know is whenever this color shows up, butt burn is not far behind. (Double-pun? Ouch!) [ more ]
Jan Dollar It is one of those "it depends" things. Stool color basically changes based on how long it has been in your system. It starts out green (bile), then as digestion progresses, it goes through color changes of orange to brown. The closer to green it is, the quicker it is moving through. Different things can precipitate quicker transit. It could be diet related, infection, and yes, partial obstruction. With obstruction, the peristalsis speeds up, in order to try to move the obstruction through. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Offensive Private Messages
Jan DollarJan Dollar
Jan Dollar Thank you! If you want to send a PM (private message), just click on the screen name and choose "invite to a private topic" from the drop down list. Jan [ more ]
ljk Jan, Was not sure how to privately message you but I just wanted to Thank you for all your advice and to let you know how truly greatful I am to have met you!! LJK [ more ]
Jan Dollar Yes, remove your email. You can aleays exchange email addresses through Pivate maessaging. You don't want to have to change your email address because of horrible emIls. Jan [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
dilated cardiomyopathy
B Bodoni
Jan Dollar Sorry you're having to deal with this. I don't have cardiomyopathy, but had my share of cardiac issues a few years ago. It can be unsettling, to be sure, and I know that cardiomyopathy is not something that just goes away. But, it is treatable and I hope you tolerate the medications. I take a beta blocker for tachycardia and have no issues with it. Presumably you are being followed by a cardiologist. Good luck! Jan [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Failed J-Pouches
F Future_Jpouch_Patient
liz11 ep, Dr. Shen, the infamous GI doctor at Cleveland Clinic, has had much success with needle/knife and doxyclycline injections for sinuses. He has been doing this for several years now. This link refers to a paper that is over a year old, might I suggest you share it with both your GI doctor and surgeon. http://www.ncbi.nlm.nih.gov/pubmed/22390150 [ more ]
EP I am just recovering from surgery for loop ileo needed due to pouch sinus caused by chronic pouchitis. Is there any treatment for healing the sinus? Is there any hope of healing and reversal? Thank you. [ more ]
Jan Dollar In the case of end ileostomy, the j-pouch is removed and discarded. Sometimes, they can reuse the j-pouch to make a Kock pouch, but not if it is riddled with disease. This is mostly in the cases where there are functional issues, like poor sphincter function. Jan [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Heartburn ugh
M mads101
rachelraven Some people have stated that burning can be related to bacterial overgrowth. There are diet changes to make, if that's the case. I'm sure someone who has it could chime in, I'm not affected by that. You avoid carbs and sugars on the diets they prescribe. Could also be GERD (gastroesophageal reflux disease), which is more common. You'd take an H2 blocker or Proton Pump Inhibitor if this was deemed the issue. Like the person above, you'd go on Zantac or Pepcid, or Prevacid or Prilosec. You... [ more ]
Bodoni I used to have bad heartburn. My doc prescribed Zantac prescription strength. Worked fine for me. (OTC was too weak.) A little bit of Pepto Bismol won't hurt 'til you talk with your doc. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Three Step Surgery at Cleveland Clinic?
P Pkitty
Mike H I am having the 3 step at the Clinic as well. My surgeon also said that is what he prefers. I am in between step two and three and just waiting on the takedown. I have spoken to a number of people that had the 2 step that were in the hospital for many days. After my first surery I was released in 3 days, after the second surgery I was released in 3 days and the surgeon said the same should happen after the takedown. Many of the 2 steppers that I have spoken to were in the hospital for up to... [ more ]
dawn58 I guess I count surgery time as the actual surgery. Also, I never let them give me anesthesia or even any type of IV until I am in the operating room. There's no way I sit with an IV waiting to be taken in. If there is a delay of any kind and usually there is, a patient could be sitting with an IV for hours. And, as far as being in the recovery room, my parents are always there. Unfortunately, I have way too much experience. Rachel, since you were already in the hospital once you must have... [ more ]
rachelraven I was hospitalized for 2.5 weeks prior to surgery. I was already there, as an inpatient. That was likely why I had such an early start time. MY 5am start wasn't surgery starting RIGHT AT THAT TIME, but my preop meds, my labs, and trip to preop holding was between 5-6am. Anesthesia started with me around 6:30am, and surgery started around 7am. I spent about 3 hours in postop recovery before being wheeled to my room very late in the day. I work in a teaching hospital, too, and yes, preop... [ more ]
See all 27 replies...
J-Pouch ForumsGeneral Discussion
Anal Canal, Anal Verge, Cuffitis
P Pkitty
rachelraven Mine was clear cut UC when I had it, and I developed a perianal fistula recently. My surgeon still doesn't think I have Crohns, though, as I have NO other symptoms of it, at all. He thinks the irritation I developed from straining with my first real bout of pouchitis likely was the culprit of my fistula, though it is hard to prove. These issues can strike UC patients, though, and bowel surgery like ours also increases the risk. UC article: http://onlinelibrary.wiley.com...d2e2bd567974453e3c5e [ more ]
vstRN Sorry, not much help here. Need to correct myself and say I always had severe disease in the rectum and never had any perianal disease - always very clear cut UC and not crohns. Good luck with your decision! [ more ]
Pkitty vstRN - are you saying that you are not surprised you ended up with cuffitis later because your inflammation included the anus? And if it is typical UC for people to have inflammation include the anus, why don't they get cuffitis since the anus is left in tact after the surgery? That's what I am wondering about. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Anal Skin Tags
P Pkitty
Pluot I allegedly have one... a fellow scoped me once and noted it in the procedure report. My GI (the fellow's supervisor) and my surgeon have both examined me many times and never noticed it themselves. So- can anal skin tags disappear on their own? IDK. I don't worry about it. [ more ]
joshpr I have one and it was never an issue. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
weight gain
L lab
cassiecass Nice Nurse well said You are so correct on the lack of education into nutrition for Mds. I wonder how many of us have had their vitamin levels checked? I have not but will shortly. As a thyroid patient who has gained weight with an ok Tsh. I know many or most Mds know so little about thyroid disease.This is a known fact and better yet they also do not know or understand menopause.So I wonder what they truly know about J pouch.We must remember today medicine is practiced in body parts.You... [ more ]
Nice Nurse It is not simply a matter of calories in, calories out. Not for j-pouchers and not for women nearing menopause or post-menopause. Having a leaky gut, celiac, colitis, or any other irritable bowel problems, for years can cause weight gain OR loss due to inflammation. The leaky/damaged gut leaks undigested proteins into the bloodstream where it binds to tissue causing long term problems that are not easily remedied. Also, most people with these problems are severly malnourished due to the body... [ more ]
skn69 There is intake-output (what you eat as opposed to what you burn) that is the base for your caloric intake...if you are sedentary you need less, active if you need more...but you then need to figue in your muscle mass (muscle burns more calories than fat), your body's fixed set thermostat called metabolism (how fast or slowly it burns calories), your age (the younger you are the faster you seem to burn calories), your body's plateau weight (your body gets accustomed to a certain weight and... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Successful Jpouchers
P Pkitty
Nice Nurse I totally agree with all the posters, especially with the one who said family support is a key. Most people turn to support forms to rant/complain. It's rare to hear the good stories. That said, it's also a matter of expectation. I was so sick with UC, my choices were all but taken away from me in 1995 when I had my j-pouch. I had it done in one step. The recovery was tough. I was a young mother with 3 small children. Fast forward nearly two decades, and I am doing ok. Perfect, no way. But I... [ more ]
hfc I was 45 when I had my colectomy/j-pouch in 2004. I am now 54. I am a cardiac electrophysiologist who probably ignores a lot of things to do with my body (time to see a dentist, can't remember the las time I went!). I had sigmoid UC, was getting to the point of despair because of multiple and unpredictable BMs/blood showers and very painful cramping without warning from my gut. I tried a lot of things. The final go round was cylosporine which did nothing. One of our NPs developed UC; she... [ more ]
Mike H Go to www.ihaveuc.com There are many successful J pouchers on this site. I actually like it better. It has a load of success stories and each story is different. The website actually got me ready for my sugery more than I realized. Go to the surgery tab and start reading. i have even added a couple stories myself about my two surgeries. Mike H [ more ]
See all 20 replies...
J-Pouch ForumsGeneral Discussion
No Good Routines
T TeresaAnn
TeresaAnn I tried the fiber and it is helping. I also contacted the doctor but I am having no pain. [ more ]
Scott F I agree that contacting the doctor is the next best step. I would usually expect pain to be a prominent feature of an obstruction (more than constipation), but it wasn't mentioned. On reflection, adding bulk (fiber) could be a bad idea without an explanation of what's causing the symptoms. [ more ]
Jan Dollar 2-3 days without any movement is not normal by any stretch. It sounds like you have a chronic partial obstruction, could be a kink from adhesions, or maybe an anal stricture. But, constipation followed by loose, frequent stools often means that there is an obstruction and when the pressure gets high enough, loose stool comes around it. You need to tell your doctor about these symptoms, and if you are taking any bowel slowers/fiber supplements, you should stop them until this is sorted out. Jan [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Risk factors for pouch inflammation/complications
K killcolitis
Pluot So, when you're logged into 23andme you can use this link to view your genotype for the SNP: https://www.23andme.com/you/ex.../?snp_name=rs2066847 This is the same as the third Crohn's risk SNP shown on the Crohn's page under Health Results. For what it's worth, I totally don't understand this but it seems like I *don't* have the mutation but my (Crohn's ileitis-having) mother does. I also have a brother who has the same mutation and doesn't have IBD at all. A couple of the other SNPs... [ more ]
killcolitis Okay, I was wrong Liz, it won't necessarily be flagged by 23andme. I'd assumed it was one of the three main nod2 variants which do get flagged, but I guess it's one with a CD association but a lesser one. Here's the snpedia link - it lists the risk alleles for CD which I'm assuming is what they're using in the study? Not sure. http://snpedia.com/index.php/Rs2066847 [ more ]
killcolitis They do, Liz. You need to type the SNP (rs) number into their general data. If you had it though, it would have come up as a risk for CD and would have been flagged (I know b/c that's how I found out my daughter had one of the three). My daughter's case is complicated by the fact that she's half Indian (me, and these common variants don't exist in the Indian population at ALL) but my brother has UC and half Italian (and they are common there but no IBD other than a first cousin with UC on... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Muscle Relaxers
P phonix2g
PDXDavid I take diazapam for rectal spasms. Haven't had a problem with leakage. [ more ]
Jan Dollar I take muscle relaxers, Flexeril, and now Robaxin. Never had any gut issues with them. But, it was a good 10-12 years post op before I started needing them. I don't take stronger stuff like Valium, Soma, or baclofen, that are more for acute problems or spasticity. Jan [ more ]
phonix2g No I don't take them for my bowels I take them for other parts of my body. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Does anyone know
Mema 1Mema 1
Mema 1 Thanks, Jan, you're amazing and always there. What would we do without this site and YOU!! [ more ]
Jan Dollar The color of the box doesn't matter. They are just different quantity counts. Otherwise, the same. As to which one to try, I don't think it matters much. I probably would try Align first only because it is cheaper. Jan [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Sudden Night Leaks
M mom2panda
phonix2g I have had it had happen numerous times because I wanted to prove my theory was correct. I always have a craving for chocolate at night and any time I end up eating it and then going to bed I woke up with a mess in my underwear. Check to see if it is something you are eating instead of automatically assuming you have a serious problem. [ more ]
CTBarrister If it is being caused by spasmodic bowel, then Donnatal, Levsin or Bentyl or any other anti-spasmodic taken at bedtime will control it. I had these issues after takedown. If I have nighttime leaks now, it is a sign of pouchitis, I rotate the antibiotics I am taking, and then it stops. It could be a number of things, including a stricture. You can eliminate the 1st two possible causes as suggested. [ more ]
Lesandiego You are a heavy sleeper and/or you are really tired and nothing will wake you up. LOL That is what happens to me sometimes. I take lomitol just before bedtime and generally do not eat anything after dinner and my night time leaks have diminished greatly. Dairy foods cause me to have diarrhea, so I really should minimize eating these foods at night. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
need help
magic30magic30
rachelraven Good luck. When I couldn't get anything out, it was AWFUL, and it was an outlet narrowing. Was down to the size of his pinky finger, so had dilations under anesthesia. Been good so far, fingers crossed. [ more ]
magic30 Made it to my appointment day no ER visit. Going sparingly but going. Bloated and funny feeling but not entirely blocked if theres a block at all. Who knows maybe its something else. Hope they can tell me today. [ more ]
magic30 Thanks. So much. Beyond words. Thanks for advice [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Getting used to new pouch
A amberbam
TE Marie If you don't have a bidet I'd suggest getting a bidet sprayer. I have one and wish I'd had it from day one. I ordered mine from Diabeties.com for less than $50 and my husband installed it in 10 minutes. It is basically an old time kitchen sprayer attached to the water supply to your toilet. Each BM I spray myself clean then dab dry with ultra soft or ultra strong charmin. Calmoseptine is #1 with me too. You can order cheaper 3 at a time on Amazon, but you only save about $1 each tube. Also... [ more ]
phonix2g That was supposed to say pouchitis not pouch it is. Stupid autocorrect [ more ]
phonix2g How you are feeling is perfectly normal for how early it is in your recovery . I went through the same thing around the same time after my takedown. No need to get paranoid it will get easier as time goes on. I had my takedown March 23rd and now it is a world of difference. You most likely will see your bathroom trips lessen as time goes by and the pressure subside. I still get that uncomfortable pressure sometimes but its mostly now when I have gas. Are you able to pass gas or are you a... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
"Green" shake recommendations?
A Anushka
TE Marie P.S. I mix my probiotics in after I pour the smoothie from the vitamix. FYI you can buy them used and buy new parts on Amazon. The parts are indestructible but I managed to break one, lol. My husband makes homemade peanut butter in the vitamix too. [ more ]
TE Marie It was for nutrition, not for weight loss or gain. It also has good nutrients for cell growth. I was over weight but loosing it too fast and not getting the right nutrients after my surgeries. My Internist thought I was loosing weight too fast. It's also good for healing. I don't think it gives me gas but you could make it and set it in the refrigerator for a while I suppose. I'd leave out the veggies in the beginning. I have a Vitamix that pulverizes the ingrediants like a super blender. [ more ]
Anushka Thanks everyone for your replies. vstRN, I have been miserable too! I had no clue it would be so hard! I have felt incredibly underprepared. But I am thankful for the small improvements, most recently the gradual subsiding of what was agonizing anal burn the first week out. Have you been tolerating your smoothies since your takedown? I've been afraid to have any drink that's been shaken or blended for fear of air bubbles giving me gas. The gas causes such horrible discomfort and urgency for... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Weight gain and jpouch
DonaDona
Dona I wonder if there has ever been a study on the success and complications after j pouch surgery in relation to weight fluctuations before and after.Extra weight is just bad. Seems like everything these days is blamed on a person's extra poundage. [ more ]
mad hatter Was into weight training pre UC and was up to 210 lbs at 5.9 ½. Post UC ops I ws down to 165. Now after 4 years I am back up to 200 lbs. Can’t say that having or not having extra weight was an isuue. [ more ]
Dona Thanks Jan. my GI also moved away but ironically his wife contacted my husband's business for home renovations on their home that they need to sell. One convo lead to another and I have been able to get advice by phone from him. I told him I would make an appointment to come into the office (1 1/2 hrs from me) to get an exam and schedule tests. He wonders if it is scar tissue. He prescribed anucort as needed, which seems to help. I was just concerned because I remember a friend asking me... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
So Now I'm Wondering.....
Mema 1Mema 1
Mema 1 Well that's a surprise - white sugar is fine?? What about carbs, like anything white, bread, bagels, spaghetti, etc. - since they change to sugar after eating, do those things have to be cut out as well, and if so, I'm curious, what does everyone eat? I can't eat very much fruit so that doesn't leave me with very much food other then all proteins? Another question, what about Slenda and Sweet and Low - I would imagine that they would be okay to put into things. [ more ]
liz11 all sugar is not the same. on FODMAP diet - honey, molasses, high fructose syrup, fruit juice concentrates, agave are out. but plain white sugar and true maple syrup are fine. I have definitely noticed a difference with SIBO symptoms following these sugar rules. [ more ]
rachelraven At its base, "sugar" is sugar, whether honey, agave, white sugar, brown sugar, etc., so if you're affected by too much sugar and overgrowth, they're all going to affect it. I'm lucky that I'm not bothered by that. [ more ]
See all 16 replies...
J-Pouch ForumsGeneral Discussion
Was keeping quiet the right thing to do?
H HLL
HLL Thanks all, I feel better about keeping quiet now. I was up half the night the other night worrying over whether or not I should have said anything. I couldn't imagine how that conversation possibly could have happened and ended well. It's not the first time I've noticed someone else had an ostomy while out and about but seeing the contents was a bit of an event even for me. [ more ]
Breezie I stick to the "Five Minutes/Tools on Hand" Rule. If the person can fix the problem within five minutes and/or with the tools on hand, tell them. Skirt tucked into their pantyhose -- tell, easy fix. Stain on their shirt? Say nothing. They probably already know and even if they don't, there is nothing they can do about it at the moment anyway. Hem coming down from someone's skirt at the office? Tell, they can fix it with a stapler until they get home. Works for me. [ more ]
Jan Dollar Of course, in this instance, plastic gloves would not have made any difference! Jan [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Stem Cell Grown Colons
F Future_Jpouch_Patient
PDXDavid The new 3D printers are being used in amazing medical applications. I would think they would hold more hope than stem cells. Maybe in combination with stem cells....? [ more ]
marriedguy Ok, so I am very rarely on here any longer, but I was taking a lunch and decided to stop by. Its been about seven years since I had my successful K-Pouch surgery. I remember talking with Dr. Fazio at the time, and he purposely left parts of my anal musculature (I don't remember specifics), with the thought that some time in the future a colon could be created through stem cell or other therapy. I don't know where the development stands, but at least a number of years ago, it was on the minds... [ more ]
dgtracy I'm 24 years old, only 2 months from my takedown...if i was give a high statistic number that i would be more closer to normal than i am now..i would 100% do it, now 6 months to a year down the road, after everything with me has settled even more i might change my tune but i have always wondered the same thing about stem cell engineered colons, scientific america had an article at one point about it. [ more ]
See all 16 replies...
J-Pouch ForumsGeneral Discussion
J pouch HELP
L ljk
dgtracy I had my pouch done in two steps..i found the last one was the hardest...having to get used to this new feeling.."training" the pouch to hold things in...still doing that btw, sleepless night..slept great still with my bag but currently i get up at minimum 4 times a night...still working on mine though. [ more ]
Pluot It sounds to me like the people you've spoken to so far are just not very familiar with j-pouches... happens sometimes... I had a whole conversation with my surgeon's PA once about discharge from my j-pouch (not hooked up) and she asked me if it had a foul smell "aside from the usual poop smell"... umm, there's no poop in my j-pouch! Anyway -- I wouldn't do an enema either, at least not without talking to your doctor. If the mucus isn't coming out and it feels like it needs to, that could be... [ more ]
rachelraven I never needed thickeners or antidiarrheals, even with my loop ileostomy. Metamucil made it too thick, and I prefer a bit more of a liquid stool, if I can get it (something someone in the beginning J pouch stage probably would never guess of someone with a pouch, but I'm continent even with pretty liquid stool; always say, Sphincters of Steel!) You may have luck with Metamucil, though, as many need it and find it helpful in bulking up their stool. You can use it with the ostomy, and after,... [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Who reads the pouchogram?
P Pluot
rachelraven Agreed. All of the surgeons I work with view all films, CTs, MRIs, other tests, etc., but rely on the radiologists expert opinions for a total report. [ more ]
Jan Dollar I believe they both do. The radiologist prepares the report, but most places these days do digital films and the ordering physician can view the actual films quite easily without physical films having to be sent to him. Jan [ more ]
mgmt10 The radiologist read mine and then sent the report to my surgeon. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Probiotics?
L LisaY35
LisaY35 Thanks for the responses. I appreciate the advice. Makes sense! [ more ]
Jan Dollar I agree. Taking probiotics won't hurt anything, but when you are trying to figure out how what you do and/or eat affects your pouch function, you want to take things slow and make one change at a time. But the first thing is to figure out what your basic function is, and early on, it can change on a daily basis, regardless of what you do! Jan [ more ]
phonix2g You might want to wait a little bit to get used to how your pouch operates. The reason I say that is because when you first start taking probiotics they may cause cramping and bloating and other and effects and you may think your pouch is having issues when its not. I would wait to get your diet right and learn your pouch a little before you start them. This will help you also know the difference if they are helping or not. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Amazing Article on the gut biome
ElmerFuddElmerFudd
Jan Dollar Actually, the article did not specify which 14 were tested in the study. The point was that since probiotics are in an unregulated industry, there is no assurance that any particular brand contains what is on the label. The article in this topic indicated that there was less emphasis on probiotic supplements (few of the scientists took them), and more emphasis on prebiotics. Prebiotics are the complex carbohydrates that are only digested by gut bacteria, and are the various types of fiber we... [ more ]
woodstock69 So which probiotic out of 14 should we be taking? [ more ]
Jan Dollar Now they both work! Jan [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
How to best handle long distance surgery?
T tiesto81
Mike H When you leave the CC they will give you a list of phone numbers. I had a small issue and called the number and spoke directly to my surgeon after just a few short minutes. you are choosing the right hospital for this procedure. Mike H [ more ]
Mike H Liz is correct. My first in home nurse knew nothing about ostomy care but after my second surgery I asked the social worker to find my an ostomy nurse and she did. Just make sure that the home health company you choose has a certifiedostomy nurse and the will send one. Mike H [ more ]
liz11 Hospital social workers, including those at CC, generally set you up with a home nurse, not a specifically trained ostomy nurse. I have found home nurses to be completely useless at dealing with any ostomy issues. And all three of the home nursing companies that various hospital social workers have set me up with had ZERO ostomy nurses on staff. With that said... cleveland clinic does have a ostomy nurse hotline number. And if you call and leave a msg, you will generally get a call back the... [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
How often to get pouch scoped?
M mads101
suebear I don't have any chronic pouch problems, pouchitis or cuffitis, so I get scoped every 3-5 years. I did do annual scopes the first 5 years post surgery. Sue [ more ]
CTBarrister The answer I got from my GI doctor is get scoped annually due to the rectal cuff cancer risk, dysplasia or not. Because I had dysplasia, this is a "very firm" recommendation, which he says is also endorsed by his mentor Dr. Bo Shen. [ more ]
Jan Dollar My prep is just tap water enemas before leaving the house (and I also limit my diet to liquids the day before). I don't get sedated (never have, except for a full colonoscopy). I have my scopes every 1-2 years. I have not ever had any dysplasia, but my original diagnosis was pancolitis more than 40 years ago, so my cancer risk is higher. These are good questions to ask your doctor, as the answers vary. There is no one right answer, and it should be tailored to your needs. Jan [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Fluid retention & End Ileostomy
WinniethePoohWinniethePooh
WinniethePooh Fasting labs looked ok.. I do have low Vitamin D levels. I have been having body aches .. lower back and in the legs. Can this be from Vitamin D Deficiency? [ more ]
WinniethePooh Thanks Kathy & Jan Just back from Doc.. He is not concerned. Feels I should monitor sodium intake. Lose weight and exercise more. He pretty much blamed it on the heat. I have awesome blood pressure, he said everything sounded good. He did order fasting labs. So at least it will be good to see how those are. [ more ]
Jan Dollar Having an ileostomy does not protect you from heart disease, so you are smart to follow up if you are having similar symptoms as your parents. Dependent edema (water retention in the feet and legs) is pretty commonly associated with left sided heart failure, but also with anything that can cause heart irritation and many medications. For example, regular use of NSAIDs will cause it. You can wear support stockings, but that just help prevent the swollen ankles. You can take diurectics with a... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Using the bathroom at night again):
M mads101
dgtracy You can sleep a consecutive 5 hours! im still trying to work up to that. Everything i have read on this forum about sudden onset of urgency, sudden change in pouch function points to pouchitis. [ more ]
Scott F The good news is that pouchitis usually responds very quickly to antibiotics. [ more ]
Jan Dollar Sounds like pouchitis to me. You should contact your doctor. Jan [ more ]
See all 3 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

  • Jan Dollar
  • 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.
×