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J-Pouch ForumsOstomy & Skin
Question. What is your routine on emptying your appliance?
MysticobraMysticobra
chiromancer I think it depends on the type/manufacturer. I went from one manufacturer which I had in the hospital, to another and it changed my method. I went on line and watched a short video by the new manufacturer (coloplast) . It was simple just wiping the end with toilet paper, no rinsing, haven't changed basic method since. [ more ]
Mysticobra Thank you T. E. Long answers are good. It is a simple question. But getting it out there with some answers is important. All input is appreciated. Richard. [ more ]
TE Marie I rinse it out with water everytime I empty. Then I used TP to dry the end out before I fold it up. My ourout varies in thickness during the day from thick to applesause consistency. When at home I use a red solo cup to pour in the water. Be careful not to pour too much in as it will go uo to the top of the bag and get water into the wafer. When away from home I have a little bottle of water in with my supply bag. I carry some TP folded in there incase I get stuck emptying in a public... [ more ]
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J-Pouch ForumsGeneral Discussion
Recovery From Final Procedure
SA Swag Anderson
Swag Anderson Perfect! This helps a ton. Thanks to all of you (especially Mr Richard)! Glad to know I'm not the only one who wasn't perfect right out of the gate in terms of BMs. God bless! [ more ]
Mysticobra It never worked from the start. It was explained to me beforehand. My uc was so low in my colon that it would affect the out come. And it did. So after 26 months I had made the decision (finally) to have it removed. I haven't looked back. It will be two years in October since I did that. I feel wonderful. I don't regret trying it. But it was not a good experience. Your doing well. You will be ok. Your way ahead of where you should be. That I like to read. And being so young this shoukd not... [ more ]
CTB23 I use Benefiber instead of Metamucil. My surgeon recommended either this or Metamucil Clear. I believe because in some people it can cause less gas. I had used Benefiber for years when my GI thought I had IBS so I was familiar with it. To me it seems to dissolve well and has no sugar or taste to it, also not grainy. My surgeon is happy with my results and I just had my first pouchoscopy which showed that things are good with just some inflammation in the cuff but no symptoms of cuffitis. So... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Low pressure
BranchyBranchy
skn69 Yup, very low...when I had my possible "TIA" or whatever that was my pressure was critically low...90/50 and lower depend on the hour...Sometimes hard to lift my head off of the pillow some mornings....that is why I refused the BP meds that they wanted me on "just in case"...I need to est salt or my head swims, I work out quite a bit and don't have a/c so I sweat...and lose salts....my k pouch runs watery unless I am on opiates (I hate them ) so salt is an issue for me....but salt isn't... [ more ]
Lambiepie Yes, I had low blood pressure (90/60) during the first couple of years with my jpouch. It increased after I put much needed weight on and became more hydrated. One thing that helped me was the "legs up the wall" yoga pose. Lay perpendicular to the wall with your buttocks against it and your legs straight up against the wall. A few minutes each day, as long as you have no contraindications medically. It's not a cure-all, but it can help. [ more ]
Former Member I have low blood pressure now. Well the 90 over 68 they just measured yesterday is still in the normal range but still on the low side. This happens to me most of the time now. I am wondering if my J Pouch is to blame for this or could it be something else? If anything my pouch is why I'm anemic now [ more ]
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J-Pouch ForumsGeneral Discussion
Weight Loss
M Matt91
skn69 I am neither fat nor thin but fit...since I'm a professor I get summers off...and I spend 3hrs/day working out in the pool. I climb stairs at home (very, very slowly...up to 60xs a morning...) and mix it up with pilates and yoga...doing more or less daily according to my pain level (I am never without pain, I just push through it as best I can and sometimes it eases my pain). I am a compulsive sugar-a-holic who binge eats ice cream and chocolate...so I fight my weight daily since I have no... [ more ]
Former Member Is it our metabolism or do we become less active....... We no longer run for the bus or dash up those stairs, we walk at a leisurely pace that's comfortable, yet our consumption of food and drink, whether junk food or not, remains the same. Once the unwanted body fat has been amassed, unless accompanied by a strenuous exercise programme, calorie counting, smaller portions and bowl size will take forever to lose the fat. Eating when not hungry can be a sign of dehydration, our brain confuses... [ more ]
Deb C When I left the hospital after my j-pouch surgery in 1993 I weighed 103 pounds. I looked like a skeleton. At first I had no appetite and had to force myself to eat. Eventually the appetite returned and I was in the habit of eating even when I wasn't hungry. Twenty years later, and a few years into menopause I topped out at 156. That was more than my highest pregnancy weight of 152. I read a book called Mindless Eating and started making some changes based on ideas from this book. I bought... [ more ]
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J-Pouch ForumsGeneral Discussion
GIs in NorCal
Gutless GirlieGutless Girlie
Claudia S I too am looking for a new GI (previous GI Surgeon retired) who is familiar and works well with the unique J pouch patient. I was just informed by Blue Shield today, that there is a GI Center in Monterey whose Group are very familiar with J Pouch Patients. So if you know the Monterey GI Center and want to recommend a name or names from the group, I'd love to hear from you. [ more ]
SarahXYZ I really liked Dr. Mendioa at CPMC in San Francisco. No speciality in jpoiches though, just really compassionate! [ more ]
Jan Dollar He is my GI! He was at the SF Kaiser before he came to the East Bay. However, I am not sure he is taking new patients. He is the liver disease specialist here, so he's very busy. I am also unsure of the rules about seeing doctors outside of your residency area. But, I imagine that if there is no one qualified in your area, you can travel. Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
A/V Fistula and Cuffitis
S Sunshine608
bml I am sorry to hear about your troubles. I also had a recto-vaginal fistula and cuffitis. I ended up getting the cuff stripped (which meant getting another ileostomy, revising the j-pouch, getting the fistula fixed and then reconnecting). I am currently recovering from the takedown. So far so good except the fistula opened up again before the last surgery. I have a seton in but not a lot of leakage. I see my surgeon in 3 weeks for follow up and will ask about the plan for the fistula. How are... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Suspected blockage cleared?!?
A Alisha
Alisha The doc & I discussed this actually, but the radiologist knew & still disagreed. (The ER doc was openly annoyed because he apparently wouldn't change his opinion despite the doc's insistence, actually.) And it makes terrible sense to me. See, while I was at MUSC, they did all kinds of tests, MRIs, CTs, x-rays with special contrast, etc. My fistulae (I actually have several, the main one at the entrance of my vagina being the most severe, but there's also a small one beside my anus... [ more ]
Scott F I wonder if the fistula could be confused (on CT scan) with a hydrosalpinx. This would be a much greater risk if the radiologist didn't know about the fistula. [ more ]
Alisha It does & it confirms my suspicions that none of the doctors treating me ever listened to, much less helped with. I'm certain it's from my vaginal fistula. It constantly drains stool into my vagina. I've been insisting that there had to be consequences, but I haven't had a pelvic exam in the 5 years since I've lost insurance. It's definitely not a pregnancy, since I haven't had sex in years. (Another thing I've been robbed of by my disease & crappy medical care, but that's another... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Polyp Obstruction
I Infiniti512
Infiniti512 I am just nervous every time they have to go in. Scared of mistakes but I seem to have gotten a good surgeon. Taking time off work is always stress as well. I'm going to schedule it soon and get it overwith. It had been growing at least three years. I know I felt something but thought it was just scar tissue. Thanks for responding and good luck with you too! [ more ]
Infiniti512 Thanks. I have been trying to sleep sitting up for months but it's just not a restful sleep. I saw my surgeon yesterday and he related the pain to stress so I'm going to try and manage it better. Good luck to you! They purposely make it difficult, and make you jump through hoops, and I think it's to discourage you. [ more ]
Scott B Hey Infiniti512 Sorry about the sour stomach and stress. I was in a similar boat not too long ago. I was so nervous with any procedure 'down there' that it prevented me from so much in life. Once it was done it was a game changer for me. What specifically are you nervous about? I was nervous about things becoming worse. I forgot who it was, but they asked me worse than what? I was already uncomfortable, pouchitis was bad, and I was using the bathroom all the time with only a portion of the... [ more ]
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J-Pouch ForumsOstomy & Skin
Dessicated coconut
heverhever
Saff Hi Heather, dessicated coconut is fine for me, its the stringy fruits / veg like pithy citrus, stringy greens like asian greens, celery, and raw apples and fruits with lots of skin that cause trouble for me. [ more ]
hever Thanks for your replies, I used to eat coconut macaroons too(ex-Londoner), thats what I thought could happen as I'd heard from others in the past that they had probs with certain foods. I could never eat pith on fruit with a Jpouch for same reason, used to get stuck and took ages to pass and caused alot of discomfort, so I think i'll just give dessicated coconut a miss. Too chicken to try it as have had alot of blockages in the past and they were awful [ more ]
phdwithpouch When I had my ileostomy I ate a coconut macaroon (a dessicated coconut type not the fancy brightly coloured ones) on one occasion and remember it causing a fair bit of discomfort as it went through - had a hot bath to help things along and it came out of the stoma in big lumps of the stuff [ more ]
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J-Pouch ForumsGeneral Discussion
Juicing
G GraceB
GraceB Thanks for the info. I meant just the juice no fiber. You are right. I guess I will scratch that one. The idea of cooked vegetables and blending would be better adding a little bulk to it. Thanks Bob [ more ]
Bobish yeah theres quite a few on here that do. Many do as they say it affects them badly though. First off, do you mean Juicing or smoothie making (blending). The juice is basically sugary by-product of a fruit with fewer vitamins and minerals. It can be helpful to monitor our sugar intake as pouchers as high sugar can cause problems. Personally i make hot smoothies (aka soups lol) from veg as less sugar and more goodness. I believe the resultant sludge has an anti inflammatory affect in the bowel... [ more ]
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J-Pouch ForumsGeneral Discussion
Redone pouch with mucousectomy, inflammation in rectal cuff?
PouchomarxPouchomarx
Pouchomarx that's what I always thought, that all pouches have some type of inflammation. But the biopsies only showed inflammation in the cuff, but none in the pouch itself. As long as I am not having issues and the scope showed all good I wont even care about it. just interesting [ more ]
Jan Dollar Well, it could just be some patchy growth, not the entire mucosa that was stripped. The main point is that the clinical assessment from the visualization is that it is fine. Every pouch and every cuff will show microscopic inflammation on the path report. This is why they always note something to the effect of "clinical correlation recommended." The pathologist is just reporting what is seen on the cellular level. He is not the clinition. This is why I like to remain awake during scopes. [ more ]
Pouchomarx although Shen did not see inflammation in my cuff via the pouchoscopy, it showed mild inflammation on the biopsy report. Shen stated it is possible the tissue has grown back after the mucosectomy. Dr Remzi did my redo and it hasn't even been 2 years since the surgery, I would say hes a skilled surgeon, but can it grow back that quickly?? [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch &diet
S sunshine24a
Scott B Before anything I need to put out this disclaimer that I am not one to jump on the lasted diet wave... and as always I won't pretend to know what causes other people's ailments. There has been a lot of discussion about gluten and I found gluten was a huge culprit for me. Additionally Dr. Shen recommended the Atkins diet for me which I followed now and then and skipping the gluten seemed to help the most. It was a fairly easy test for me to verify. I play hockey with a group of guys and we... [ more ]
GraceB Sunshine I am like you If I ate that much fiber I would be going thru the same thing but burn bleeding and much bathroom visits with gas and bloody stool ending up with a case of pouchitis. I wish I could eat healthy. the vegetables that I can eat have to be cooked very well and small portions. [ more ]
Tobsterr1 ❤️
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J-Pouch ForumsGeneral Discussion
Best medicine for diarrhea when all conventional meds have failed?
andru123andru123
andru123 I totally understand. I was ready to have my J Pouch taken down after 7 years of misery. But my doctor said hey let’s try one last thing. He said it was a long shot and it could make me much worse. I discussed all of the contraindications with my doctor. We agreed that at the first sign of Viberzi side effects I would discontinue ASAP and schedule surgery. Well not much happened the first few days. I was down because I had really wanted to avoid surgery. BUT, after the first week I started... [ more ]
winter wish There is a test called seCHat but usually doctors will just trial questran or cholestgel and see does it help. [ more ]
Badjoints I posted earlier on the issue of severe diarrhea associated with a takedown and gall bladder removal. Without being too graphic; when I am in a flair I have 30+ bowel movements (yes, 30)/day. Most do not contain stool but consist of a greenish mucus discharge. My Gastro and my primary told me not to worry about the discharge but no one was addressing the excessive bowel movements. As a retired doctor I did my own research and discovered a condition called "BAD" (Bile acid diarrhea). My... [ more ]
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J-Pouch ForumsGeneral Discussion
Long term health
G Gumnut
TE Marie Colons have a role in producing neurotransmitters for our brain, like serotonin. Surgeons don't go into this with us. Since we are missing that production we might need antidepressants to assist in neurotransmitter production. Not in everybody but for those of us who become depressed. Have you ever heard of then gut being our 2nd brain? This production of neurotransmitters is why. I am on several antidepressants that help produce several different neurotransmitters. I think these are meds I... [ more ]
Gumnut Thanks everyone - will let you know how we go - and all the best to your partners also - I know how hard it is to watch your loved one going through so very much - take care everyone and all the best . . . [ more ]
Gumnut Thanks so much for your reply Meatball - yes, he is on antidepressants also but now the Drs think he may have a thyroid problem so more and more tests this week - thankyou again and all the best to you . . . [ more ]
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J-Pouch ForumsGeneral Discussion
Gastritis and NSAIDs
B BuckeyeNate
roseviolet I. Several years ago before learning of the consequences, I was using Ibuprofen for migraine relief. Got pouchitis (was scoped to confirm). Was told never to use it again. A few years later, I had a horrid migraine and reached for Excedrin. Had 1 pill and it did a number on me, but it cleared up within a week bec. having only pill, it didn't do much damage, but it sent me a clear warning. Doctor didn't bother scoping, as he was positive it was the Excedrin. No problems with pouch except for... [ more ]
skn69 Ok, off to pick some up and see if I can get any relief...I've been working out in the water 2 to 3hrs/day or more and seeing the chiro 3xs/week to try to out pay to the pain...some days I limp less but the pain still keeps me up at night...I am taking a homeopathic medication which is all plant based with valerian root to ease the spasms and crams...the new chiro over here is "shy"about cracking me or adjusting me and so I get very little relief... So magnesium will be on tomorrow's list. [ more ]
Jan Dollar Just a caution about magnesium. It can cause diarrhea and is a common component in laxatives. For Sharon, this isn't much of an issue, since she has a k-pouch and needs to keep her output thin anyway. But, yeah, magnesium can definitely help with muscle pain, particularly if you are suffering from spasms. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Seriously bad butt burn
G Golfdrumst
michhebe Calmoseptine ointment has removed all butt-burns for me. but need to use it most of the time to work properly. [ more ]
Lionel For those butt-burn sufferers I have had great success from the beginning of my surgery with a compound consisting of Nifedipine 0.3%, Lidocaine 1.5% in Petrolatum Ointment. It always works very well. Good for itching in that area too! Good luck to all of you... Lionel [ more ]
Katerina ❤️
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J-Pouch ForumsHelp! Need advice now!
Lemon Water HELP!
RZRAZRZRAZ
Former Member ❤️
Tammy1995 I'm a huge fan of coconut oil for any skin irritation. Huge benefits in drinking coconut water as well. My GP recommends lemon water and coconut water for an acidic stomach. [ more ]
Norma U The best thing is that you found something that worked for you. I struggled for a long time. Best to you Norma [ more ]
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J-Pouch ForumsOstomy & Skin
J-pouch leakage after ileostomy
K Kirtymusic
LORI726 Hi! I have a diverted J pouch with a loop ileostomy since 10/15. I have just been dragging my feet about the final step/decision which will most likely be j pouch removal/permanent ileo. My j pouch itself wasn't my problem per se, but 2 nasty fistulas in my rectal area led to my diversion. I have some sort of rectal discharge every day which is good and bad. When the leakage stops, I don't feel well (abdominal and rectal area pressure) and then I have a lot of discharge a few days later and... [ more ]
TE Marie Thanks SAFF. I am doing a lot better without my j-pouch. I had it removed 6 months after I had it diverted to an end ileo. The pathology report showed chronic pouchitis was still there. It hadn't gone away while it wasn't being used. I should have done as my surgeon wanted and had it removed when it was diverted. It would have saved me a surgery! [ more ]
Kirtymusic Thank you for your replies! My surgeon wanted to leave it in because it was so inflamed. He wanted to give it time to heal. From your replies, I think I had a little cuffitis, but it is gone now (fingers crossed). I am seeing my doctor in August and will have her take a look. I'm hoping suppositories will help if it continues to be an issue. Antibiotics haven't done much for me in the past, and I worry about being on them. I hope everyone continues to have good health! [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-pouch, Crohn's & Ileostomy?
D DavesGirl
TE Marie I had my j-pouch removed and my quality of life is much better. [ more ]
Terradon The best of luck getting the wisdom and the guidance you need. This is hard place to be in. [ more ]
SarahXYZ I'm facing having an iliostomy because of Crohn's in the pouch and dependency on Cipro. I've been on Humira and Entivyo and neither fixed the ulcerations in my pouch. My understanding is that pouches aren't made for people with Crohn's - just too much pressure on the small intestine. I also have a Perianal fistula. I'm trying one more biologic (Stelara) and then iliostomy here I come. I've known people in your husband's shoes and they say after the surgery that it saved their life literally... [ more ]
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J-Pouch ForumsGeneral Discussion
Hunka hunka burnin' gas
HockadooHockadoo
TMNoe Activated charcoal has done wonders for me and gas! You can get it on Amazon or any health food store. I take capsules but it comes in powder as well. You can't take it near meals or medications. I take it right before bed several hours after dinner. Has helped so much with gas. Good luck [ more ]
Jan Dollar Yeah, when my cuffitis is flaring, it is VERY sensitive to the presence of gas in the pouch. Jan [ more ]
Hockadoo Yikes! I forgot to mention that I have chronic cuffitis. My guess is that's the main cause of all this gas. Thanks for the advice on carbs, Jan. I have been eating a lot of bagels lately. [ more ]
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J-Pouch ForumsGeneral Discussion
Joint and muscle pain after sitting
R RGill
claire Cipro can do this to some but not others, and it can take weeks to manifest. It felt like I aged about 50 years after taking several courses. Hope you get to the bottom of things as these problems are tough to deal with! [ more ]
Mysticobra I'm a bit older. 61. But I never had joint and muscle pain until I had my removal. It's a morning ritual now. It fades as the coffee flows. Lol. [ more ]
Annikki I too was diagnosed with Enteropathic Arthritis in April. No pouch issues at all. Impacts my limb joints. Morning stiffness or after prolonged sitting. [ more ]
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J-Pouch ForumsHelp! Need advice now!
AVN diagnosis
Kara FredKara Fred
Scott F Well, the hip, at least, can be replaced. Some people might use the word "cure" for that, and others wouldn't. Other bones may be difficult or impossible to replace. Unfortunately nothing will heal a bone that has lost its blood supply. [ more ]
Kara Fred Thanks Bodini- I have AVN in my right hip and the symptoms have increased in the past two months; pain, hard walking in it, my hip 'gives' out. From what I have read, no real cure. [ more ]
Bodoni I have some avascular necrosis in both big toe joints. My doc says it's from all the pred use years ago. Both those joints are 'dead'. No real cure. I just live with the pain. [ more ]
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J-Pouch ForumsGeneral Discussion
Implant Devices to End/Decrease Fecal Incontinence
T TCM
TCM Will do, Starrynight. My best to you as you travel down this crazy path with all of us. [ more ]
StarryNight This is great news, TCM! I hope you have much success with it. Please do keep us updated as I may be headed down a very similar path and am interested in hearing more about your experience. [ more ]
TCM On June 21, 2017 I had the FENIX magnetic sphincter device implanted. Wow, I have been looking at this for 11 months and it is finally done. A good part of the time was researching, then I had a devil of a time getting my primary care doc to submit a cogent referral to have my insurance authorize it for an out of network provider. It took 3 referrals for his office to get it right. Now 3 weeks and 2 days after the implant, I am still pretty sore but getting a little better each day. (The... [ more ]
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J-Pouch ForumsGeneral Discussion
How to read survey results
SaffSaff
Saff OK thanks Jan, [ more ]
Jan Dollar In the upper right hand corner there is a link that says "show results." Click on that. Also, since you did not format it as a survey with choices that could be graphed, and only requested written responses, you might have just been better off to post it in the General Discussion forum. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Is long-term use of Pepto Bismal safe for a j-poucher?
S slouchypouch
CTB23 I take it occasionally at dinner if I am eating something with tomato sauce or going out to dinner. Like tonight, I'm getting together with friends for pizza. [ more ]
shaney So,,,,, do you guys take pepto when your stomach is bothering you, hurting or upset and tonslow or thicken stool as well? ive never taken it all of these years but now with a jpouch I'm up for trying it thanks! [ more ]
CTB23 I know it turns stools black. Never thought to look! [ more ]
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J-Pouch ForumsHelp! Need advice now!
jpouch
W wareagle
'Roo I was diagnosed with UC ~1973; had full colectomy w/ J-pouch ~2001, loop ostomy takedown in early 2002. Went through everything you are describing. Lomotil usage is dropping off, but still in use. For watery BMs occurring every ten minutes, I chug some Pepto Bismol. (I use the real thing; house brands are grainy.) Only recently have I discovered the greatest thing for acidic burning and discomfort in the rectal area. As you, and others know, TP (toilet paper) doesn't really get all the... [ more ]
aragorn My son had these same problems with his pouch, which slowly faded after about 18 months. So, have some patience with yourself. Balmex helped a lot with the burn. Diet has a big effect on the burn as well. Generic immodium, especially before bed, helps, as does not eating after dinner. Keep coming back to these message boards tho - you're not in it alone. [ more ]
peachykeen Have you tried Kegel exercises ? You should have been doing them in between surgeries. I have had my J-pouch since 2001, and I still do Kegels every so often. It's so normal for me now, just like yawning. [ more ]
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J-Pouch ForumsGeneral Discussion
mucousectomy
PouchomarxPouchomarx
Pouchomarx I just heard back from Dr Shen. He stated that he treats upon endoscopic findings and not what the biopsy shows. So no treatment at this time. [ more ]
AllyKat Maybe not. I was actually having this discussion this week with my GI as I'm on Entyvio and doing well ( btw I also had a mocousectomy 18 years ago) anyway I have not had a scope in 2 years and was like I feel ok what if you find inflammation? I'm ok do I really need to do this? Anyway my surgeon says that most jpouchers have some sort of inflammation, some it bothers and some it does not. Mine was mild but I was very very sick. Go figure, he's seen some pouches really messed up with no ... [ more ]
Pouchomarx To revisit this, I have had my redone pouch with mucousectomy now for almost a year and a half since takedown. Had my annual scope last Friday. The pouchoscopy done my Shen, he said it looks good. Biopsy showed very mild inflammation in the cuff. I haven't had any symptoms of this inflammation that I'm aware. I'm waiting to hear back from Dr Shen on this but do they treat this if it visually is not there but just shows on biopsy? [ more ]
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J-Pouch ForumsHelp! Need advice now!
11 months post-takedown was doing great ... now having setbacks ... anyone else experience this? Advice?
G GP
aragorn My son had a setback about 18 months out. Flareup, new Crohn's diagnosis. Seemed to calm down with Pentasa, which he's still on another year and a half later. He also takes Omega 3 and probiotics: Deva Organic Vegan Vitamins Flax Seed Oil, Omega-3 , and Nutrition Now PB 8 ProBiotic Acidophilus Vegetarian . He eats pretty much what he wants, keeping down on spices (like too much pepperoni pizza). Pentasa is very expensive without good insurance, but it can be had from Canada at about 1/5 the ... [ more ]
JoVic I would personally never take both. I do occasionally switch between lomotil and immodium from time to time as I feel my body builds resistance and each becomes less effective. I usually take Imodium because it's cheap and requires no prescription and my health care plan sucks. Dehydration could also be playing a factor... Are you drinking enough water??? I have to drink twice as much water as I did pre pouch, maybe more, and the ballance of Imodium and fiber helps me stay hydrated. I also... [ more ]
Bobish I take 1 loperomide morning and evening and half a tea spoon of psyllium husk. The husk does add bulk but i find I have to drink a lot more or get quite severe cramping. Without it I get more cramping but it's less intense. Perhaps try removing the fibre for a day or two and see what happens? Also do you need to take loperomide and lomotil? Could you get away with reducing the dose as that would affect your guy twitch. I'd try the fibre first, see what happens though [ more ]
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J-Pouch ForumsPouchitis
Possible pouchitis?
J Janeuk
Janeuk Thanks again Scott! Not really had much treatment, as had (10 days I think it was) of pred suppositories when it was found, by the person who did the scope. But not been able to get hold of anyone to help since, so just been waiting it out till I have a pouch appointment next week. This hospital haven't managed to get hold of them for my notes yet either! Been finding it quite frustrating! Still on the list for scope here by a more experienced person (but no mention of having checked pouches... [ more ]
Scott F Jane, it also sounds like you might be a bit dehydrated most of the time. If you're not peeing light-colored fluid 3-4 times daily then you need better/more hydration. The more chronic discomfort probably is your cuffitis. Best to get that under control, after this storm has passed. Is it being treated properly, do you think? [ more ]
Janeuk Thanks so much Scott. It is day 5 so yes, early days. I've been worried that the untreated cuffitis and/or undiagnosed symptoms I had triggered this, as have felt sick many days since January and had the same pain I now have lower down in body, which is an itchy/burning feeling. As well as the initial arthritis that was triggered in December that still flares up, every week or two. It was a bit of a shock to find my kidneys failing to do their thing after just a day of loose stool! So am... [ more ]
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J-Pouch ForumsPouchitis
new study on marijuana having great results with crowns and UC
C clouseau
DarrenKS Ever since my diagnosis of UC some 25+ yrs ago, I no longer get great sleep as before UC. With my chronic pouchitis, good sleep has been even harder to come by. I recently was given a week sample of CBD extract capsules (~14 mg each) to take before bedtime. It is still pretty early in 'treatment' but I have had multiple nights of good sleep, without waking to empty my pouch. Could this be the solution I've been looking for? Time will tell! Greetings to Jan and others that helped me thru the... [ more ]
DilipHirani Where in the UK can I obtain CBD products that will have beneficial effect on pouchitis? Have had chronic pouchitis since 1987 and average 15 times a day. After 30 years of antibiotics they have stopped being effective. Looking at other solutions that I can get in the UK or travel abroad for treatment. Can anyone recommend a CBD therapist? Thanks in advance. [ more ]
temoty Does anyone know the best brand of CBD to try? thanks [ more ]
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J-Pouch ForumsHelp! Need advice now!
menu when having a flare up
L LoveLife
TMNoe Broths are helpful when I get a flare up and Yes sitz baths really help! To help control gas (which I get very badly with pouchitis or a flare) I take activated charcoal sometimes. For fissures, I also got a nitroglycerin ointment prescription. They have to compound it for you and you use it very very sparingly. It's really helped when mine are very bad. I also never wipe - mostly pat and I use balneol with every BM. Hang in there. [ more ]
Winterberry Hi, Lovelife. You can't make one yourself, but they are found on Amazon or at drugstores for approx. $15 plus delivery unless you buy other items to reach the Amazon minimum purchase. It is a basin, shaped like a toilet seat, is sturdy plastic, and it fits exactly over a toilet (seat up). It has a small opening at the back so that when you place it on the toilet, fill it with very warm water and sit down gently, the overflow water will drain a tiny bit through the opening so you don't flood... [ more ]
LoveLife Thank you. How do you make a sits basin? [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
VSL#3 included in a research study
StarryNightStarryNight
Karma Girl 13 I use Vsl#3 with orange juice whenever I feel off. It does work and tastes like an orange julius!! Also, If you have kids any time they are on antibiotics give this to them with orange juice. It helps keep their colons healthy. Best for prevention vs in a full blown flare up. Catch it fast! [ more ]
Jan Dollar Interesting meta analysis showing some promise for probiotics for maintaining remission and VSL#3 for actice UC! Jan [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Ulceration
winter wishwinter wish
TE Marie I wish you didn't need to suffer for a year. It sounds bad. Can this get you moved up on the waiting list? If you haven't done it already you might want to start a new topic about prolapses. [ more ]
winter wish Saw surgeon today, said no pouchitis but ulceration-ischaemic with pouch prolapse. Going to remove skin tags and Botox fissure next month. I'm so tired, next June seems so far away to have pouch removal surgery �� Anyone else with pouch prolapse? [ more ]
TE Marie I was in the hospital a week but think it was first estimated at 5 days. If you are not living your normal or close to normal life then you should seriously consider it. I can go out to kunch with friends again. An example of something simple that I was too sick to do that before the surgery. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Feeling Betrayed By My J Pouch Surgeon
CalifornicationCalifornication
StarryNight Thank you for sharing your experience. What a nightmare! I did a search on your previous posts and it turns out it's the same surgeon I have just been referred to for repair of dysfunctional pouch. Now I will definitely seek a 2nd opinion. No one deserves to be treated like you were! I wish you well with your current blockage issues. Hang in there! Sending good healing vibes your way. [ more ]
Scott F Wow, that was some terrible communication. We can't actually know if the surgery was medically incorrect in any way, but what a mess. I think if my pain meds had been stopped after two days I'd still be doing prison time for what followed. Sometime laparoscopic surgery turns out to be dangerous, and really needs to be shifted to an open procedure. OTOH, sometimes it just becomes very time consuming, and surgeons vary in when they run out of time/patience. [ more ]
CTB23 Sorry to hear that this happened with you and your surgeon. My surgeon was very straight with me in letting me know his 'plan' was for laparoscopic with robotics; a keyhole incision. However, he did emphasize that this could change depending on how things were once surgery began. As things turned out, I did have the laparoscopic surgery. When I had my hysterectomy, my gynecologist did the surgery. He said he would try to do it laparoscopically, however it turned out to be open. I do regret... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Surgeons in Houston
J John2017
Gom I live in Houston and have consulted with doctors at Houston Methodist and have been to Cleveland Clinic for my UC 3 times. While doctors in Houston Methodist are good, I would still get the surgery done at CC or Mayo since it is kind of a big thing. Good Luck [ more ]
Infiniti512 I've just been introduced to Dr. Daniel Geisler at Methodist in the Medical Center. He just moved here last year from the Cleveland clinic. He's awesome and knowledgeable and his wife has UC so he gets it. Try him. Good luck! [ more ]
whatif Dr. In houston.. Houston colon and Rectal clinic. There is a large group to choose from in several areas of houston. Top notch surgeons [ more ]
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J-Pouch ForumsGeneral Discussion
how to pick a j-pouch surgeon?
J Jim1980
Scott F I had my surgery done about 1,000 miles from home. Ironically, I lived in KC, MO at the time, but didn't get connected to Elmer Fudd's surgeon. I was fortunate that I was able to stay with my brother, who lived nearby, while I recovered. I was also fortunate to have a single-stage procedure (and get away without complications), since that made for much less travel. Single-stage procedures are uncommon in 2017. I don't regret going through some inconvenience to get an experienced surgeon to... [ more ]
EAN Californication, I'm sorry to hear that you had bad experiences at Cleveland Clinic, and I appreciate your feedback. [ more ]
Californication I cannot recommend Cleveland Clinic. Go there for testing but I would think twice before entrusting my life to them. They have deceitful surgeons, poor aftercare, and will leave you in pain. My surgeon's assistant pulled my boyfriend aside and told him they try to get people off pain meds by Day 2 (this is after she asked if he had a tape recorder on him). Ohio has a bad drug epidemic and the patients are being punished for it, obviously. Here is a link to the surgeon I was going to consult... [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
I fear I've neared the end....
P peji911
ElmerFudd Not a whole lot to add to what people have said here. I can relate - although things did get better for me over time and experimentation with foods and supplements. Biggest gains for me have been through: fiber with each meal, and Prilosec once a day (reducing the acidity apparently not only reduced butt burn but changed the ph of my gut and resulted in better gut flora). Not sure if the sulfasalazine helps that much, but I know it also helped some when I first started back on it. Depression... [ more ]
PetFan Hey Peji, Hey all, Hang Tough and find the small positives. It is for sure that a 2 year old toddler will unconditionally love you as you are, no matter what, it is better than six feet under! Lot better! Same goes for your family and friends!! Much better! My wife had surgery now almost exactly 2 months ago and she is in pain and depressed, not to the extend at this stage as you Peji, and many other fighters out there, but still, its not good, and it is tough. We are going both to doctors... [ more ]
EricaLeeJpoucher Pej I too am having a horrible time with my j pouch but I'm six months post takedown. I hope it gets better for both of us. This website helps me to not feel alone so I'm glad it exists. [ more ]
See all 26 replies...
J-Pouch ForumsGeneral Discussion
Lomotil & Imodium?
MB mary beth
JourneyToWellness Thanks so much @EricaLeeJpoucher . That information is very helpful and I will definitely message you if I need anything! @mary beth Thank you SO MUCH for sharing everything! It's really helpful to hear how things have worked out a couple of years post take-down and it sounds like she is doing much better and has great awareness about her body. It must be really hard for you as a parent going through all of this and also letting her take the reins. I was diagnosed at 25 and am 33 now, so of... [ more ]
mary beth Hi Journeytowellness, it's Lily's mom. Neither Lomotil or Imodium, even with high doeses did anything to reduce her stools. She was going sometimes 30x a day in the beginning and even the Dr said he didn't know if she'd ever go less than 10. I'm happy to say that almost 2.5 years post takedown she is only going 4-5 on good days. She will say that it all depends on what she eats. If she eats too late or too much fiber past about 7 she will get up more during the night. Unfortunatley she gets... [ more ]
EricaLeeJpoucher I got it prescribed because I was going the bathroom a lot and having diarrhea. Colestipol is normally used for lowering cholesterol but some j pouchers use it for pooping problems. Just letting you know the colestipol pills are kinda big because they're one gram each. Colestipol absorbs other medications other medications so take other medications an hour before or 4 to 6 hours after Colestipol. If you need help with anything you can always pm me [ more ]
See all 16 replies...
J-Pouch ForumsGeneral Discussion
how much time you go to bathroom after 5 mounths (reversal)
BorislavBorislav
Scott B @shaney so weird thing about the consistency with me, when I do not drink enough water things are worse. I'm neither a nutritionist nor a GI but it seems like plenty of water is like oil for a car. My digestion just seems to functioning better. I have less urgency and although somewhat watery I am much more comfortable. I also find apples are a HUGE no no - especially the peels. I don't think (for me) any other food causes as many issues. [ more ]
Cdub Hi Shaney. These days I can eat as late as I like (within reason, not a huge meal at 10pm), but for the first few years I didn't eat beyond 9pm. I work in the theatre industry, which means I'm often working til 10.30pm at night, which is rather a spanner in the routine. Bedtime is often after midnight. My stool is always rather watery, but I do drink a lot of water. I'm always thirsty (and this is complicated by thyroid and adrenal gland problems) - I'd rather put up with a watery stool than... [ more ]
Winterberry Hello, Shaney. If you drink water with your meals that can cause runny BMs. Try to drink before, or after, your meals but not during. Allow time for your food to be absorbed by your stomach before flushing nutrients with a big glass of water. [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Feels Like Trapped Wind... But Not Sure
J JordySimo
Cdub I know exactly the area you mean! I sometimes press or rub gently on that point when I'm sitting on the toilet, and that really helps expel gas. [ more ]
JordySimo Still taking a couple loperamide tablets each day but there's times I've forgot to and it didn't really make much difference. Only reason I hold on for a while is so I empty as much as possible in one go, makes me more comfortable and confident if I'm away from a toilet. But I might try going as soon as I feel a bit of surging like you said, Bob. Thanks! [ more ]
Bobish Jordy, I'd say you are doing well @4 times a day. It probably doesn't get much better than that. If you went 5 or 6 times a day you'd probally be more comfortable overall though. [ more ]
See all 16 replies...
J-Pouch ForumsK-Pouch Korner
Flagyl for SiBO?
B Bodoni
Bodoni Food with Flagyl may help. I still get a belly ache. It's a nasty drug. [ more ]
JLH have you considered the lowFODMAP diet? i've posted info on this forum. it changed my life. difficult diet at first, but also consider it is only for 6-8 weeks, after which time you start re-introducing foods. if it works you will know within the first week. janet [ more ]
bcirray Should always take antibiotics (flagyl) with food. Ray [ more ]
See all 8 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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