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J-Pouch ForumsGeneral Discussion
Some Blood in Urine
C capper
Pouchomarx For several years i have had non visual blood in my urine but microscopic. Urologist did a cystoscopy twice over a few years and found nothing suspicious in my urethra or bladder. so no idea [ more ]
SteveG In my experience pushing hard is of no use. Pushing normal is enough to empty the pouch (given that your stool is not too hard), which has a normal volume of only about 300 ml. That's not so much, especially if there is also gas, and it's less than the volume of a rectum at the end of the colon that we had before the pouch. I prefer to wait some time and lean forward, backward and to the sides, so that my small intestine keeps working and pushes some more stool forward into the pouch by... [ more ]
Scott F I used to take a shuttle bus into the Bronx; between the bad roads and bad suspension the story was that a number of the people on that route would develop blood in their urine after a couple of weeks. @capper I also try to empty my pouch pretty well, but I try to avoid pushing hard. Even though it has been okay for you so far it really can cause problems. Be gentle - it’s the only body you get. [ more ]
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J-Pouch ForumsGeneral Discussion
Liver & Entyvio
Y ytcrockpot
CTBarrister Unfortunately this can happen not only with Entyvio but other biologics and immunosuppressants. Both Imuran and Methotrexate messed with my liver chemistries and I had to go off both. It's unlikely you have any liver damage but be advised these liver enzyme issues are a risk with this entire class of drugs, that's why you go for blood tests. My standing order is for blood meds quarterly. Good luck with the hepatologist, hopefully no damage done. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pudendal Neuralgia- does anyone have experience with it?
S SurvivingUC
grandmaof1 Thank you for the support. I just feel like I can’t get a break. I have had problems with my jpouch from day one. But this pain and urge and spasms are absolutely unreal. I will always remember what my surgeon said. You need A or B and they both suck. U of M never went over anything before or after my surgery. Looking back what a mistake. I love this site!!! I got more answers here then even my own GI dr. I’ll post what I find out. Thanks again. [ more ]
SurvivingUC @grandmaof1 I am so sorry to hear what you are going through. Wishing you luck for a successful appointment and a pain free outcome. [ more ]
Sara Marie @grandmaof1 I'm so sorry to hear about your pain. I hope you find some relief ASAP. [ more ]
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J-Pouch ForumsGeneral Discussion
trouble with bananas
KeepMovinOnKeepMovinOn
dd I had a blockage from a banana. I use to be able to eat them often. But just recently had a terrible bout after I ate one. Your body is always changing and I might have had increased inflammation. Luckily Miralax helped work its way through. But since then I can’t even look at a banana without getting sick. Everyone’s condition is unique and I would assess more on a personalized basis [ more ]
New577 Interesting. Pre surgery, bananas gave me heartburn almost immediately, but cooked plantains were fine. these days, they still give me heartburn and I only can eat a small portion of plantains. if I eat fried chicken, jpouch gets very upset. So fried foods in general have to be taken in small amounts, or else. Another food I love on the no go list. [ more ]
LV2Hike Even though this is a very old post from 2015, and it's 2024 now, I was happy to find it when I googled "is bananas bad for Jpouch". I too have noticed over the years that I get worse after eating bananas especially if they are very ripe. Yesterday I ate a super ripe banana in the morning and had a terrible day with very little control, where I even had a little poop accident. Luckily I always wear a sanitary pad, prepared for those occasions. I don't know whether it's the higher sugar... [ more ]
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J-Pouch ForumsGeneral Discussion
Poor Calorie Absorption and Exercise
B BK 123
SwollenColon Stating the obvious here but you have to consume more food than you need to in order to gain weight. If you're maintaining your current weight with, for example, 1500 cal/day, then you'll have to bump that up to, say 1750 cal/day. You'll eventually gain a little weight, then plateau. At that point bump your intake up again to 2000 cal/day. Repeat the process until you hit your target weight, and you'll have to continue at this level of caloric intake to maintain that weight. Protein and fats... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Possible obstruction/impacted small intestine
N Nela
Hazel I’m not sure how a doctor can identify a mass in any intestine and know that ”it doesn’t require surgery” without a more thorough investigation. I hope that at this point your pain has gone away or that you have had the mass checked out. Hope you are better. Take care... [ more ]
Nela Thanks Scott, all the emerg doc said was there is a mass in the upper part of my small intestine that doesn’t require surgery at this time and to come back if my pain gets bad again. I know I should have asked for more information. I’m starting to get pain again as we speak because I did eat an egg, my first solid food in almost two days? [ more ]
Scott F What did the ED doc say about the mass in the upper bowel? That’s kind of important. It’s hard to reconcile the mass location with your frequency and urgency, unless the feeling of urgency has nothing to do with your pouch (just pressure elsewhere that you can’t relieve). If you treat this as a partial obstruction then you’d focus on staying hydrated and avoiding any solid food. You could try white grape juice, or MiraLax if you’re feeling adventuresome. Mostly patience - *if* it’s a partial... [ more ]
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J-Pouch ForumsGeneral Discussion
Excellent article on Special Concerns
F Frustrated
Hazel It’s been over 25 years - and I am still adjusting... [ more ]
New577 Thanks, great article; i am three years in with this thing, and I am still figuring things out. It is unfortunate that’s the GI docs and surgeons do not warn us as to what our lives will be like. Perhaps they are silent because some us would defer/reject the surgery if we knew then what we know today. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Please advise. What time to drink miralax prep w Gatorade mixed for a 2 pm ppuchoscopy and egd w else endoscopic mucosal resection
Len78Len78
Len78 amb, thanks and i want to ensure im cleaned thorougly so im doing 90 min pror to scheduled pick up to hospital adding 2 warm tap water enemas. i was aware about the split dose miralax th enight before and 5-6 1/2 hours the day of the scope prior. yes its a newer protocol they adopted to instruct folks for pouchoscopy to split the miralax thanks for the well wishes. scared as hell. i have polyps at the anastomosis that in october failed to lift despite being injected with methelyne blue. im... [ more ]
AMB I am sorry you didn't get responses from the FAP members. I don't have FAP, but I have annual scopes at Columbia with banding of mucosa and I've had inlet stenosis treated with balloon dilation also. No tap water enemas, just a Miralax and Gatorade prep each time. They've recently changed to a split dose prep, (1/2 at 6 pm day before and 1/2 at 6 -1/2 hrs before the procedure.) But when I am scheduled early in the morning I still do a single dose starting around 6 pm the night before. Also,... [ more ]
Len78 after doing alot of investigating online/my own research i found its best to administer both tap water enemas one after the other atleast 90 minutes prior to leaving for the scope. the arrival time is set for 1pm around 11 am on the 28th of feb i plan to administer the water tap enemas one after the other after having miralax with gatorade clear cherry flavor around 6-7pm the night before pouchoscopy day i always have gotten standard gi prep instructions as if im going for a colonoscopy but... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
1st period after over a year - Just symptoms or actual pouchitis?
sfgiantsjosfgiantsjo
Sara Marie I have always had irritation of the pouch/anal area with my cycle. Now that I don't have the periods anymore, I still get cycles, meaning there will be a PMS-like time and there may be lower back ache, digestive disturbance, and soreness in the anal area and if they go on too long, there can also be increased inflammation in the pouch which leads to night time leakage. When I have PMS-symptoms, I take "Peacekeeper" from "Herbalogic." It clears those symptoms up, plus decreases irritability... [ more ]
JPouch2017 I would call your doc for a prescription especially knowing you’re about to go on a cruise! I’ve never had pouch symptoms as a result of My menstrual cycle. I’ve had pouchitis, and I’ve had bad periods, and while they share the commonality of “cramping” it’s a different cramping. You know your body, if this feels different than symptoms from a period, I would get a prescription ASAP so it doesn’t ruin your trip. My doc Doesn’t require a scope to write a once in a blue moon prescription for a... [ more ]
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J-Pouch ForumsGeneral Discussion
Questions from new J-Poucher
D Dave23
Kangaroo Imodium helped me tremendously with leakage and accidents while sleeping. I took 8 pills per day for the first year. Now, 8 years later, I just take 2 before bed to slow things down and prevent accidents. [ more ]
Matt R It's been 20 years, but I remember the beginning being like you describe. I took a lot of imodium/loperamide initially. The best trick I learned was to not drink while you're eating. After that last bite of a meal, you can immediately drink something, but just not in between bites. I remember my surgeon telling me that leaking at night every so often was normal ... but he told me that after the surgery. Knowing that beforehand wouldn't have changed my decision, but I wish I would have been... [ more ]
LoveLife Hi there. Besides what the others have written you could consider how late you eat and drink, and experiment a bit with what foods makes you leak more. It takes a while to get to know your new gut and how your eating habits influence your system [ more ]
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J-Pouch ForumsGeneral Discussion
Increased BMs followed by Constipation
I Ike18
Mrs P Ugh. I’m sorry you’re having these issues. I feel like pouchitis can rear it’s ugly head quickly so the fact that your pouch looked good 30 days ago isn’t saying much to me. For me, I know I have a stricture which causes difficulty “going”, which cause gas, which causes pain and gurgling. Which can then lead to pouchitis. My doc usually suggests Canasa suppositories. The use of them can help to “open up” the area and also reduce any inflammation. I hope you’re feeling better soon [ more ]
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J-Pouch ForumsMen's Health
J-pouch and prostate cancer
J jdhalf
Former Member Glad your okay [ more ]
MikeEJ34 Thanks for the update! Not getting ahead of yourself and worrying is absolutely way easier said than done, but it’s still a true statement and one I hope you can manage to accomplish! 😊 We’ll certainly be praying for you! We look forward to your next update! God bless! ❤️ [ more ]
Pouchomarx Had my appt friday. PSA is now 2.78, and FREE PSA was 30% which is considered abnormal with Cleveland Clinics chart of 2.6. My urologist stated lets get PSA again in 6 weeks and if its any higher he could order a prostate MRI so we can see if anything looks suspicious. If anything is there and PSA goes up then consider doing a biopsy. He knows about my jpouch and cant do biopsy the normal way so said he doesnt do the biopsy but the interventional radiologists do them transuretheral. Actually... [ more ]
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J-Pouch ForumsGeneral Discussion
Crocin as a supplement?
L LoveLife
Sara Marie What have you been reading? I'm always curious about supplements that might help. I'm interested in trying this if others have found it helpful somehow. I googled it and found mostly articles on saffron and brain damage. Here's a place you can get it as a supplement: https://nootropicsdepot.com/hi...GMsQaURoCU-8QAvD_BwE [ more ]
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J-Pouch ForumsGeneral Discussion
Activated Charcoal- yay or nay?
SpookySpooky
Chook2 I found it helped me alot yesterday ,did a huge bowel movement.ginger ale and activated charcoal may calm the stomach goblins but more research needed. [ more ]
skn69 Hi Spooky, My dad was old-school and used to burn toast for me to eat when I was a kid and had bloody stools...I hated it but it helped a lot. Slowed things down substantially...But it took a couple of days to work (and caused black output...Beware!) When I moved over here, my GP was also a naturopath. She put me on activated charcoal for 1 month when my gallbladder/liver acted up the first time over 30yrs ago...it was better than burnt toast and did help with both the gas and the 'whatever... [ more ]
Spooky Thanks again, Jan. Getting older is fun I have been lucky overall. The last time I was on a course of cipro/Flagyl was 6 years ago, so in that case my GP will probably be reluctant to prescribe anything, just based on my past experiences with her. Plus the cipro in particular really slowed down my motility, which I always worry about since I have had partial obstructions related to adhesions. The last thing I want is to get bunged up. I will see what my GP suggests. 13+ years with the pouch... [ more ]
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J-Pouch ForumsGeneral Discussion
Ginger Ale
C Chook2
CTBarrister It was Canada Dry that saved me in Montreal! Not a surprise I guess, because I was actually in Canada, that it was the house brand rather than Schweppes! [ more ]
RossG I totally agree on the ginger ale. Prefer Canada Dry vs. Schweppes. [ more ]
CTBarrister Ginger Ale has long been a go-to for me as a remedy for gastrointestinal distress when Pepto Bismol is not readily available. I recall very vividly in October 2014 I travelled to Montreal with a group of friends. At the hotel bar, I ordered and consumed, for the first time in my life, steak tartare. It's essentially raw steak prepared with a pepper sauce. Within 45 minutes, I was feeling extremely ill and nauseous. I excused myself and went to the men's room, where I was certain I would... [ more ]
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J-Pouch ForumsHelp! Need advice now!
What time to give myself first tap water enema when my pouchoscopy is for 2pm start time with a 1pm arrival to the hospital
Len78Len78
Len78 hi jaypea thanks for your response. i will consider following your advice and use it as a guideline. i can do my 1st enema at 11am, my pick up/transportation to deliver me to hospital on pouchoscopy day is 12;15pm. i'll administer the 1st one slightly earlier so i dont feel the urge to expell while riding 15 minutes in the car to the hospital ive never dealt with or had experience with afternoon scopes in my 22 years of j-pouching a but nervous. former gi had me do miralax everytime. i... [ more ]
Jaypea My last pouchoscopy required 2 fleet enemas. One was 2 hours prior to the procedure and the last one an hour prior. I had to leave the house more than an hour prior so I did it just before I left. Surgeon said everything was great and had a good view. [ more ]
roseviolet Miralax is overkill in my opinion. I've had regular & interventional pouchoscopies. Was instructed to have a clear diet the day before and to use a tap water enema before leaving for my appointments, some of which were in the afternoon. You'll never be able to get the pouch perfectly clean, as it starts accumulating waste/mucus immediately. My doctors always said my prep was fine. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Diabetes type 2and ulcers stomach and duodenum Gatorade and other acidified drinks a no no
Len78Len78
Len78 hello jaypea, ive had a history of gerd and was treated for years with either nexium, prevacid, omeoprazole, and after years of having beeing told to stop one of those drugs (and having had acute kidney failure/renal injury) in june 2019, the hospital dr took me off nexium, so was last on it in my late 30;s in october of 23 of was prescribed pantoprazole by the attending physician of my care following hospitalization after delayed rectal bleeding from endoscopic mucosal resection (endoscopy)... [ more ]
Jaypea Have you been tested and treated for H Pylori? Not sure why Gatorade is contraindicated for ulcers unless it exacerbates your GERD. You could try Pedialyte. It is a clear fluid and comes flavoured. We use it in peds all the time for hydration and fluid challenges. [ more ]
Len78 Gerd not gets ive got gerd and the two ulcers peptic as described [ more ]
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J-Pouch ForumsHelp! Need advice now!
MR Enterography with a J-Pouch
R R.D.
R.D. Thank you for your reply. Yes, it does help to know your experience and gives me assurance that I could survive it and hopefully get the correct treatment. [ more ]
Ellie S I had one last May and it was a piece of cake. I did have to use the bathroom a lot while drinking the contrast. They wanted to look to see if I had anything going on with my small intestine. I think the test shows thickening of the lining and tells them if there is anything else going on. I recommend wearing a pad if you have trouble holding like I was having at the time. The staff also said they could take a break and let me use the bathroom if I had too. Both were unnecessary. I am not... [ more ]
R.D. I read everything. Thank you for helping me understand and I will ask my doctor about the treatments. You are very helpful. [ more ]
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J-Pouch ForumsGeneral Discussion
Acute Pouchitis - Is Treatment Needed?
I Ike18
Scott F If you do try a laxative (I’d try a fluid diet first) then MiraLax is the usual one suggested for J-pouchers. [ more ]
SteveG If it is a partial obstruction at the old stoma site you could try a laxative or some days with fluids only (no solid food). [ more ]
Ike18 Thank you for the insights. I may see if it subsides in the coming weeks, if not schedule something with the doctor. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
RV fistula?
P Pluot
colitisfree @Pluot @vstRN Hi, I am also using Cornell and think I have a RV Fistula, scheduled for pouchoscopy tomorrow. Can you please update me on how things went for you? Thanks a lot [ more ]
Pluot Oh, me too! I used to see Scherl weekly. I was just saying today that this is the first time since I became her patient that I haven't had a future visit on the books with her, touch wood. Good luck with takedown! It is time for some good luck for you for sure :-) Hehe, I was in a makeshift double on 14 after Step 1. I can't believe they are still doing that! I felt so bad for my roommate, she had to use one of those old fashioned bells like at a hotel front desk because her side of the room... [ more ]
vstRN Oh so funny. I'm sure we have crossed paths - I was practically living there for a while! And I love Dr. Michelassi - I saw him once for a consult and he is charming! Yeah, I am still diverted while everything heals which is actually a good thing for now (although I looooooathe this loop ileostomy). If everything goes as planned, I should be doing a 2nd takedown in June and will hopefully be done with all this for good. It has not been the best year and a half to say the least... But since... [ more ]
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J-Pouch ForumsGeneral Discussion
Hemorrhoids after j pouch
C C.S.
C.S. Thanks for the info [ more ]
Scott F I’ve had the occasional hemorrhoid, and for me they tend to clear up on their own. I find my bidet to be vastly better than toilet paper. Straining on the toilet tends to cause (and exacerbate) hemorrhoids, so anything you can do to minimize that will help - keeping the stool soft is important. If they get severe then sitz baths can help. [ more ]
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J-Pouch ForumsGeneral Discussion
Rv fistula
MillertimeMillertime
colitisfree @Millertime I had some leakage recently and figured its a RV Fistula, then saw pus coming out so my surgeon prescribed Augmentin and it got much better. I am scheduled for a pouchoscopy this week, he said if he feels that it needs to be repaired he will do the flap procedure to close it off. I did some research and spoke to other j pouchers who told me to try to wait as once you do 1 repair, the second one is more complicated. I will have a conversation with my GI tomorrow and surgeon before... [ more ]
Scott F It looks like the poppy seed test will work well on a recto-vesical fistula, but I think it will work less well (if at all) for a recto-vaginal fistula. They both have the same abbreviation, unfortunately. [ more ]
Millertime Ty [ more ]
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J-Pouch ForumsHelp! Need advice now!
Leakage during sex
T tulsamom
tulsamom Thank you so much for your input. [ more ]
CJCowdell Bear with me here: I found that taking 1Tbsp psyllium husk, mixed in water, before every meal, stops the anal acid burn (bile acids) better than the medications WelChol or cholesteramine (for me). If my anus was acid burnt, the bidét cold water burned & really hurt. I went through hell for a few weeks with crazy burnt anal pain. Just tapping the anus dry, after the bidét with TP would leave slight tinge of blood. Luckily the cheap amazon (under toilet cold water) bidet works great now,... [ more ]
SteveG Just wanted to add that we are talking about a bidet attachment for the existing toilet, not a stand-alone bidet, to keep it inexpensive. There are simple attachments to fix below the toilet seat or integrated ones that replace the toilet seat. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
cancer, hysterectomy, j pouch?
O OscarThePouch
Vickie Losing your hair depends on the chemo drug. Some may thin your hair without losing it. I thought losing my hair would be the worst, but it wasn’t as bad as I thought. I was referred to a beautician, that was also a cancer survivor. She fixed me up with a wig that was similar to my own hair/style and trimmed it to fit my style. Around home, I just wore a baseball cap. [ more ]
OscarThePouch I dont know why the hair loss thing is so gut wrenching to me. Ive never felt like a beautiful person and was bullied my whole life. My hair is long, thick, and wavy and its the only thing i like about my appearance and to imagine it all falling out makes me want to puke. [ more ]
Vickie I was diagnosed with UC when I was 41, had s-pouch surgery at 43. Diagnosed with ovarian cancer at 55. I am now 66 y.o. I had surgery and chemo. It was caught early. My family on both sides has history of UC ( mom and paternal cousin) and breast cancer on both sides, so don’t know if all the steroids I took for UC were a factor. My UC was diagnosed before all the new biologicals were available. I had 4 rounds of chemo, I was a little more constipated than I was used to. Side effects were... [ more ]
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J-Pouch ForumsGeneral Discussion
SSRI Anti Depressants?
temotytemoty
Sara Marie There is a Chinese herbal formula I take that helps with this. It is made by "Herbalogic" and it is called "Decompress" and is formulated for depression/anxiety. The effects are subtle but noticeable for me. I have been using acupuncture and Chinese herbs to support my hugely imbalanced body due to having no colon and this has been more successful than anything western medicine has offered as of yet, though I keep checking to see what they have come up with. None of it has been for me yet,... [ more ]
SeattleJane Ack! I wish. I do not know why, probably due to the brain gut connection of my unique physiology, but I am not able to tolerate SSRIs. I have tried them all and even at the smallest fraction of a micro-dose they cause level 10 out of 10 diarrhea. Bah humbug! When I was younger, pre-j-pouch days, I became severely depressed after a miscarriage and Zoloft was the miracle cure. Depression still shows up at my door from time to time and I wish an SSRI was still an option for me to kick it to the... [ more ]
Sara Marie My overall (including GI) health got better when I started taking Chinese herbal formulas that support mental health (for depression/anxiety, monkey mind). [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch surgery
N Nancydiane
Nancydiane No watchful waiting really isn't an option for me they offered me the choice to wait 6 months and repeat specialized colonoscopy but they also said it would be rolling the dice and I didn't like that option plus the worry and the stress of wondering if I waited too long would have been more stressful than moving ahead thank you for your opinion and I will get through this as most everyone on this site has pointed out. It's very encouraging to hear that you have had it for a long time and it... [ more ]
SeattleJane Hi @Nancydiane , I had jpouch surgery 19 years ago due to advanced polyposis and I'm doing reasonably okay. I relied on this group of folks for advice and just to vent. You have all of us here to support you no matter what you decide. I do appreciate @CTBarrister 's questions about surveillance as a possible strategy. Maybe or maybe not. My new, young-ish G/I doc told me at our first meeting that she was sorry I had this happen so long ago because current practice with benign polyps (I had... [ more ]
Nancydiane Thanks [ more ]
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J-Pouch ForumsGeneral Discussion
Travelling
J Jeh
SeattleJane I had similar issues to those mentioned already, except a bit worse due to my original surgery not being successful, and needing a second surgery 4 weeks later. They had expected to discharge me 2 days after the first surgery, but when it became clear there were complications, I was on a PICC line for tube fed nutrition for a month before the follow up surgery and an additional month afterwards. No fun, but exceedingly unusual. It is much more likely all will go well, with normal post... [ more ]
Jaypea While it would be lovely to recuperate in Spain, travel is stressful and requires a great deal of energy. To say nothing of sitting for long periods and lots of walking in airports. Three weeks post take-down is still early in your recovery. It took 2 weeks post surgery for my bowel to start working properly again so was not discharged until about day 17 post-op. My diet was extremely limited as I was learning how my pouch functioned and I did not risk being more than a few steps away from a... [ more ]
New577 You will need to see how you are feeling after your post surgical follow-ups. on the 10th day after takedown, my staples were removed, and that evening my undetected fistula began to leak. It was a real sh** show, resulting in emergency surgery in the middle of the night. Please be careful and listen to your surgeon’s recommendations. [ more ]
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J-Pouch ForumsGeneral Discussion
Second pouch
K Kushami
Winterberry Kushami, I’m sorry that you experience cognitive difficulty, especially during medical appointments and trying to remember what was discussed. I have a family member with early dementia so I know a little of what you’re talking about. Tty this for your next medical appointment: get a small notebook and write down any questions you have, and all the answers they give you. If you can’t write down their complicated medical terminology, give them the notebook and ask them to write it for you. [ more ]
Kushami Just out of interest, or for anyone else wondering the same thing as me, here is some information from a paper by Remzi et al in 2015: Preoperative Evaluation Patients underwent a comprehensive clinical examination before redo IPAA surgery. Although perioperative evaluation has evolved through the years, in all cases, there was an accurate and detailed history of the presenting symptoms and the prior pouch surgery. For patients referred to us, this included both operative records and... [ more ]
Kushami Good for you, @New577 . The two surgeons I saw failed to impress me, so I doubt I will be going back regardless. They both showed signs of poor communication skills. If they had been able to give me a reason, such as double checking for Crohn’s, and had done a better job at the consultation, that would have been a different story. As each surgeon wants to look for themselves (fair enough), I won’t bother to get into a pouchoscopy with someone I don’t like for the surgery anyway. [ more ]
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J-Pouch ForumsGeneral Discussion
alternatives to Ilex
N NathanG
ken31cay I just did a post with my results/opinions of some products I've recently tested: https://www.j-pouch.org/topic/...ch-results#lastReply [ more ]
ken31cay @ NathanG : note that there are several Coloplast skin barrier products. The "Thick Moisture Barrier Paste" product is the one I think might show some promise. I've tried another Coloplast product and it was garbage. [ more ]
ken31cay Yeah iLex is perfect. I'll post when I find a 'best alternative' out of the products I will be testing soon. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Loop ileostomy takedown
S shayulajiao
Grace S I see, yes it’s good to communicate those things and ensure as much as you can that you’ll be comfortable and taken care of for recovery. Best wishes to you! [ more ]
shayulajiao Hi Grace, I really appreciate your reply. And it is great to hear your j pouch works fine for so many years. Hopefully mine will be as good as yours. I guess I need to ask nurse change my pads under me more frequently. Based on the ileostomy experience, I have lots of loose outputs while I am having meal. I have to empty my ostomy bags right after finishing each of my meal. Thanks again for your reply. I am more confident for the new life now. [ more ]
Grace S Hi shayulajiao, I had a take-down surgery about 16 years ago, so my memory is a bit fuzzy, but I don't think you have anything to worry about for when you wake up . Usually you've got pain meds going through you from the IV, and I believe I had a urinary catheter, pads under me for any accidents, etc. I don't remember having any issues other than some abdominal pain when first getting in and out of the bed during recovery due to the incision. I'm sure your doctor and nurses will also inform... [ more ]
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J-Pouch ForumsPouchitis
Entyvio Time
PouchboyPouchboy
marz I have been On entivyo for 3 yrs. (Every 2 months) I don’t know my inflammation levels, but the blood test did show the antibodies for entivyo were showing.Previously, I was on the antibiotic rotation and ended up with c—diff. I’m happy with the entivyo and have not been offered the injections. Just wondered if insurance coverage is as good for injections vs infusions (Medicare). Has anyone had experience with their insurance coverage not being as good?? [ more ]
sudie I have been on Entivyo monthly for two years was previously on antibiotics for quite some time. Last month changed to injections every two weeks. I do it myself in the top of my leg so much better quick easy. My gastro doctor feels I would get a better coverage through the month .My inflammation levels were very high at the start toward the 500 mark now down to below 100 so happy with my progress. [ more ]
gnnelson ❤️
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J-Pouch ForumsHelp! Need advice now!
If J-Pouch failed, is pouch removal a must? J-Poucher from China
J Jiajun
Mysticobra Get well. Heal well. It's a tough surgery to go through. I've done it. It only gets better now. Richard. [ more ]
Scott F It sounds like you’re well on your way to a complete recovery, @Jiajun . I hope you can soon look back on this as a temporary nuisance. [ more ]
Jiajun Update I just had my pouch removed on Wednesday. Prior to the operatioon, the surgeon did a pouch endoscopy , My diversion pouch's condition was very poor, severe inflammtion alone wiith a lot of ulcers inside it. Its the time to get rid of it. My surgery lasted around 5 hours. In terms of the senior surgeon who performed the surgery described, my intestine adhesion like a pan cake, its extreme diffcult to release . Fortunately, they did it. They opend me up and took my pouch out from my... [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Partial Obstruction and COLUMBIA
JS Jersey Shore
AMB How did you end up handling it? I'm a patient of Dr. Shen but live several hours away. After a partial obstruction with poor care in my local hospital (wrong meds offered, no discharge diet instructions leading to prolonged symptoms and delayed resolution,) I followed up with his office for guidance. I was given the correct protocol for re-introducing solid foods and told: if it happens again, get someone to drive you to the Columbia-Presbyterian ER. Now that I recognize what the symptoms... [ more ]
See 1 reply...
J-Pouch ForumsWomen's Health & Pregnancy
anyone had ovarian cysts removed?
O OscarThePouch
susbo Hi there! I had a 5 cm cyst and my surgeon had to take my ovary. Luckily, no long lasting effects on my pouch. It was definitely a more complicated surgery because of the pouch scar tissue… I had a choice as to whether I wanted my surgeon to attempt it laparoscopically, but I opted for open and am glad I did so, because she would’ve had to abandon that route if she had tried and open me up anyway. I had asked for a colorectal surgeon to be present, was ignored, and then later my (gyn-onc)... [ more ]
See 1 reply...
J-Pouch ForumsFAP Forum
Whipple with J-Pouch
S Shamrocksue60
Len78 im surprised your dr wants to operate on you with only low grade dysplasia and not high grade present i have low grade stomach dysplasia with a normal no polyped ampulla i have fap, im 45 with a single stage jpouch constructed on october 15 2001, so the jpouch is 22 im being followed at a cancer institution/hospital locally by an interventional gastroenterologist. we are watching me and i see a surgical oncoligist at u of p downtown philly. i would question this dr why he wants to operate... [ more ]
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J-Pouch ForumsGeneral Discussion
Why do peanuts make my butt itch? (Weird problem with peanuts)
melissa111melissa111
Sara Marie I think the answer to your questions is YES! My butt gets itchy and irritated frequently and I haven't always established a direct correlation between that exact kind of irritation and which exact foods, but nuts are definitely one to watch out for. It'd difficult since things take a while to digest, sometimes they irritate and sometimes they don't (depending on what else is going on in the gut), and sometimes it's a combination of different foods, like eating them too close together, or... [ more ]
CTBarrister It doesn't happen to me. And it also doesn't make sense how peanut butter is OK for you, yet peanuts chewed into a "very fine paste" are not. In my mind it does not spell allergy. But your perianal skin is probably very sensitive to any kind of irritation- even from fine nut granules. [ more ]
melissa111 That's what's so weird about it. It really seems like the kind of thing that would happen from an allergy because when it does happen, my butt gets red and severely inflamed and VERY bad pain. Like, it was bad enough that I had to stay in bed all day, once after I'd eaten a big jar of peanuts the day before. Another time it happened, I was seriously considering leaving work early. It's that bad. It's even worse than when I eat extremely spicy food with nothing to buffer it. People keep... [ more ]
See all 22 replies...
J-Pouch ForumsGeneral Discussion
Pouchoscopy - Biopsy
I Ike18
Scott F I see no whisper in the results you quoted of cancer, pre-cancer, or cancer that’s even thinking about it. [ more ]
Ike18 Thanks for your input Scott.....much appreciated. it was my routine 2yr pouchoscopy. I haven't really had any material symptom changes recently, but who knows what is going on down there?! I know you're not a doctor (or maybe you are!) - but would anything on there give you cancerous/pre-cancerous concerns? Always gives me anxiety waiting on the pathology returns, which is now extended due to doctor's vacation. [ more ]
Scott F You don’t say whether this was a routine pouchoscopy or one done to help evaluate a problem. It’s common for a reasonably healthy J-pouch to show mild inflammation, but your report suggests more inflammation than that, in severity, ulceration, and deeper inflammation than the mucosa. I’d guess your doctor will probably recommend some medication additions or changes. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Ilex and vitamins
G grateful
grateful I totally agree. What a disappointment!!! i don’t get it. It was the only ointment that work for me too. Hang in there Pouchomarx. [ more ]
Pouchomarx pretty sure Ilex is gone. They lied to their customers for several months saying they were having issues getting an ingredient but would be back in early 2024. Well they stopped answers emails about 4 months ago and their phone numbers in USA and UK no longer work.. this is BS. Only barrier cream i could find that actually dried and wasnt a goopy wet slippery mess. [ more ]
Sara Marie ❤️
See all 5 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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