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J-Pouch ForumsHelp! Need advice now!
Non surgical option to live with a fistula?
TL TONY LAVICTOIRE
LORI726 And I just want to reiterate that I had rectal symptoms off and on the entire life of my J pouch. I don’t want to freak you out about losing your pouch! I had skin tags and fissures and my diagnosis was changed from UC to Crohn’s. So everyone’s story is very different. [ more ]
LORI726 Just saw this separate post. Yes, I agree there is no easy way to repair a fistula. I personally had bands or setons placed in the tracts to keep them open and prevent them from closing and causing an abscess. Shen wanted my to try hyperbaric oxygen but it made no sense in my head how oxygen could help close a tract that is being held open by a seton and it is a lot of dedication to do hyperbaric oxygen. At that point, I was 95 percent ready to give up my pouch anyway. My surgeon at... [ more ]
Pouchomarx fistulas don't just go away and are very hard to surgically repair. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Diet
D Delaine
Scott F Delaine, has it always been frequent, or did it develop more recently? How frequently are you going? What have you tried so far? [ more ]
ytcrockpot I believe when you get past the 30yr mark not much works with fiber or diet. I’ve been struggling for the past 10yrs trying to find something that would make it better. Unfortunately opioids are the only thing that helps me 😢 [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
If there was a magic potion that you could take that made it so you never had IBD, would you take it?
FM Former Member
Former Member LOL, you are funny! XD [ more ]
Mysticobra Magic potion or colon removal and all that goes with that? (not even gonna mention the decades of suffering. Oops already did) Magic potion. All the misery and pain. A magic potion I would use in a heartbeat. [ more ]
Kangaroo I 100 % would have taken it. [ more ]
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J-Pouch ForumsGeneral Discussion
Likely Crohn's??
L lhh65
CTBarrister Fight like a girl: My GI at the time of all of my testing, who was a protege of Dr. Shen that took a job at Yale and has since moved on to NYC, essentially said the thing as Dr. Shen. He went back and forth and back and forth on whether it was Crohn's or not. I think that for him, it was really an academic challenge more than anything else, but when the diagnostic testing costing tens of thousands of dollars and which didn't need to spent came back inconclusive, he threw his hands up in the... [ more ]
Fight like a girl amen to that! Dr Shen has been testing me for yrs for crohns. Actually his thoughts were those exact words. Call it what you want but find out how to help with it. [ more ]
CTBarrister Laurie, Like you, I have strictured J Pouch inlet and inflammation above the J Pouch in the neoterminal ileum. Like you, I had the MRI Enterography, the CT Enterography and the Prometheus Blood Test. All were inconclusive on whether I have Crohn's or not. Here is my opinion which I have stated repeatedly on this Board. Whether it's Crohn's or not does not matter. It's inflammation and at the end of the day you need to treat it whether it's in your J Pouch or ileum and regardless of what you... [ more ]
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J-Pouch ForumsGeneral Discussion
NE Florida
E ElizaB
ElizaB Thank you all for your prompt responses! I will set up an appointment with Dr. Farraye (thank you, Marz) as soon as this Covid issue settles down and let you know how goes. It's wonderful and reassuring to know that there is a pouch expert in my area. [ more ]
MIKEEY Eliz B so sorry I don't know anything about Jacksonville to help you, so sorry. Good luck there and may God be with you. Michael [ more ]
marz Dr. frank .farraye recently started at Mayo in Jacksonville after working in Boston for many years. He was recommended to me by Dr. Shen, who ran the pouchitis clinic at Cleveland Clinic , and recently moved to NY Columbia Hospital. Dr. Farraye knows a lot about pouches according to Shen, and does scopes of pouches. I had an appt. with Dr. farraye in Boston—but then he moved. I don’t know how hard it is to get an appt with him. He recently did a webinar for the chrons colitis Foundation (... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Well, its time for my take down!
Asa LayAsa Lay
Asa Lay No. He did not. [ more ]
Aimc Wow good luck. Just be kind with yourself while your pouch adjusts to being your new colon. Honestly, if you just eat a healthy diet and walk, walk, walk, you should be fine. You can add things you might want, such as nuts and fruits back into your diet little by little and see how things go. Let us know how you are doing. Aimee [ more ]
Winterberry Go easy on the nuts and seeds at first. They are "insoluble" and will not break down in your gut. They will exit your body looking the same as they went in (recognizable) and because they are hard and have sharp edges (!!) it might hurt coming out, or irritate your new pouch. Even though you could manage nuts, seeds, fruits, etc., before your surgery, your small intestine was only absorbing nutrients and pushing through these foods toward your large intestine (your colon). Now it will be... [ more ]
See all 18 replies...
J-Pouch ForumsHelp! Need advice now!
Ultra sound probe safe for J-Pouch?
TL TONY LAVICTOIRE
TONY LAVICTOIRE Thank you Jaypea! [ more ]
Jaypea Might I suggest an MRI is the best diagnostic tool for abscesses/fistulae. The only person I would allow to place an ultrasound probe into my rectum would be my very experienced colorectal surgeon. An ultrasound technologist would have very limited experience with this and the chances of disrupting the pouch may be VERY high. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Trouble going/straining
K Kh1988
Scott F Unless what’s coming out is hard then this isn’t conventional constipation, and laxatives probably won’t help very much. Are you drinking plenty of water? What is the consistency of the stool? You could have a prolapse, which is when part of the pouch moves to block the exit when you bear down, or it’s also possible that your sphincter is tightening when you mean to be relaxing it. Four times a day is relatively infrequent for a J-poucher, which may be fine for you, but you might want to... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Do you all have the rectal cuff too?
FM Former Member
bowelsofhell My doc's preference for the pouchitis/cuffitis combo is Entyvio or Humira, but Remicade's the likeliest replacement if the Humira stops working. It's been a relief during Covid-19 lockdown to have something easily done solo, at home. [ more ]
Former Member Might want to try Remicade, that works better I hear [ more ]
bowelsofhell I've struggled with cuffitis for much of my pouch's existence. Usually it's just inflamed but sometimes it also gets ulcers. Humira has helped a lot with that. [ more ]
See all 17 replies...
J-Pouch ForumsGeneral Discussion
Univ of Cincinnati
A AFvet
Aimc Yes it prob. will be. Stay hydrated! Aimee [ more ]
AFvet Good so far, only issue is about 1500 ml/day from the loop. Feel like I’ve been keeping up with hydration so tinkering with immodium/fiber/diet. If it continues to be that high, I’ll call the surgeons office. I’m sure next step will be Lomitil? [ more ]
Aimc Oops already had your surgery I see, how'd it go? [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Peri-anal tears
LC Linda C.
Ljz Ilex is a life saver! I order about $150 worth every 6-7 months to save on shipping. I initially tired 7-8 other products until I found Ilex paste. Amazing! Hope it works just as well for you! i use Vaseline to gently remove after BMs. Then I start fresh. good luck! [ more ]
Linda C. Thank you very much for the ilex suggestion! I just ordered some. [ more ]
Nara Yes ILEX really work like a miraacle [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Problems with Oatmeal
H Hope 777
KiwiPoucher I'm good with oatmeal, provided I soak the oats in milk overnight before cooking them. [ more ]
SuzieB You might want to check out if the type of oatmeal you are eating is high FODMAP. Some oatmeals are... you might have a sensitivity. Maybe try a low FODMAP oatmeal and see if that makes a difference! [ more ]
Former Member Oatmeal moves things long for me, the only fiber I can tolerate lol [ more ]
See all 15 replies...
J-Pouch ForumsHelp! Need advice now!
Unable to pass gas
A Andreita
Andreita I'm on probiotics four times a day and dilate once a day. Once I lose control of my bowels I'll start cipro. But it hasn't happened yet. I'm not getting worse. So I guess I take it. [ more ]
Former Member Are you doing better now??? [ more ]
Andreita I don't think my pouch can mature with constant inflammation I haven't asked my gi about the suppositories yet there is no need to switch. I just think it would be logical but I'm no expert [ more ]
See all 48 replies...
J-Pouch ForumsGeneral Discussion
Have you guys done Pouchoscopys awake? Did it hurt??
FM Former Member
CTBarrister It's only necessary to have an anesthesiologist present for propofol because it puts you out completely- you are unconscious. Probably the same in UK. Conscious sedation can be administered by anyone, possibly including a trained monkey so long as the correct dosage of fentanyl/versed is put into the IV line. My GI offers me a choice of level of conscious sedation: light, medium, and heavy, although he has names for them like "twilight" for light and "hammered" for heavy. I usually choose... [ more ]
Former Member Oh great! Thanks! [ more ]
LORI726 I guess I should add that the doctor also took biopsies during these “awake” pouchoscopys. Don’t feel a thing! [ more ]
See all 32 replies...
J-Pouch ForumsGeneral Discussion
Burn/discomfort just inside anal opening ?
PouchomarxPouchomarx
scallop I don't know why it travels down your leg but I think you should try a pelvic floor physical therapist to see if they can loosen the muscle in your rear and any muscles from your leg that might feed into your anal canal. Seems like a long shot but worth a try. I hope you find something. [ more ]
Pouchomarx hi, still ongoing and when I get that burning pain I am now feeling burning in my left shin and top of my left foot. but yes when I squeeze my sphincters it feels worse. I have been told it could be a nerve issue from surgery, but maybe what you state is it, a nerve going through that muscle and when I tighten it goes down my leg ? it sucks and it hurts. my foot pain has been getting really bad recently [ more ]
gleam I have the same situation on the same side. While not a fix, the best soothing ointment I’ve found is Aquaphor. It works great on my tattoos and butthole. [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Do probiotics really prevent pouchitis?
A Andreita
RondaC I ordered my Visbiome from Amazon. It came in a cooler with ice packs [ more ]
SuzieB ❤️
SuzieB @Andreita I used to take it 2x a day (morning and night) when I had chronic pouchitis, but now I just take visbiome 1x a day in my smoothies for general health maintenance. It took me many, many years to get to a point of better health through learning about my body, but I think you can view pouchitis as like other infections... if your body isn't as healthy as it could be, you're way more susceptible. Here is some of the routine I've found that has brought me from chronic pouchitis and... [ more ]
See all 17 replies...
J-Pouch ForumsGeneral Discussion
Feeding our microbiota
M msh98991
SuzieB ❤️
LBA Here is the link https://www.diagnosticsolutionslab.com/tests/gi-map which gives you a lot of info. I have ordered it through my health coach but I think any doctor can order, or you could ask the site for a referral. They have a PDF on the site that goes through all the various bacteria, viruses, etc that they test for and what it means. [ more ]
msh98991 Can you share more about the GI Map test? How do you get that done and who knows how to read the results? [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Did your pouchogram hurt too?
FM Former Member
Former Member Good question! I actually had my J-pouch for almost 6 years now. I only had to do it once, thank goodness! What about you?? [ more ]
Bubba1028 I don’t remember mind hurting. Someone told me to tell them when it started to get full so I remember wanting them and they ended it soon after. I was able to empty it right away. They were pretty used to doing the procedure so they were super nice and helpful. Sorry you didn’t have a good experience. Are you having a takedown soon? I only ask bc is it something that you have to go through again or are you done with it and ready to go with the takedown at least? [ more ]
Kangaroo I'm definitely glad I only had to do it once. It caused my iliostomy bag to majorly leak and I wasn't prepared for that. So, I definitely recommend people bring extra bags and supplies when they have that procedure. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
How to get insurance to pay to see Remzi if out of town?
ktakta
Pouchomarx He will do what he can, hes awesome. He did my redo in Cleveland before he left for NYC, and we still talk. My sister has Crohns and she was having issues in Orlando where she lives, and he called down to that hospital to a colleague he knows there and got her in the right hands.. [ more ]
Former Member Hi Kta, I did not want to do discourage you, I just wanted give you an idea about logistics so that you can plan better. If you can save some money for the flight and for a week hotel stay around town, you can do this. Many people do it. If you would have to do this alone, you could always order food to the hotel, (probably just plain cheese pizza, and chicken soup) and make doordash to deliver groceries to your hotel room, but it would be easier if you would have someone else with you to do... [ more ]
kta Lots of good advice. Thanks. I like the idea of seeing if they will recommend someone closer. He"They have to have trained a lot of surgeons. The plane trip across the country would be horrid, especially with no opioids. Sometimes I feel like the rule makers sit in white rooms with no dust and decide our fates. The regulations do not always meet reality. Thanks. I meet with a surgeon on Friday. Lots of questions for her. [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Spasms
A Alyssamarie
Alyssamarie Hi, @Scott F thank you! I just reached out to my Dr for antispasmodic. So just waiting for his reply. Also, they are just a feeling. I’ll run to the bathroom thinking I need to use it, and I’ll just end up sitting there and nothing comes out. [ more ]
Scott F I’d suggest two things: first, pay attention to whether these are actually forcing you to poop, vs. just feeling like it. There’s a big difference between temporary discomfort and a mess in the pants. Second, give your doctor a call. They may suggest trying an antispasmodic like Bentyl or Levsin. Good luck! [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Please Help Me
P Pouchbro
LBA You've been through the wringer! Sending my best virtual support hugs. I had a jpouch for 30 years and recently got an end ileo. I'm happy with it and healthiest I've been in 10 years, so just attesting that life can get much better if the jpouch just doesn't work for you. I agree with others in regard to diet being important. The Heal Your Gut Guy has a lot of free videos on youtube talking about the key steps of eliminating things that hurt your gut (hard to digest foods, bad bacteria..),... [ more ]
dd Sending hugs and prayers to you !! Sounds like you may have to go back to the ileostomy to give your body time to heal and strengthen. Did you look into applying for assistance with healthcare ? Keep us updated and deep cleansing breaths in and out always help relax me. 💐💐🌸🌸 [ more ]
jruggieri15 ❤️
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J-Pouch ForumsGeneral Discussion
Coffee enemas for liver detox
N navajocr
navajocr I appreciate everyone's input/concerns and they are all valid. Thank you. I'm wondering if there is anyone in the group who has actually tried coffee enemies and what their results were? [ more ]
girlunky Scott you are right on with that. J pouchers don't really have to worry about anything hanging about too long in the colon, as we don't have a colon. And our turnover is extremely rapid. I don't want to put anything uncessary into my body, and especially not up my poor sore butt. I would recommend caution with cleanses, supplements, herbal extracts. They are not benign. Same goes for OTC medications, and prescription medications. [ more ]
Scott F There are certainly plenty of people advocating coffee enemas, but very little of that rises to the level of “information” by my standards. Coffee enemas have been reported to cause proctocolitis, which could cause you a problem. Whenever someone is making claims about “detoxifying” anything, I think it’s best to find out exactly what toxins are of concern. If they can’t name the toxin then they are almost certainly spouting nonsense, and if they can name the toxin there’s still a... [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Soo many Gastros in my area do not even do Pouchoscopys!!!! Have you had this happen to you too?
FM Former Member
Former Member Great advice! I never knew that until today unfortunately. In my opinion, pouchoscopys are waaaay easier than colonoscopys, I guess I just gotta drive the hour long drive. I would rather it be done right than a botch job. [ more ]
girlunky Yes, well they do not usually deal with j pouch patients. I had two prior gastroenterologists and neither of them would be able to do it. Actually, I'd rather NOT have an inexperienced dr doing it. Fortunately for me I'm an hour from the hospital where I had the surgery. Even if it were further I'd travel. [ more ]
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J-Pouch ForumsGeneral Discussion
New J Pocuher
A Alyssamarie
kta I also had the three step - open surgery. At 6 months I was barely able to trust going away from the house. After that, things slowly got better and it took me a year to fully recover as well. [ more ]
ElmerFudd I was pretty sick and had a three step surgery. It took over a year, and a lot of experimenting with different things, for things to feel “normal” for me. Months of 20+ trips to the bathroom. Fiber and Prilosec helped me a lot in the end (pun intended 😀). [ more ]
Former Member So far its been almost 6 years and I am still learning about my pouch, you will start getting the hang of it in about close to a year. First few weeks for me was nothing but pain and taking it easy [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Alcohol
RondaCRondaC
Former Member 39 years???? Wow you must have been one of the first1?!?! lol Have you had any problems in the last 39 years?? [ more ]
ytcrockpot It doesn't take much Alcohol to go to your head when you have a j-pouch. I drink, a few a month. Ive come to realize that rum makes me ill, vodka is my choice of drink now [ more ]
Former Member Awesome! I hope it keeps up! It will be 6 years for me in October. [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
Post Takedown Questions
Jmitch39Jmitch39
sofi This thread is a bit old but Im interested, thanks to everyone who shared their experience, Im used to traveling, and considering travel after a month takedown overseas. I did a 1.5 month trip between surgery #1 and #2 (currently on loop #2) Ive been through a lot of bad times with all this and it would help me recharge to d another fun trip, before next semester at university I have some tough classes. But idk if its too soon for a trip that long. Guess we will have to see. I do heal super ... [ more ]
CTB23 I take Immodium once at night also (2 pills) and occasionally take Lomotil during the day, if I am taking a hike, bilking or will be gone for a while. The only other thing I use besides vitamins and some supplements is Benefiber in the morning with breakfast. I am almost 17 months post takedown and use the toilet typically 4-5 times a day, never at night, and no leakage at this point. Regarding the incision site, I had laparoscopic surgeries, so he just went through the stoma site, about 3/4... [ more ]
Jmitch39 Ok thank you for all the info! I’m allergic to Imodium but I do take 1-2 Lomotil a day right now with my ileostomy depending on my output. [ more ]
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J-Pouch ForumsGeneral Discussion
Cuffitis and surgery - help
ktakta
grandmaof1 What did you find out. I have the same problem with what they call cuffitis at my GI office. Or he has said UC in your cuff. I’m so miserable. I’d love to know what you found out please. Any information would be great. Thank you. [ more ]
kta Thank you, Scott. I remembered the mucous word, but googling it didn't help. We are dealing with pretty specialized stuff. [ more ]
Scott F The procedure is called a mucosectomy, and it removes the lining (“mucous layer”) from the cuff. It’s not risk-free, and does sometimes reduce continence, so you ought to have a frank conversation with the surgeon about the likely outcome and the risks. A more aggressive surgery for uncontrollable cuffitis combines mucosectomy with pouch advancement, which removes almost all of the rectal cuff and pulls the pouch up to the anal canal, where it is attached using a delicate and technically... [ more ]
See all 3 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

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

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