Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsGeneral Discussion
Xifaxan + Florastor, now maybe VSL versus Visbiome?
B BlueFlame
CTBarrister I had my surgery done in 1992 by a different group of surgeons- Dr Irwin Gelernt (died in 1996) and Dr. Steven Gorfine, who at this point might be semi retired. That group is now known as Manhattan Surgical Associates and was known under another name in 1992. Mount Sinai in NYC probably did more J pouches in the 5 years from 1987-1992 than any hospital in the world. They were the only place any GI doc in the northeastern USA would send you at that time. Things have changed and now for... [ more ]
BlueFlame Thanks, Scott. A bit perturbed I’ve been taking Florastor without this understanding.....and really not more than a supposition by the doctor’s office that it likely provides some benefit. I’m fighting a battle here, not looking to waive a feather at it and cross my fingers! Truth is, they just don’t know. And I get that. I just wish we weren’t the ones who are one step ahead because we read and research. [ more ]
BlueFlame Agreed, mostly. A huge problem is there are few answers, partly the nature of the beast. I had my pouch surgery at Mt. Sinai about 30 years ago....Drs. Greenberg and Hyman. Are you familiar with them? [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Stoma skin irritation and take down in two weeks!
J Jpouchinseattle
Roni* Will pray for good news for you. [ more ]
Jpouchinseattle Hello Roni, thank you for the reply. My issue is that the new stoma discharges from inside my skin. So it is like a small bowl. It’s hard to keep a bag on and irritates my skin, so badly that I have to constantly be treating it in order for it to heal. I have to say that it is much better than a few weeks back where there was much more blood and much more pain. It has slowed down, but I am currently working on controlling output and also trying to stay out of dehydration mode. Easier said... [ more ]
Roni* Is your stoma retracting behind the bag by any chance? Because if that's what is causing the leaks I may be able to help you. My stoma was too short to go all the way into the bag. So when it retracted, the stool leaked behind the bag. You can imagine what all that acid does to the adhesive on the bag and your skin! Ouch! I was able to solve the problem somewhat, but still had too much output, so constantly dehydrated and in the hospital for iv fluids. They tested my pouch just after 2... [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
How deep does an NG tube go?
A Andreita
skn69 All I can add is that certain surgeons place the equivalent of an NG tube directly through a hole in the upper abdomen during surgery (for post-op comfort for the patient)...I had mine when they created my k pouch and it was not removed until I was discharged 31 days later. That was the only surgeon that I have ever had who did it that way (although I have heard that Dr R at Palms who does the BCIR does that too)...But that is during pouch creation surgery. For the ileus or blockage it is... [ more ]
Michael Just finished a pleasant five day stay at NY Presbyterian with a combination stricture / small bowel obstruction. Admitted Sunday after J-pouch decided to cease operations for 36 hours. Bilious vomiting Sunday night with an NG tube placed post haste to alleviate the constant gastric back pressure as described above. Successful procedure on Wednesday to dilate the stricture and use a balloon to clear the 'kink' causing the SBO. While placing the NG, and I could well be wrong, but recall the... [ more ]
Andreita Thank you so much for explaining. Yes I've seen my dad do the gasoline thing I thought it was weird and gross but it worked haha [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Take down in a week, what does life after the stoma take down look like?
J Jpouchinseattle
Andreita I was 7 and a half weeks. Close to 8. Pooping mucus from the not yet connected J-pouch happened to me and it's normal. [ more ]
Bobish Discharge is normal, it's actually even a good sign, it means you still have regenerating bacteria in your gut. If you bathe your butt with warm water you it will pour out of you until empty.. useful just before bed etc. When I had my takedown the top advice was to walk, as soon as you could for as much as you could to get the bowel working. It's still good advice [ more ]
girlunky My doc said discharge from anus is normal. Even with little spots of blood. Sometimes I had none, sometimes a couple times a day. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
JPouch and Keto
L LisaRam
Emmyschmemmy Are you still doing Keto? I just started it last week and haven't experienced runny BMs, but the opposite. I find that the amount of cheese I'm eating is making everything too bulky and I'm having to strain on the toilet. I also can't resist eating the roasted salted mixed nuts that my husband buys, but they're terrible for my pouch and now I have a bad hemorrhoid. I've read that it's popular to pair intermittent fasting with Keto. Have you done any research into that? I wonder how a j-pouch... [ more ]
Raj I've been on ketogenic diet for quite some time. And it has been my go to diet while I try to cut and loose body fat. I havent met any dietician post takedown for a new plan. Earlier I would drink lots of milk/yoghurt, hard boiled eggs 2 serves, nut butters (almond/peanut), healthy oils (olive/coconut), meat (all kinds), cheese, butter, cream etc. I dont supplement much except for zinc, and vitamin C and 1-2 multivitam tablets. For potassium I just drink coconut water almost eveyday on keto... [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Swelling after surgery
K Kh1988
girlunky Sounds about like mine. I couldn't wear any of my pants for quite a while. But it does go down eventually. In the meantime, think stretchypants. [ more ]
Kh1988 Thanks so much for your reply. I think your right. I’m sure it’s all normal. Have to keep reminding myself it’s been less than a week since the surgery lol. [ more ]
Scott F This sounds likely to be normal. You just had major surgery, and it will take your body a while to recover. Be gentle with yourself and every day should get a little better. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Envitrio
Linda2Linda2
Linda2 Thanks so much....that gives me hope! [ more ]
CTBarrister I am on Remicade - another biological drug that is infused. It takes a period of months for these drugs to clear up chronic inflammation. It shows up in scopes after 6 months. Don’t expect instant changes. [ more ]
Linda2 Thanks for your reply. We shall see how things go I guess. Not having any pain so that’s a good sign! [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Abdominal/ back pain
Wee sylvWee sylv
Wee sylv Thanks for your reply Scott. I was eventually admitted to hospital on Monday June 17th. Spent 4 nights as inpatient came home last night. My pain has reduced significantly since last weekend, my usual dose of OxyContin is 40mg twice a day (slow release) and additional 10mg immediate release for breakthrough pain. In the short term until the pain is more manageable I’ve been increased to 40mg immediate release every 4 hours. I had an ultrasound and CT scabs which showed nothing significant,... [ more ]
Scott F I’m sorry you’re in such pain, Sylvia. It’s probably not pouch-related, especially if it doesn’t feel like an obstruction, which you are all too familiar with. They’ll just have to start looking for the source, whether it’s ovarian or something else. It could be something like a herniated spinal disc, which can feel like pain in whatever body part the compressed nerves are carrying signals from. There are lots of other possibilities that they’ll have to consider in turn. Good luck! [ more ]
ElizaB ❤️
See all 2 replies...
J-Pouch ForumsGeneral Discussion
If minor leakage now at 48, what will 65 look like ??
PouchomarxPouchomarx
Aimc Hi Patricia, I too have a stricture that was causing incomplete emptying and leakage. I had two balloon dilations under sedation done by my GI doctor. They couldn't get beyond 10 mm with that procedure. I've most recently had a dilation with a Hegar dilators, done by my surgeon. He got to 16 mm, which is a normal range. I also use these dilators at home. This procedure has helped me greatly to get much better function of my pouch. CT is right about the things that could go wrong. Talk with... [ more ]
PATRIZIA Thank you for the important points you made and i will let you and all know as soon as it has happen. I will find out in the meantime if the surgeon has to touch the anal sphincter or not, hope not. [ more ]
CTBarrister I would ask him if any surgery will touch the anal sphincter or not. That particular area is a tough one to surgery. I had a skin tag on my anus and was referred to a colorectal surgeon at Yale and he explained to me surgery wasn’t necessary and was very risky for something that’s really more a cosmetic type of issue than a functional issue. I didn’t know what the skin tag was, but it’s just a benign growth that does not interfere with defecation or cause leakage. I wish you good luck! Let... [ more ]
See all 13 replies...
J-Pouch ForumsHelp! Need advice now!
What is a Seton, for a J-Pouch/vaginal fistula?
DeleneSCDeleneSC
n/a Aquaphor Healing Ointment is more clear, and in my opinion, creates less of a mess, especially if you don't over-apply it. I also was able to tuck a cotton round (they're used for makeup removal) over the area where the seton came out - or you could use a small piece of gauze - and that helped to both collect any discharge which prevented it from spreading and causing extra irritation, and also prevented the "gloppiness" of the barrier cream from spreading. Hope this helps. [ more ]
StarryNight N/A, I wondering which barrier cream you found most helpful with the seton. I've had 3 draining setons placed within the last 6 months (3 separate EUAs). I also have a bidet which helps tremendously. However, I have issues with barrier creams and the muscus-like (thicker) drainage of stool from the setons. I've tried Ilex, Calmoseptine, Z-Guard, and Resinol. They all seem to result in a gloppy mess near the setons. Any advice would be greatly appreciated! [ more ]
DeleneSC Thanks Scott, and N/A. I'll keep all that in mind. No not trying to get stoned. I hear you don't get the head high because the suppositories bypass the liver. I'll let you know. Starting today. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Hernia Surgery
CalifornicationCalifornication
Raj Now you already have many good advices here. Hernia isn't curable per se by medication, you can ofcourse prevent it from happening or if its there you can inhibit it from growing any further. The only sure cure is a surgery.My friend had one while working out , its been 2 years his pain has almost reduced to none and its size also shrunk to nothing. He took a lot of precaution as in workout belts and applying warm pads everyday and does it till this date. He was advised to get operated but... [ more ]
Lesandiego I had it done with laparoscopy..5 years ago. Took a week off work to wait for the gas swelling of your belly to go down. Now, I have zero scars and zero issues. I'm not sure where my incisional hernia was located, but after surgery, the told me I had 3 hernias. Probably because my 1st surgery was emergency slice and dice by a general surgeon. [ more ]
Californication He said the same regarding not lifting more than 20lbs. Maybe it was 25. Can't remember but he would have freaked if he knew I used to leg press 350! [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Xanax use
J Jonathan
Californication From all the scare stories I have read, you would be considered very lucky! [ more ]
Pouchomarx Well I don't have an addictive personality so I had no issues with it, as well as pain meds... I was on high doses of them several weeks at a time here and there and could stop them the next day no issues. just me I guess I am lucky [ more ]
Accept It I recently replaced Ambien with Xanax for sleep aid. It has definitely helped me sleep and has also helped with diarrhea. I was afraid of addiction to ambien plus needed more and more for it to be effective. I don't take Xanax during the day as it too makes me sleepy. I have learned to manage my anxiety with deep breathing, exercise and ongoing therapy. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Would you go back to the ileostomy?
A Andreita
ANbooknerd I am hoping it won't come to having to go to a permanent ileostomy although my GI was asking questions after my pouchoscopy yesterday. The reason I don't want to go back is that during the approx. 6 months I had the temporary I was severely dehydrated, landing in the hospital for over a week, and then was on 1500 mL bags of fluid every night until my pouch could be connected. This happened almost immediately after surgery. That and the complication of waiting to see if an RV fistula would... [ more ]
LORI726 The temp loop ileo has two openings. One that is on top of the stoma (think of it like a little volcano on your belly) where food travels from your mouth and comes out at this part of the stoma. There is another opening at the base of the stoma which is a slight opening that is flush to your belly. That opening connects that part of your stoma with the rectal region that is no longer in use. I am having a lot of problems with mucus build up in my remaining j pouch/rectal area so mucus is... [ more ]
Pouchomarx what types of major problems? [ more ]
See all 37 replies...
J-Pouch ForumsGeneral Discussion
Suboxone For Long Term Pain Management
CalifornicationCalifornication
Californication For dependency on pills to manage pain. FYI, it can be used off label, as my doctor will do. There are some people that are resistant to typical anti-depressant medication and Suboxone can be used for to manage depression. [ more ]
CTBarrister Suboxone is a drug that is typically used to treat pain medication addicts in substance abuse treatment, to wean them off more addictive narcotic pain meds without inducing withdrawal. Needless to say I am curious as to why you were prescribed this drug originally. https://en.m.wikipedia.org/wik...prenorphine/naloxone [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Cufitis
K kentuckyboy
kentuckyboy Thanks for the suggestion. Yes, I have tried Canasa years ago. It gave flulike symptoms and made the cuff worse. Tried it again 2 years ago, same thing. [ more ]
Scott F Since you don’t list the things that haven’t worked, you’re likely to get suggestions of some of those things, and it will be hard to identify any that your doctor might have missed. For example, have you tried mesalamine suppositories (Canasa)? [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Fiber Making you go more often
A arodecker
arodecker Bobish!! Thank you for your advice!! Thank you everyone for your advice I really appreicate it!! I am still trying to figure it out but I'm glad I have a community to ask questions like this. Thank you again! [ more ]
Bobish Interesting... Does literally nothing for me unless I give it at least a 20 to 30 minute headstart... I don't even have to take fibre with food, as long as I take it twice a day and before I eat it still works. Taking it after I eat obviously doesn't help at all.. That's quite useful if going out for a meal though Arodecker, if fibre isn't working for you my to tip is to stick with it a bit and try taking it early.. you have nothing to lose, then again if you are already happy with your... [ more ]
Scott F I take the fiber right before eating. It seems to work fine for me used that way. [ more ]
See all 14 replies...
J-Pouch ForumsPouchitis
Pain coming from J Pouch ‘Bulge’
ShylockShylock
Peter I had my J-pouch surgery done in 1996-1997, Lately I have extreme burning at my anal site along with slow leakage but lengthy flow time. I'm almost 83 and this interferes with my sleeping and leaving the house .Please send any ideas or help. Thank you Pete [ more ]
Raj I think its probably a hernia you're witnessing. Did you do any heavy work/exercise in the recent past ? Many a times that triggers the hernia site. You should definitely get it checked. Hernia are rarely life threatning but they cause excruciating pain. The cure would be a minor surgery where they insert a mesh to fix it up. It could also be pus but I doubt it as you said the pain comes in episodes so its likely to be hernia. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
chronic pouchitis--- mesalamine?
KR Katie R
CTBarrister Not for me. I used it in capsule form as Pentasa and in enema form as Rowasa and suppository form as Canasa. None helped. For chronic pouchitis, first line of treatment is antibiotics and the second line is biological drugs like Remicade and Entyvio. The patients who experiment with other modalities as exclusive treatments do not usually have any long term success. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
CT Scan
AlexisAlexis
CTBarrister Poucho, As I mentioned I also get my test or scan results online via the Yale Health Network which sends me an email alert to log into my account. Sometimes I see the scans before my doctor does, sometimes not. Because of Thyroid Cancer my TSH and tumor markers are checked quarterly and for my Remicade treatment my liver chemistries are blood lab checked monthly because of methotrexate. My endocrinologist will usually shoot me a quick private message on the Yale Health Network offering his... [ more ]
Pouchomarx I typically get all my results online before the doctor even sees them. Typically if I have a question on the results and I call, the doctors office will sometimes say the doctor hasn't even gotten to them yet. [ more ]
Janiep CTBarrister... you are right! After going through different cancer 3x and I’m being treated at Johns Hopkins I have found that local hospitals need to learn about bedside manners and should treat patients as people... not just “the disease”. My Hopkins doctors treat me as a person that’s had a hard time. They have heart and mind ... they’re geniuses. Maybe I just got spoiled there. Janie [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Full time job with jpouch
M maddie18
Raj I eat everything now except chocolates , they still somehow manage to give me instant diaroehha . Also since I workout after office so my sugar intake is also very low. I practise 16/8 intermittent fasting now , wherein my first actual meal is at 2 pm lunch time. Big box of rice and eggs or chicken. Next meal at 5 and then some preworkout snack at 7 and post workout one protein shake and dinner at 9:30 ish. I mostly eat chicken , hard boiled eggs, rice , brown bread, peanut butter , some... [ more ]
Cokey Scott Hi, I'm new to the community. There is some good advice on here. It's great to be in touch with common ppl. I wonder what some ppls job titles was with this issues and how they manage. What I will say I've been on my job for 26 years. Had UC since I was 19, now I'm 50. I work customer service for 14 years and the remaining behind the scenes with my own desk as well as office, that was comfortable. Working at a customer service desk waiting on ppl with my issue and now having a j pouch and... [ more ]
chal What is your diet like. I kept mine very bland for years just because of fear of causing problems. I eat more of a normal diet now but still don’t eat fruit, only well cooked vegetables, no soda, no alcohol, no chocolate, nothing spicey. Sounds terrible, but there’s plenty of other things or I just eat a very small portion of things that are no no’s. This may not be a problem for you at all. Just a thought. [ more ]
See all 14 replies...
J-Pouch ForumsHelp! Need advice now!
I can't control the pain
A Andreita
RedRocker Oh good to hear it wasn’t time released. I didn’t know they had immediate release. Sorry. Funny on the rectal reference, my gyno still gives me a heads up that she’s doing the rectal and I always say, “Good Luck!” 😆 [ more ]
Andreita Nothing they gave me was extended release. I'm aware I might not be able to absorb it. Little anecdote from the wake up room. I was nauseous and I requested Phenergan because zoloft never helps. My IV wasn't fitting for a dose so they discussed giving me a rectal suppository. I had just woken up and I kept telling them "I don't have a rectum anymore". Not sure why they still tried to give it to me. When I finally convinced them I ended up with a small shot and that was OK. [ more ]
RedRocker That’s extended release. I never take anything time released. They gave me that after my last surgery and 3 days later I ended up in severe pain with an intestinal blockage and had to sit it in the hospital for 12 days. Glad pain is better. Hope you’re healing well. [ more ]
See all 9 replies...
J-Pouch ForumsPouchitis
Isagenix
MelBMelB
Doggtired I used the shakes and they went right thru me as well. I think too much sugar? I have used other shakes that did not do that. My rep said to try non-dairy. I dont like auto ship either. They dont make it very easy to purchase and its expensive [ more ]
Doggtired I would be interested in your regime and results. The shakes do go right thru me do you use them anyway? I want to use sone system for nutrition and weightloss. [ more ]
Melfie Hi KellyParr, can I ask ehy yiu dont take the magnesium? I dont use Isogenix (infact no idea what it is), but i do take magnesium capsules and protein powders post workouts to help with muscle recovery. I have been recently having huge issues with my jpouch and am currently undergoing investigations. Have just completed a 2 week course of Cipro/Metronidazole which helped alot. I have had to drop my trainings due to being unwell and am gaining weight. I would love any suggestions on dietary ... [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Barium enema test
S Sunflower70
Deb C It's been 25 years since I had a defecogram to try to figure out why I was having trouble emptying. I don't remember what prep was involved but I didn't get an answer from the results. After further research figured out I have a rectacele. I don't know why it never caused any problems before my surgery. [ more ]
Scott F It’s more common to do a defecogram than a pouchogram to figure out emptying difficulties. Both involve squirting contrast medium in rectally, which is the “barium enema” part, but the defecogram observes the actual attempt to empty the pouch. It’s sometimes the only way to see a pouch prolapse. It might be best to know which test is planned, or even to ask your doctor if she’s ordering a defecogram. [ more ]
Sunflower70 Ok, so I decided not to get this test done at the local hospital because clearly the scheduling person who has been there forever had never heard of a j-pouch, which means that they must never get any experience with j-pouchers. I'm petrified of the tech doing something wrong and endangering all this expert handiwork inside me. So, I'm going to reschedule for a place where they actually do the j-pouch surgery. That way, I'm sure that the radiology department experienced with j-pouch... [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
General comment on pouchitis
D DJJ2019
maddie18 Me too!! I had symptoms since January of this year and I didn't realize what I had until the middle of May when the symptoms turned really ugly and brought me to hospital. Two different antibiotics, total 2000 mgs per day, three weeks off work and a 1000 mg suppository to use for 6 weeks. Horrible!! I want concise answers. Pepto does help. I find buttermilk helps too. I just learned buttermilk is beneficial for the digestive system. Does anyone think espresso or coffee causes symptoms? [ more ]
lholdem I might give Pepto a try. The sugar thing is probably a good idea too... gotta get my self-control in shape! I’ve never been completely inflammation free since surgery. After my annual scope last week they decided to put me on a round of Cipro 😞 I’d love it if I could figure out something where my pouch actually looks completely healthy. [ more ]
DJJ2019 I had not heard that Pepto chronic use can damage the liver. [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Sugar and pouchitis
M maddie18
Terradon I take a probiotic regularly and avoid sugars in all forms like the plague. Keep the good flora up and the stress down! [ more ]
Scott F I eat fresh fruit every day. I did try a very low carb diet for a while, which excludes fruit in any quantity, but it didn’t seem to provide any benefit for me. [ more ]
Cokey Scott This sounds awesome! Can't wait for my take down, and to be able to eat fresh fruit. Hoping and praying for everything to fall in place. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Lymph nodes
AlexisAlexis
Terradon Yep, my doctor told me that many lymph nodes were removed with the colon, so the others get overloaded. [ more ]
Alexis This is exactly what scan says. Keep in mind they did a scan in 2013 and did a needle biopsy and all came out good: Mildly enlarged periportal lymph nodes are unchanged. Prominent abdominal and pelvic lymph nodes, particularly within the right lower quadrant mesentery where they are mildly enlarged, are present. Overall these are improved from September 2013. [ more ]
CTBarrister Swollen lymph nodes were observed/felt in my throat by my PCP during a routine physical examination in May of 2015, 4 years ago. I could not detect the swelling myself. Turned out to be thyroid cancer. I had the thyroid and two lymph nodes removed. It was considered stage 3 cancer because the tumor had begun to metastasize into the lymph nodes. I later asked my surgeon how he knew what lymph nodes to remove and whether he got the cancer in all of the adjacent lymph nodes. I was startled by... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
I'm excited and scared - takedown in a week
A Andreita
Terradon I am so glad you are doing better. I am 15 years out, and the first several years were a very difficult transition. Just remember, each day where you are at healing wise is just a train stop along the way, but not your final destination. The stop might feel gross, be difficult and stinky and not what you expected. But it's not permanent. I always tell myself to not buy real estate in those spots, because we are heading somewhere else at the end of this journey. And where I am going is better... [ more ]
Andreita I'm so sorry you went through all this. Maybe it's worth rethinking about the 3 step surgery again. Because they way you are right now is no condition to stay in. I had problems with my bag too until my ostomy nurse told me there is solutions for everything and she helped me to find a system that worked for me. I haven't had problems with it since then. I made a thread here asking if you would go back to the ileostomy if you had to. I definitely would if my J-pouch failed. I hope you find... [ more ]
Andreita Thank you so much everyone. That's why I love this community. I'm feeling much better now. Today was the first morning I woke up without anxiety. I'm eating. I can hold it. I even passed gas already. The wound is closing fast. I only get up 1-2 times at night which is totally acceptable. 😊 [ more ]
See all 15 replies...
J-Pouch ForumsFAP Forum
Jpouch bud or.something else
BorislavBorislav
Bobish This could be mositure related. The area needs to be kept clean and dry. Washing with water each time is not good for the skin. The skin needs its natural oils and if you wash them away it will get sore A cream like Calmospetine is good, but not as good as clean and dry because cream can trap bacteria and moisutre close to the skin and cause an infection too. I only use cream when im really sore or itchy. If you have hair there, you could shave it (hair traps moisture and dirt too), if you... [ more ]
JHendrix Hm. I don't have any ideas. Maybe others will. Is it something you can show a doctor? if it's something that comes and goes maybe taking a picture could help the doctor to diagnose. Good luck to you. [ more ]
Borislav When.touch buds.but.very hard.buds and dissapear last year now.I.have them back [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Calcium suppliments
D Dunninator
Winterberry There are also liquid calcium supplements available. Try Whole Foods; they always carry choices in drops, chewies, liquids. I've seen chewables at Costco. I've had medicines come out whole if it's in slow-release formula and I had to switch to quick dissolve so I could benefit from it. Something to remember if your doctor prescribes slow release meds for you. [ more ]
CTB23 I take chewable vitamins and calcium also. [ more ]
ytcrockpot I used to have the same issues with whole vitamins, now I take Tums which is Calcium carbonate. [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Anal Pain After J-Pouch Creation and Take Down
WH Wendy Hunter
Wendy Hunter Thank you for your information, Scott. Much appreciated. -Wendy [ more ]
Scott F Anal fissures can also be treated with topical nitroglycerin or nifedipine. In tougher cases Botox injections sometimes help. [ more ]
Wendy Hunter Thank you so much for your quick response and detailed suggestions, Aimee. I will definitely follow up with your information and purchase a zinc oxide cream. Sometimes it's the easiest solutions that work. Have a great evening! -Wendy [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Experience with J-Pouch Crohn's, Stricture, Seton, J-Pouch/Vaginal fistula, Humira? HELP!
DeleneSCDeleneSC
Jaypea I live in British Columbia. Michelle Merry [ more ]
DeleneSC Yes, that is the one she is leaning towards, because she can adjust the dosage. Thanks Scott. [ more ]
Scott F There are certainly some significant convenience differences between the various biologics. The best one is the one that works, though, regardless of convenience. Remicade may have the best evidence that it can help with fistulas. Your doctor may have up-to-date information on which medication is most likely to help. That’s where I would start. [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
Internal JPouch architecture
C Cajundoc70460
Scott F There’s no clear connection between low carbs and probiotics. Not everyone benefits from either intervention, and some people benefit more from both than from one. These are fuzzy interventions that are tricky to evaluate, requiring patience, consistency, and objectivity, and they don’t tend to completely eliminate episodes of pouchitis, nor are they likely to completely eliminate the need for more definitive treatments (e.g. courses of antibiotics periodically). They may reduce that need. [ more ]
CTBarrister I have no burning or pain during defecation, but closer to takedown I did. The reason you are having that sensation is that it takes a while for the pH level of the stool to adjust after takedown. I may have had that for up to 2 years after takedown. It has nothing to do with inflammation and everything to do with pH of stool. Butt burn is for the same reason. The stools are too alkaline and this changes over the course of time as your body adapts. [ more ]
Jfill21 CT , you mentioned the various types of low level chronic inflammation. Does that cause burning or any pain during defecation? I’ve had cuffitis and Pouchitis (not continuously but mostly) since takedown 18 months ago. I still burn with a bm but not afterwards like I used to. [ more ]
See all 32 replies...
J-Pouch ForumsWomen's Health & Pregnancy
When to get pregnant?
D Dally
Brittanyanna From what my surgeon told me is to wait a full year, that way your body is fully healed and your'e adjusted to this new pouch life. I do know that it is difficult for women with J-pouches to conceive so I get wanting to start trying immediately. But ultimately you know your body best. Good luck with TTC, I'm in the same boat myself. I'm a year after my final surgery this past March. [ more ]
Dally My surgeon told me that we can start as soon as we'd like to! Which is great but I just wanted to see what other people have experienced before we make the decision! [ more ]
Andreita What did your surgeon say? [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
J-Pouch 1986, now have Crohn's and vaginal/pouch fistula. HELP!
DeleneSCDeleneSC
DeleneSC I now have Crohn's in my pouch and a stricture, although I've done a clear liquid fast for the last 14 days and that has helped a lot. I also have a very active pouch/vagina fistula that is really bad, as you can imagine. Colo-rectal doc wants to do a SETON procedure. They want to also start me on Humira. I'm really hesitant about both, and I don't like taking any meds. And I don't want the SETON because I've heard of it's low success rate, as N/A. HELP. I think I'd like to start on Humira,... [ more ]
n/a I too morphed into Crohn's, about 15 years into my '92 jpouch. I'm 62 YO. Fistulas, abscesses, etc. I tried a lot of homeopathic supplements, diets (sorta), etc., but nothing made a difference. Had 2 setons, still had pain, accidents - it was a real struggle. My surgeon (Cleveland Clinic) did not recommend fistula surgeries, her experience was that most fistula surgeries fail. I was not interested in biologics, as I did not consider them a long-term solution; indeed, none of my doctors... [ more ]
Scott F My advice is to listen to your doctor. Your dietary changes aren’t having enough of an effect for your current situation. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Question for Long Timers
C chal
Scott F Are you on any meds (especially new ones)? [ more ]
chal Thx Scott. Maybe a little more gas than normal. No feeling of needing to poop. No other symptoms. One thing that I have noticed over time is that when I have a pouchitis flare, my symptoms seem to be different than they used to be. Maybe this is just another flare with ever changing symptoms. Normally I would just have gas and urgency. Not stomach ache. Guess I just need to go see my doc. [ more ]
Scott F 1) Are you noticing any more gas than before this pain started? 2) Is the pain associated with a need to poop? 3) Are there any other symptoms, like nausea? [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
How to clean the bottom of the wound
A Andreita
Andreita Ok thank you I'm a nerve wrack today [ more ]
girlunky You will know if there is infection - the skin around would get red, swollen, and sore., or hot. You could have a fever. Otherwise try not to worry too much. And call the answering service or the office, your dr. has someone covering...I bet they get a LOT of calls from nervous patients after surgery. [ more ]
Andreita I can't handle showering twice a day and was never advised to do so. So I'll just leave it be. I tried calling but hung up because it's a stupid issue to be bothering them about on the weekend. Will it get infected if I just leave it be? Follow-up is in 4 weeks he's on vacation now [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Third surgery coming up
A Andreita
Andreita I stopped going about three hours ago. I think something is wrong [ more ]
Andreita Second night home and I've been able to sleep through. Last night I didn't even need the restroom. I still have zero feeling there. I feel when I have to pee and I kinda rely on that as an indicator for now when I go poop. Emptying is definitely different as I have to replax my muscles instead of strain them. I'm also experimenting with my beloved squatty potty that I got a few years back. Not sure how it works best yet. I will actually put on real underwear as I'm confident I won't have an ... [ more ]
Angieb Hi Andrina glad everything went well .👍🏽 [ more ]
See all 39 replies...
J-Pouch ForumsHelp! Need advice now!
constipation with J pouch?????
MIKEEYMIKEEY
MIKEEY Thank you, have tried just about everything but to no avail thus far [ more ]
Raj Are you eating too many bulking foods or not chewing food properly ? These small things matter a lot to me . I get constipated if I am dehydrated or I eat too many bananas/peanut butter in one sitting or if I am not chewing my food properly. As a solution I drink milk with pysllium husk to clear me up if I get constipated. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
When the diarrhea and discomfort become too much
AI Accept It
ytcrockpot I eat very little white sugar, I use agave, honey or maple syrup if I need sweet. I don’t avoid fruits [ more ]
maddie18 Wow, that's great to hear!! Do you avoid sugars? If so, does that include fruits? [ more ]
ytcrockpot Pepto, Imodium and Vicodin has been part of my life for a long, long time. Although since changing my diet, I hardly take them anymore. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Imodium
A Aimc
Aimc Bubba, thanks for the heads up with buy one get one half off at CVS. I agree about the forever search. It's sad. Give us back our good pricing for imodium. Lomotil doesn't work that well for me. I have to take more of it. Aimee [ more ]
Bubba1028 Thanks! I’m always keeping an eye out for that. I usually get mine at CVS when it’s buy one, get one half price, and I have a 25% off coupon or reward bucks or something. Too bad we’ll have to be on it forever and I still take 2-4 per day! Thanks again! [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Diet post takedown
Cinder23Cinder23
Bubba1028 I’m almost two years post takedown and I see things come out almost fully in tact like lettuce, the remanence of berries and fruits, etc just several short hours after eating them. Just the name of the game I guess. Corn is an odd culprit. I can see that a few hours or a day later! You just never know (as I scratch my head). [ more ]
Raj Fruits , dairy items , nuts , and some other fiber rich foods can come out partially or wholly intact. Its normal. I used to drink a big glass of fruit and vegetable juice just to see them come out lol. Till you have the bag its easy to eat anything as they all just collect in the bag but once reconnected you'll probably have to maintain a food diary. I can eat pretty much everything now but sometimes I can see what I ate comes out . [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Getting ready for daughter to have step2/3
I Ibdmom
Andreita I had mine stapled and my mucosa stayed intact because I could become incontinent without it. Stapled because of better outcome. I wish you all the best with whatever you decide. I definitely don't want to be in your shoes. That's why I won't have children. [ more ]
Scott F The mucus discharge from a disconnected rectum isn’t a predictor of cuffitis. Have you definitely decided on the hand-sewn technique? As long as the surgeon is very experienced with hand-sewn procedures all should be well. [ more ]
Raj First of all I think your daughter won't have too many issues. I know you are the mother but she's a warrior . She's had a bag and handled such a big surgery at that age , I am sure she'll handle this one too. I went for the staples one simply because its something done more than other alternatives . Remember this a doctor may not be perfect at something but things he's been doing overtime are easier for him to handle plus he can manage complication post ops better if he has done something... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Artificial Sweeteners and Incontinence
lclassenlclassen
Bobish Lclassen, I posted about my experiences with this recently. According to the fodmap diet xylitol etc is a polyol. I like to work backwards a little, so I looked for other foods high in polyolys and found they also upset me. I avoided polyolys and saw a real improvement. If you have real concerns you should probally try the FODMAP diet properly.. you can get apps on your phone (I use a free android one) which is really useful, you can apply filters to remove the types of foods you want to... [ more ]
Raj Can't say about others but sugar specially artificial ones kill my pouch like no other food . Anything too sweet I get instant diaroehha. I take small amounts in my tea/coffee now and some maltodextrin in my whey but thats a small amount. [ more ]
maddie18 Hi Scott I never had a problem with incontinence prior to bowel surgery. [ more ]
See all 5 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

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.
×