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J-Pouch ForumsHelp! Need advice now!
J-Pouch Revision Surgery
C Crazyred
Former Member I think I found a couple of sites, I hope these help you out. Let me know if you would like more https://nyulangone.org/news/re...atient-pouch-failure https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4882179/ *Dr. Feza Remzi has Youtube videos on Youtube that talks a lot about Revision surgery as well* I would go on his website too. He is an amazing guy [ more ]
Former Member Did they say why they think you need in a redo? What needs to be redone? Maybe your surgeon thinks you need advancement surgery? [ more ]
Scott F There’s a fair amount of information *here* about J-pouch revisions, so using the search function might answer the questions you have. If I needed it I would choose a different surgeon than the one who created the problematic pouch. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Distended abdomen
GSGS
Former Member I have had a distended abdomen for about 11 years now. Everything is fine with me, I have been checked out many times and there is no known cause with it for me personally. I would suggest getting checked out if you are worried about it. Keep us updated and Happy New Year Dear [ more ]
Scott F This doesn’t sound like pouchitis to me. Have you noticed being more gassy during/after the distention episodes? If it’s gas we can talk about things to try to reduce that (e.g. Beano, SIBO treatment, etc.). Another possibility is frequent partial obstructions, which fits with the distention and discomfort. Obstructions can be tricky, but you might get relief from switching to a liquid-only diet at the first sign of trouble. You can also try increasing your water intake in general, which can... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Polyp Removal and Lots of Pain/Spasms
ktakta
Former Member Definitely sounds like the rectal cuff. Thank goodness the doctor got it out! I am sorry you had to go through this pain, I think it should feel better soon, if not, definitely contact the doctor. Keep us updated And Happy New Year Dear [ more ]
Scott F The rectal cuff is pretty sensitive, and it sounds like that may be where this thing was. It should start to feel better soon. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Going from Jpouch back to Ileostomy
M Mpale033
SteveG Hi Danny, gas all night long sounds like bacteria overgrowth. Do you have no relief from antibiotics (Cipro & Flagyl together always helped me)? Several years ago I had a couple of weeks where I woke up every hour at night with slight stomache ache (but too much to sleep again) and I had to get up and move a bit until I felt better. So I know how exhausting that can be. Remission is also a foreign word for me by the way. But whatever happens, the most important thing is never to lose... [ more ]
fisherdan I would never agree to a loop! That was the most horrible time ever! Changing an appliance and it not immediately leaking was almost impossible! My skin was constant blisters all around and no chance for healing due to leakage! I have like 4 or 5 inches left from large intestine in rectum that I expect will be removed! I totally dread waking up from that surgery because my 3 surgeries were not fun! But for me not having to go through 3 pads every night and 3 under wear and clean the over... [ more ]
SteveG Hi Danny, your issues are even harder than mine. I don't have cramps or too much gas. I can ease my chronic pouchitis with budesonide, and once a month I take antibiotics for about one week (which has the best effect and reduces gas as well as any smell). My former meds include Remicade, Entyvio, Aza and Stelara. Now I'll try Adalimumab as a second TNF-alpha blocker. My permanent inflammation in the pouch and the ileum terminale has been diagnosed to be similar to Crohn's at the last scope,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Constipation?
L LIGuy11
LIGuy11 So, I ended up having Covid and the constipation issue is still ongoing. I went to my colorectal surgeon’s office where they did an in-office exam/scope and said I have some inflammation and would treat me for pouchitis, so they get me mesalamine suppositories. I thought with inflammation you’d have the opposite of constipation but I guess not. I took my 3rd suppository tonight but nothing is better yet. I guess it takes time. The doctor couldn’t confirm that this was caused by Covid, but... [ more ]
Former Member Peppermint tea helps alot.with ginger it biscuits and no more constipation but big clear out [ more ]
Former Member LIGUY11: I hear Squatty Potty works well too [ more ]
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J-Pouch ForumsHelp! Need advice now!
Difficulty, painful emptying - Stricture? Hemorrhoid?
S Sunflower70
PATRIZIA Dear all, My pouch was good for almost 19 years, though the last few years I noticed the need to start putting pressure in order to empty, which caused swollen hémorroïdes internal and external. And also twice flebitis in my right leg, none of the doctors would recognise the link between putting pressure to evacuate the jpouch and swollen uncomfortable veins in the leg. I was told to drink a little amount of olive oil (2 table spoons) on empty stomach which did help then I started having to... [ more ]
kta I panic too. We have been through a lot and it is hard to think about more. So sorry for your problems. [ more ]
Former Member Glad you are doing better [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch Decision
P PureSuspect
kta I had my pouch done in 2004 as well. It has its ups and downs, but usually is not so horrid I want it gone. I have been on antibiotics for 14 years straight - it is the only way the pouchitis stays away. I take Augmentin, Cipro and Xifaxan - rotating each for 2 weeks. It works well. I am also now on Humira and that has helped a lot. Definitely talk to as many docs as you can. I say that and I am avoidant in reaching out to docs; I need to follow my own advice. I hope all goes well. [ more ]
Former Member I sent you a private message [ more ]
PureSuspect Hi All, I really appreciate your feedback. I emailed my GI doc to see if she can switch me over to Remicade to see if that helps. Antibiotics help while I am on them but as soon as I am off the course (usually 10 days), it gets right back to the way it was. I tolerate Cipro much better than Flagyl. What my Kaiser CR surgeon said was that he could attempt to remove the structured area but there is a high risk of losing the pouch. He also mentioned that he could not remove the pouch and create... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch help
KV Kathy V
Linzalisha So sorry for your husband must be horrific. Flagyl and prednisone both oral and suppositories may help and remicade. They all helped me and my 31 year old pouch. Good luck. I really hope he gets the relief you both deserve to be happy. 💕💕💕💕💕 [ more ]
Former Member I am sorry dear!!! Has your husband tried Mesalamine suppositories/ enemas??? Or Biologics??? [ more ]
Bobster I think both responses are excellent. I will also say that I have been on many courses of Prednisone and Entocort for flare ups over the years. Entocort worked just as well as Prednisone for me and with less side effects and has worked rapidly (24-48 hours). [ more ]
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J-Pouch ForumsHelp! Need advice now!
Can't pass gas I'm in pain
A Andreita
Mary F I am so sorry you are in such pain, and it sounds like you took medication appropriately. Pain is a warning sign that something is wrong and needs to be addressed. The pain you are experiencing may be due to more than just gas. What does your health provider say? I was having horrific pain which turned out to be a stricture of my J-pouch, which needed to be treated surgically. You have probably already tried, but a heating pad, and physical activity/exercise like sit-ups have helped me when... [ more ]
Former Member I am sorry to hear that Andrina! I get symptoms like that if I overeat 2 days in a row; when I get like that, I take two bottles of Magnesium Citrate and it works miracles, all the pain is taken care of within a couple hours along with the constipation being gone. After I get fully cleaned out by the two bottles, I stay on a liquid diet the next day for bowel rest. [ more ]
Andreita @Scott F the juice helped thank you so much @Jaydog I will also keep trying your suggestion thank you so much Appreciate you guys [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pelvic floor dysfunction
MIKEEYMIKEEY
MIKEEY Robb-I did get your message this morning. I think I told you I went to Cleveland many years ago and saw Dr Shen , had problems with J pouch, but he did not help me. Robb, I am very positive the exercises and other things as you say a bit embarassing is all the same as you got, I know they did quite a few tests and think eventually it will help me, I pray. I thank you for all your help, and I will keep in touch as I wish you will, I live upper West side in NYC, so I won't take public... [ more ]
MIKEEY Robb77- I sent you a private message yesterday just wonder if you ever received it? [ more ]
Former Member Hey, I was off my computer, sorry for the delay. I got your response, I responded back [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stress and feelings of constipation
A AliceMay
Former Member We can definitely get constipated!!! I get constipated if I overeat 2 days in a row. I think you should drink 2 bottles of Magnesium Citrate, that will clean you out perfectly. The following day, maybe stay on a liquid diet just for that day to give your bowels some rest. I agree with doing exercise; but Stress absolutely can cause constipation among other things. When I am feeling down, I say out loud the things that I am grateful for and that brings me up, try that [ more ]
AliceMay Thanks for the quick reply Scott! I don’t think my fluid intake is as good as it should be, I’ll improve my consumption and see if that helps. Alice [ more ]
Scott F Based on reports here it sure seems like we can get constipated. I don’t think stress would be a likely direct cause, but if anything (including stress) reduces your fluid consumption then that could be a factor. Have you been getting enough fluid, do you think? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Inflammation
BA Bill A
Former Member You are welcome. I think you should talk about your concerns with the doctors. [ more ]
Bill A Thanks They believed it to be UC 4 years later determined it to be Crohns. I have had infusions for it since. I have still had episodes of inflammation for 20 years, Arm pits and rib gage as well as back. I am unsure its the intestines or stomach. Would love to know how to treat [ more ]
Kangaroo I found following a paleo diet helped with inflammation. I hope you feel better. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Prostate Cancer Cures and J-Pouch
N Nick10136
mike1941 Nick j pouch since 1984. Prostate cancer diagnosed in April 2007. Radical prostectomy completed in June 2007. Original j pouch completed at Mayo in Rochester Minn. I decided to return to Mayo for the prostate surgery since they understand the proximity issues with the j pouch. All went well regarding both the prostate removal, and preventing any issues with the j pouch. I am currently 73 years old. you might consider a similar strategy, as part of your options by utilizing the institute that... [ more ]
CTBarrister I agree with everything Winterberry wrote above. Good luck Nick. [ more ]
Winterberry Hi, Nick. I remember when you first posted on this site a few years ago and how you moved from asking lots of questions in order to learn about your upcoming j pouch surgery, and then coming though that surgery to recovery. I am sorry to hear about your current diagnosis. It is serious and you are right to approach it calmly and thoroughly, and to keep moving forward with medical appointments. Wait to see if anyone here with actual experience with prostate cancer will come across this post... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Sore Rectum
Funky26Funky26
Former Member Yeah, that totally makes sense!!!! I am happy to hear you are doing better!!! I hope it gets perfect for you Let me know how everything goes [ more ]
Kmiller I've been healing up from cuffitis, which caused me to have a very sore rectum. Dr prescribed canasa suppositories. Its getting better, slowly [ more ]
Former Member Oh sorry! I misread it XD I do not know much about pouchitis, everything I have heard about it sounds painful and serious. I think you should get checked out, sounds a lot like cuffitis. Have you had cuffitis before??? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Will an ileostomy give me relief ?
F fisherdan
fisherdan i will read up on it! honestly, i have never went on a special diet! My stomach seems to have a mind of its own and anything can get it upset! i don't remember when it hasn't been upset! [ more ]
RHolt Hi Danny, you might want to try the Low FODMAP diet. It could significantly change your gut picture. I switched over to it and also now take Dysbiocide and FC-Cidal, herbal supplements that seem to knock down the bad bacteria that gets our guts angry. I have good results with these 2 changes in my life. [ more ]
fisherdan I got the GI to send out an antibiotic and I finished as of last night, my ten day supply! This one worked, as far as all the foamy soapy look left my stool and most often the stool looked separated between clear water and stool! I have had diarrhea for 30 years! Stomach still is very loud and active! It stays angry all the time! I was diagnosed about 3 months or less with AFIB, so I am now on Lopressor and Eliquis! Gaining weight though I am trying to cut back night time snacking! My... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-pouch and dehydration
C Crystal<3
Former Member ❤️
Former Member Try drinking water: before, during, and every meal- that helps me stay hydrated. [ more ]
Spooky Boy's mom, I don't make my own vegetable cocktail. It's generally store bought.I actually prefer the lower sodium varieties, as they tend to be higher in potassium. I'm in Canada so we probably have different brands, but I prefer Allens and Oasis over V8 and Garden Cocktail. Also, if you are concerned about your son getting enough vegetables, pureed soups are always a good option. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anal/vaginal Fistula
P pammieskrh
K_InTheFlo @pammieskrh How is it going? Who did your procedure? [ more ]
JHendrix I'm sorry to hear you may have a pouch/vaginal fistula Pammieskrh. I know too well how trying it can be. But there may well be solutions that work well for you. I gave a brief version of my history above. I have since been to the Cleveland Clinic but, because my fistula is too low, it wouldn't work for me. It will take time for you to know for sure if it's a fistula and then more time to figure out the best route to take. But there are things that can be done. The ideas presented to me were:... [ more ]
pammieskrh I had a j-pouch redo in May 2019 and at the same time, the surgeon repaired my anal/vaginal fistula. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Advice with gas
C Colonlessnurse
kta I get horrid, explosive gas when I have pouchitis. That is usually my first outward sign. Yes, it is embarrassing. Get it treated - you will not believe the relief. [ more ]
Scott F That sounds like a great plan, @Colonlessnurse . Please let us know how it goes. If you still have major gas issues after treating the pouchitis, that can sometimes be a sign of SIBO (small intestinal bacterial overgrowth). I had that once and was treated quite successfully with a different antibiotic. [ more ]
Colonlessnurse Usually my doctor asks if I’m having any issues and I say no. Because to be honest I always just thought this was something that came with the territory of having a j pouch. So it is probably my fault I have never been treated because I have never expressed my concerns with the gas. [ more ]
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J-Pouch ForumsHelp! Need advice now!
TWISTED POUCH/ LIQUID DIET ADVICE
TL TONY LAVICTOIRE
duck11 Sorry to hear about all this. Why do you think it’s a twisted pouch, did your doctors suggest it? I have (had) a twisted pouch with some other problems from adhesions. I had worsening symptoms over two years of chronic partial bowel obstructions, so severe pain, nausea, vomiting and difficult evacuating. It got to the point where it was blocked most days of each month and I couldn’t eat anything, and even liquids would cause symptoms. I had every test under the sun but nothing definitive... [ more ]
Former Member Sounds like a plan! [ more ]
TONY LAVICTOIRE I am open to get back to an ostomie if it comes down to little or no option. My colorectal surgeon has opted to wait and see before a sinusotomy. My pouch looks pretty good now but if infection reoccurs, the next step would be to heal the sinus tract. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thick stools with cramps after eating.
Patricia _Patricia _
Former Member You are welcome!!! Yeah, drink water: before, during, and after every meal Glad to hear that [ more ]
Patricia _ Thanks for the replies and tips. I believe as I have aged that I have gotten lactose intolerant. I will have to make it a bigger priority to stay hydrated. Feeling better now. [ more ]
Former Member Yeah, before I was diagnosed with IBD, I was lactose intolerant but I still had some milk digestive enzymes in me. After I got full blown IBD, ALL of my milk enzymes were destroyed; gone. Maybe your IBD made you severely lactose intolerant too. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch issue after possible food poisoning
M Marfol
Former Member You are welcome! Let me know how it goes [ more ]
Marfol Thanks Lauren, I will give it a go [ more ]
Former Member I think it might just take some time for everything to clear out after possible food poisoning, I think your body needs a chance to heal, I would give it some time and then see how you feel after a while. Oatmeal tends to fix a lot of stuff for me, maybe give that a try? I think that is a miracle food. Maybe you should get checked out by a doctor as well and make sure everything is fine in your blood, especially white blood cell count. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Ferrous sulfate325 mg tabs
G grateful
Former Member Perfect idea [ more ]
grateful Thank you Steve! [ more ]
SteveG I had issues with too low hemoglobin blood level since my colitis times. And I always had trouble with iron tabs. As my doc also wanted me to take such tabs, I took those with a very low dosage. But since I have a pouch I always had infusions. In the last years that was a med with 500 mg of iron per ampulla. That reduced infusion intervals to 3 months and in the current year I could extend that to more than 6 months, always considering hemoglobin and ferritine (an iron storage indicating... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pelvic floor dysfunction
MIKEEYMIKEEY
MIKEEY KTA- Thanks so much for your advice. Happy Holidays [ more ]
kta You said you are doing PT. Is that for the pelvic floor dysfunction? I did pelvic floor PT more for overactive bladder, but it did teach me how to relax thigns and the sometimes helps with passing stool. I agree with hints above - go slow on the flax seed and see how it goes. Good luck. [ more ]
Former Member You are welcome You too [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch bleeding
A Andreita
Former Member Andrina! You are still bleeding?! Omg, I am so sorry you are going through this! I would suggest either go to the emergency room or go to your surgeon. Andrina, I think its time you considered getting an ileostomy bag permanently; You said before life was perfect with the ilesotomy, I think you should go back to the perfection instead of living in hell, literally; I think its time. You gave the J-pouch a shot, at least you can say you tried it. Give the ileostomy some thought and choose the... [ more ]
girlunky Hopefully you mean a bit of bleeding when you go, not a hemorrhage. If it is the latter, you need emergency medical care. Also seek immediate care if you have a fever, vomiting, or severe pain. If it is red blood when you wipe or staining the water mixed in with stool, I wouldn't panic in the short run. That could be pouchitis, or even an anal fissure. I would leave a message with the answering service, and stay with a soft diet. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Synovial cyst
D Debc
Scott F Deb, Cipro is inexpensive, if you know a doctor who would be willing to prescribe it for you to try (without the expense of an office visit). It won’t do anything for the cyst, of course, but it could help a lot if pouchitis is a contributor to your trouble. [ more ]
Former Member I am sorry to hear that, I hope things get better; do not be afraid of taking out a bank loan if you need to. I wish we had free healthcare like Canada and UK. [ more ]
Debc Sadly to report, no doctor. Because of the cyst and pain I'm experiencing, I can't work. Can't afford a doctor. I was denied Medicaid, disability, and denied help on the market place. Trying to deal with it the best way I can. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Post op pain
duck11duck11
David W I'm so glad your ostomy is working out for you. I can tell you that things only get better. Keep us posted on this little setback. [ more ]
Former Member Yeah, do not overeat all of the time and do not do extensive exercise- try to keep it under an hour. Drink water: Before, during, and after every meal. [ more ]
duck11 Ok thanks all, that’s sort of what my gut tells me too (ha). I’ll see how it settles in the next day or two with rest. I guess I should know better and not push it, I’ve just been so happy to be able to do things after so long being incapacitated. Doug, to answer your question, my pouch ended up twisting in on itself, plus had bowel wrapped around it and another segment pinned underneath, and frozen pelvis from adhesions, but no one could figure it out for a very long time. I’ve had chronic... [ more ]
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J-Pouch ForumsHelp! Need advice now!
In loop hell - will takedown help?
DK Doug K
Doug K Thanks - I have a weird mast cell disease that makes me allergic to Imodium and Lomotil because they have a little hint of narcotic dna - and I am deathly allergic to narcotics. So much so, that after all of my surgeries I can only take extra strength Tylenol post op. I am praying that the J Pouch takes care of this. Thanks for the support. [ more ]
girlunky Stay the course, you will be better after takedown. There's more small intestine at work once you get the jpouch connected. Sometimes with the loop ileo I shot out water like a fountain (that made me think of those weird little boy peeing fountains) and could listen to the sound of the appliance filling up. Now I get a bad watery episode maybe once every week or two, much better. Have you tried immodium or lomotil? Do you get enough electrolytes - try pedialyte. [ more ]
Doug K Thanks guys! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Not happy with Jpouch since the beginning - please help
M Mpale033
ytcrockpot I’m sorry to hear your going through so much. seems like your tried quite a bit of different therapies, have you tried switching doctors? I was at at my wits end with my pouch until I found a doctor that specialized in the J-pouch and wow what a difference it has made. ‘Hope you find something or someone that can help you. [ more ]
Doug K Hi Angieb and Mpale, Your stories are heart breaking. I am so sorry. I read these posts again. I pray your JPouch gets better. I am having tons of problems with my stage two recovery, loop, with tons of output and I am very worried about takedown. In my head - I was planning on giving the JPouch a year - and if I was unhappy with it - then go back to and end ileostomy. Now I have learned they could be a risky surgery. I hope your situations get better, but how are you guys evaluating taking... [ more ]
Angieb ❤️
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J-Pouch ForumsHelp! Need advice now!
Jpouch and virus issues
S Scott21
Former Member Could be ANXIETY to be honest or maybe the body tries to flush itself out to protect itself. [ more ]
Scott F Some folks have certainly reported that here, and I’ve noticed that it sometimes happens to me. It could be as simple as changes to our food and liquid intake, or it could be more systemic. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Have I put it off too long?
LH Liz H.2013
Former Member Definitely see a GASTRO ASAP [ more ]
ytcrockpot Changing your entire digestive system I feel is something that needs to be checked often, since cancer and other issues can arise in the pouch. I’ve had a scope test every year for the past 40yrs, sometime twice in a year. Thank god, I’ve never had cancer, but have had a bad case of pouchitis. [ more ]
Liz H.2013 Have you had a yearly scope test since you’ve had the jpouch? I think I may have had one done over the last 10 years. I don’t think it was to check out my pouch though, I believe it was for a stomach issue. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cuffitis
K Kmiller
Former Member Yeah definitely agree with calling doctor. Are you doing better now??? [ more ]
Kmiller Thanks @Doug K . I will call the Dr tomorrow. I have prednisone here but don't want to self medicate. Just need to feel normal! [ more ]
Doug K For me - the steroid knocked it out quickly - but some of it does absorb in the system. But maybe you can knock it down with the steroid and control it with the Canasa. [ more ]
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J-Pouch ForumsHelp! Need advice now!
fruits and vegetables
MIKEEYMIKEEY
Former Member ❤️
MIKEEY Liz- Thank you for your response. I keep eating certain fruits and vegetables and thus far so good. You should consult with your Gastro doctor. [ more ]
Liz H.2013 I definitely can not eat fruits, veggies, leafy greens or beans. I used to, about 5 years ago. But things have changed for me. From what I’ve been reading on these posts and Facebook from other jpouchers, it just depends. I just don’t know what it depends on. That’s what I’m trying to find out. Why the change for me and if there is anything I can do to change it back! I miss a good salad!! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Third week of unexplained illness. Any ideas?
F Fredrik
Former Member I hope so too dear [ more ]
Brellis CTBarrister, 2 capsules? Do you take the liquid or the pills of pepto bismol? lauren, I have not tried it and havent needed to yet. I really hope I can have my jpouch for life... [ more ]
Former Member Sorry about that honey. I hope it gets better. Have you tried the Cather option? I hear it works for a lot of people. If things do not get better, are you open to getting an ileostomy in the future? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Brain Fog / Mental Clarity
M MAP
Jess24 Have you had your b12 levels checked? I had some similar symptoms over a year ago, saw a neurologist and had a bunch of testing. Then had my b12 checked and it was dangerously low. I now take a b12 shot once a month. [ more ]
JPouch_2016 Rose violet: That is interesting. I’m going to do a little research. Thanks! [ more ]
roseviolet There is a condition called vestibular migraine where you feel like you're going to fall or the world is spinning around you. You can have these symptoms without actually having the headache. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Entyvio
F Frecklechik
Still Standing PTL I've had no side effects from taking Entyvio and thankfully, it seems to be working for me. [ more ]
girlunky I took Entyvio with zero side effects, but also zero therapeutic effects. But worth a try, it certainly works for some people. [ more ]
Doug K Nope - gave it 2 years - never got me off prednisone. It works for about 40%. So give it a shot. Some have had great success. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fissures
A amtrpt
Scott F @amtrpt It’s hard to know from your description what you’ve actually already tried, and fissures can take a lot of patience. I assume you’re using warm sitz baths very regularly. In any case, in addition to the nitroglycerin JHendrix mentioned, some folks have success with nifedipine or diltiazem compounded into an ointment. If all else fails Botox is sometimes used to temporarily reduce anal sphincter pressure, which can give the fissure a chance to heal. Good luck! [ more ]
Former Member I think maybe it might be time for biologics like Remicade. MAybe you should suggest it to your Gastro or surgeon [ more ]
JHendrix Did your ointments include nitroglycerin rectal ointment? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Leakage/Night Accidents
J Jay-Pouch
Former Member Do you celebrate? [ more ]
atimko I just realized that I am actually 18 years post op. Time flies. I rally haven't had any complications (except for pouchitis in the first month). I was actually in the Army when i had the procedure and did a further 5 years in the Army before I retired in 2006. [ more ]
Former Member 12 years?! You should definitely celebrate! Have you had any complications??? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Experiencing new issues!
I Iona
Former Member Getting dehydrated at night is pretty common, you might want to start drinking water at night, not a lot but just enough to get you by. We are constantly losing water, every breath. I know it stinks but we need water throughout the day/night. In the hospital as I am sure you noticed, they give us IV fluids through out the day/night. Its very important. Maybe drinking water throughout the day and in the evening will solve your dizziness/lightheartedness. [ more ]
atimko I drink about two liters of water a day, when i am at work. I don't drink too much in the evening. [ more ]
Former Member Do you drink fluids throughout the day??? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Too many applesauce-like stools
R readann
atimko I use Metamucil. One thing i do is to take the Metamucil with only a half glass of water, which seems to make the stools thicker. I usually take it in the morning, but sometimes take it again at supper. You don't want to take too much though, because it can give you gas pains. It is mainly trial and error. [ more ]
readann I agree with you, @Kmiller , the frequency needs to go down. I will try the cholestryamine, soon and maybe even Immodium. I just dont want to get backed up. [ more ]
Kmiller @readann nothing so far thats a no, but I haven't tried too many veggies yet. Working to expand that. I really want a salad but trying to decide which day to ruin if that doesn't go well 😀. So this morning, went many times just a little. Hadn't eaten yet, so ate a chicken lunch meat sandwich and then was able to fully empty. I think sometimes the discomfort is gas causing pressure too. I've been fortunate with food that I don't get butt burn very often. I stick to water, coffee once a day. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Colectomy & Reversal
C Chosen
atimko I had the total colectomy and take down surgery in 2002. I was told to do pelvic floor exercises prior to my surgeries, so I think I had a pretty strong pelvic floor once I had the take down. The three months that I had the ileostomy was pretty bad, with a lot of sensitive skin around the ileostomy. I was actually relieved to have the take down surgery. One thing I would say was that the first time real food passed through the pouch was pretty painful, but after that it wasn't so bad. [ more ]
FRH You may or may not experience burning or skin irritation if you’re having diarrhea. Keep skin clean, Dan don’t wipe and use Calmoseptine cream ointment. It’s a lifesaver. The only one on market that had BOTH calming ingredients as well as moisture barrier. I swear by it. [ more ]
FRH I’m really rooting for you. The packets are wonderful of the Konsyl , I use original formula. The pills are great to have on hand when you’re at a restaurant. In the end though, I take it 3 to 4 times a day so I get the round cylinder I believe it’s 12 ounces for Home And can just dip my teaspoon in, according to how much I think I need for that particular meal. I’m also now experimenting with a half teaspoon before meal and a half teaspoon after meal. It’s all trial and error. Some meals... [ more ]
See all 17 replies...
J-Pouch ForumsHelp! Need advice now!
Back to work
R Ryan138
Former Member You are soo lucky!!! Usually 9%ers go more overnight! I see you are a lucky 9%er lol. And yeah, I do not take loperamide anymore myself and I am 6 years out. Maybe you will not need it ever [ more ]
Ryan138 Lauren... I go 2 times each night. Sometimes I only go 1. I sleep really well and luckily feel really rested everyday. Scott.. I have found that lomotil and Imodium cause me to strain trying to empty. Maybe it will work for me later as I am only 3 months post take down, but for now I am staying away from them. [ more ]
Former Member ❤️
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
Night time incontinence
ChrisSChrisS
Former Member I hope things are better now. But yeah wearing a diaper and setting an alarm might be the best thing for you at this point. I go at least 3x overnight without an alarm clock, but some people need alarm clocks, absolutely nothing wrong with that, I used them a lot in the past for ileostomy care, Alarm clocks saved a lot of leaks and washing the sheets lol [ more ]
Ljz I know it’s been awhile since this was posted but just saw this. I had to always set an alarm to get up to avoid nighttime Incontinence but a pelvic floor doctor recommended and it has worked great for me- she emptied out a bottle of enema prep and suggested I fill with warm water and do warm water enema before bed. Really helps to fully empty pouch. I use Vaseline to lubricate it. I also use Ilex paste, a large pea size drop placed at outlet. Seems to help prevent leakage. Agree with Scott... [ more ]
Aimc I'm usually up once a night to pee. I think that comes with age. Lol Aimee [ more ]
See all 14 replies...
J-Pouch ForumsHelp! Need advice now!
Can Jpouchers be vegan
N Nessie
Former Member I have been vegetarian for 5 years, no problems except when I overeat to often lol [ more ]
Former Member ❤️
CTBarrister I found that raw carrots was my biggest culprit in causing partial and full blockages. Use the 28 chew rule- 28 chews before any swallow. Cows which are mostly vegan spend 8 hours per day chewing their food- an average of 40,000 jaw movements per day. If cows can do this, 28 chews is not asking a lot! [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Gas & constipation
R rrip
Former Member ❤️
Former Member That is really ironic! What made you not wear it in the ATV? Any particular reason??? [ more ]
rrip This is what troubles me so much... I have never for the 40 years I've had a driver's license driven without a seat belt, & never ever even ride as a passenger without a seat belt. Even as a kid I used the seat belt without being told. The one time I go without it was in an ATV? I can't understand my thought process on that one. I really am lucky. [ more ]
See all 52 replies...
J-Pouch ForumsHelp! Need advice now!
Chronic Diarrhea
Y ytcrockpot
Former Member Oatmeal helps but if the diarrhea is tolerable and if there is nothing wrong bacteria wise, I would just work with it. I go 13-20X a day and I just go with it lol. [ more ]
Scott F That's what I suspected. It's not an allergy, but it might as well be. I'd leave Levaquin off the list of promising options. Nevertheless, there are plenty of other possibilities. If antibiotics fail then biologics often do the trick. [ more ]
ytcrockpot Thanks for the info. Unfortunately I have an allergic reaction to cipro, pain in my ankles/tendons every time I take it [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Troublesome symptoms
S Solomin
Former Member Sorry you are suffering! For preventing blockages in the future, drink water: before, during, after meals. And moving around a lot helps. These are tips I like to follow for preventing blockages. [ more ]
Solomin Hi Scott, Thanks for the info - Cipro does cause tendon issues, and Flagyl does not. I can no longer tolerate this drug either. I would not be surprised if I have SIBO, but it is challenging getting in touch with my doctor especially during the pandemic. Her secretary does not like me in any way (and I even gave her a cash present following my surgery) and probably does not pass on messages. She claims that she does not communicate with her boss for weeks at a time, which sound ridiculous. [ more ]
Scott F Hi, Solomin. Has your doctor considered SIBO (small intestinal bacterial overgrowth)? That would explain the excessive gas. SIBO is normally treated by a longish course of an antibiotic, usually rifaximin or doxycycline. Doxycycline took care of it very well for me. Your problem doesn’t sound much like pouchitis to me. A chronic partial blockage might also cause the sort of discomfort you’re describing, but not usually excessive gas. Cipro can cause the tendon problems that concern people,... [ more ]
See all 3 replies...

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