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J-Pouch ForumsGeneral Discussion
Difference in pouch function after removing gallbladder?
PouchomarxPouchomarx
skn69 Neither. I am a Very, very bad eater according to the French. I tend to eat a high fat/high protein diet meaning chunks of cheese, cherry tomatoes and olives for lunch. Grilled or cooked meats and green veggies for dinner...mostly very little in the carb department and when I do it is with butter and cheese. So the fats tend to send me into spasms. Sort of like a cramping around where the gallbladder used to be. Phantom pains. I've had ultrasound, been checked for liver enzymes, nothing... [ more ]
Pouchomarx When you say you can’t handle fats as well, what exactly does that mean? Moves through quicker and diarrhea? Or pain? [ more ]
skn69 Not sure what the other people are feeling...my output got thicker (a problem with a k pouch) but other than that...nothing really different. I do not handle fats as well as before (but then again that could be age)... [ more ]
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J-Pouch ForumsGeneral Discussion
Cleveland Clinic for fistula repair
J JHendrix
n/a Hi JHENDRIX - I saw Dr. Shen back in early '11 for fistulas. He did doxycycline injections in my fistula in the hope it would scar and close. Didn't work - it was actually experimental, which it seems is not uncommon for him. He only assured me there was no harm in the procedure; I was desperate for help, so went for it. He had me do a scope and injection every couple of months, which added up $-wise, although I'd have to do some digging to come up with a $ amount. In the end, he referred me... [ more ]
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J-Pouch ForumsGeneral Discussion
Loud belly noises?
M Marn
Bubba1028 I usually just say, “wow, I’m hungry!” Or play it off like It’s hunger pains. Usually most but it, but most don’t care. It sometimes wakes me up at night, even tho we sleep with a sound machine! I sometimes refer to it as thunder growls lol, bc it sounds like thunder! [ more ]
Aimc Marn, I to have the same thing. For me it doesn't seem to have a trigger. [ more ]
Melfie No I'm not gluten sensitive or caeliac either, but i find when i eat bread is when my stomach is at its worse. [ more ]
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J-Pouch ForumsGeneral Discussion
nerves and frequency/urgency?
TeacherladyTeacherlady
Teacherlady Hi Mel - Thanks for your response! I will indeed mention it to my surgeon, but due to an insurance mess, I will need to wait a month before I see him. The thing is, this only happens when I am a tense social/eating situation. The other evenings, when I am at home, I tend to have a large soft-formed stool (thanks to Metamucil) and be done with the bathroom for hours! [ more ]
Melfie Hi teacherlady, have you spoken to your GI or Surgeon about having a dilation? I have had my jpouch for 6 years now and from memory i had a couple of these procedures early on. I am on the wait list to have another one now. I do know the pain you are talking about - does it get relieved with emptying? I also find when its bad a course of antibiotics (ciprofloxacin & Metronidazole combination) helps me. [ more ]
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J-Pouch ForumsGeneral Discussion
Probiotics and dietary advice
MelfieMelfie
Melfie Wow thanks everyone for the amazing advice. Scott i had a sigmoidoscopy last week and they have ruled out a fissure. Plus i have had two different drs examine me. Im now booked to have an MRI scan and then the stricture procedure. Unfortunately things dont happen fast here in NZ so i have a 6 week wait (gulp) [ more ]
Scott F Melfie, your pain sure sounds like an anal fissure. How was it ruled out? Sometimes a second opinion can be very valuable. [ more ]
Melfie ❤️
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J-Pouch ForumsGeneral Discussion
prostate removal w/ j pouch
V vince66
vn17137 66 years old. J-Pouch from 1989 (history of UC). BPH from 2008 (last measurement 127cc). My pouch has given me all sorts of issues since 2014, which is when the prostate exceeded boundaries and encroached upon the pouch. Accelerated bouts of pouchitis for the past 4 years. After multiple catheterizations during the years as a result of AUR, Oct 2018 I was unable to successfully withdraw use of the indwelling catheter and went immediately for the prostatectomy option. My urologist had never... [ more ]
vince66 thanks for the reply - received J pouch at age 50 (I'm now 66) in 2 step procedure and also had my gall bladder removed in 2008 - have never had any problem w/ either (eat and do whatever I want - life no different than before either surgery) but I assume I have lots of scare tissue which could complicate further pelvic surgery - don't know if I will ever need prostate removed but would like to know if I do if my pouch will be compromised [ more ]
Jan Dollar I would imagine any additional issues with prostate removal for you would be related to the degree of adhesions (scar tissue) that has formed because of your rectal dissection and j-pouch. If your urologist thinks this is a big deal, you probably should seek a second opinion from someone with more experience. But, if he is confident in his skills and only being up front about possible pitfalls, that is different. There are a few here who have had prostatectomy. Have you checked the Men’s... [ more ]
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J-Pouch ForumsGeneral Discussion
Advice for Best UK Colon Surgeons
J Jawesome
phdwithpouch +1 for the surgical and clinical teams at the John Radcliffe (& The Churchill in Oxford). Used to be headed by Prof. Neil Mortensen who like Sagar above has done operations on various celebs with UC/Crohns, though I think he has retired in the last few years. He did my emergency subtotal colectomy and the rest of his team did my J-pouch and the other ops that I had. I've also heard of St. Mark's in London being good, it was at St. Mark's that Sir Alan Parks pioneered the J-pouch in the... [ more ]
New pouchie Prof Sagar in Leeds is very good. He receives referrals from all over the UK for all things pelvic surgery related including ileoanal pouches. He has done pouches for a couple of very famous people as well so that says a lot! [ more ]
Paul H I've heard John Radcliffe near Oxford is good, echo St.Marks. You say you live in Europe, I had excellent surgery at Bellvitge in Barcelona, all their colorectal surgeons have had experience at St.Marks, in Tarragona there is an American surgeon Monica Millán with huge knowledge. [ more ]
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J-Pouch ForumsGeneral Discussion
One more hemmi question
B Bubba1028
Raj I havent had any hemmeroids but i've been inserting sudocrem up my rectum many a times finger deep. Its sounds gross but it relieves me of the itchiness instantly rather than applying it just over the top. I dont use the pointed plastic that comes with tubes for the same reason that I am scared to put it in my pouch. But the finger works perfectly fine. [ more ]
Bubba1028 How can we even get hemmeroids when we have so little of the rectum and anus left? Mindboggling. I know we must have enough to have the spinchter muscle but seems weird overall. [ more ]
Bubba1028 Thanks Scott. Doc hasn’t taken a look but says if they get worse he can do a pouchoscopy. I don’t like to do the prep or take more time off of work, or drive the hour it takes each way. He usually puts me under for it. Idk if he’d do that with me being pregnant though. [ more ]
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J-Pouch ForumsGeneral Discussion
Reversal incision infection
Gemma WGemma W
Hermione Hi Gemma I had an infection in the incision wound also. Mine opened in a number of places,had a massive hole in the middle that had a synapse to another opening. I started with a wound bag but things worsened and I had a wound pump put on it which was amazing. Had the pump for approx. 10 days and then had it packed every other day for a couple of months. Although the healing felt slow at the time it did heal well and didn't open at all again. However the nurses did keep stressing to be... [ more ]
Saff HI Gemma, I'm sorry to hear that. I've not experienced a wound infection so can't offer any wisdom, but i hope you get through it ok, I guess try and take each day as it comes, and hopefully it wont split again. Sending support and strength to get through it xxx [ more ]
Bubba1028 Sorry to hear that. Did the doc say he’d sew it back up or that he had a plan other than keep packing it? Not sure if you’re in the US, but I know you can go to a wound care specialist. My mom had surgery on her stomach and it didn’t heal well and kept getting infected. She went to a wound care specialist once a week and they’d change the bandages, scrape out the infection and stuff. I think then doc might be better able to give u an idea on timeline until it heals, etc. hang in there! [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch Operation-Advice Please
N Nick10136
CTB23 I also had my done in 3 surgeries. Like I said, I haven't had any issues aside from what was expected. Butt burn, gas at times (not bad for me), leakage after takedown in the beginning, not anymore. It is a journey and does require patience to get through it all. [ more ]
Mysticobra Good luck. I can't add anything. Alot of good advice above Good luck though! Richard [ more ]
Aimc Hi Nick, I had my three surgeries at age 58-59. I had UC also. I am now six months out. I have three to eight bms a day. It all depends on what I eat I guess. The first four to five months for me were kind of rough. I had a lot of gas and pain from one thing or another. I guess it felt as though I had a couple of, at the least, partial blockages. Do know that for us, gas can be quite painful. Do be prepared for that. Things for me are getting better, slowly but surely. Bobish is right,... [ more ]
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J-Pouch ForumsGeneral Discussion
Takedown prep
C colitisresearch
Former Member I was right then, yeah [ more ]
Former Member Yeah and that area will be made sterile during suture and the nil by mouth from the previous evening will reduce output. [ more ]
colitisresearch I called and the nurse is pretty sure it’s no bowel prep but no food after midnight. She said she’d double check with the surgeon and get back to me tomorrow. This is my one big complaint about my surgeon’s office: I have to hunt for the info that should be provided to me. [ more ]
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J-Pouch ForumsGeneral Discussion
two random question
GrannyJ64GrannyJ64
TE Marie I had the problem after my surgeries but eventually found my love of food again after everything quit hurting all the time. I lost 80 lbs and have gained half of that back. (I had the weight to loose.) I dreaded eating as it started up the digestive process which hurt as the food went thru me. I had to go on hydrocodone to help with the pain. I never felt high and didn't get addicted. In fact since my j-pouch was removed and the surgeon worked on my adhesions I take a smaller dose plus take... [ more ]
CTBarrister Irisitis is an autoimmune disorder that is quite common with persons who suffer from IBD. [ more ]
PouchLogic I almost never have an appetite, I've been like this pre jpouch. Antibiotics and uc just made me stop eating. Now I'm never really comfortable unless I'm empty. I use cannabis to help with both appetite and the discomfort from gas pain, as well as making sleeping easier. I've never been diagnosed with Irisitis, but I definitely have light sensitivity. I wear sunglasses when most people don't. [ more ]
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J-Pouch ForumsGeneral Discussion
Lactose intolerance - mild
M Marty3112
Marty3112 I’ve been off antibiotics for about a week and certainly feeling better internally! Thanks Scott [ more ]
Scott F Marty, it’s certainly possible that unrecognized lactose intolerance was responsible for some (or even all) of your persistent symptoms. While I don’t find Raj’s explanation persuasive, and his ability to digest lactose says nothing about yours, it is certainly true that lactose intolerance can come and go. In any case, please try to be honest with yourself about your symptoms if this turns out not to be a magic bullet. No one wants to be on antibiotics all the time, but it really is much... [ more ]
Raj While its all good news I dont really think dairy is completely to be blamed upon.Antibiotics kill all types of bacteria in the gut bad or good. Dairy typically requires a very healthy gut as its slow digesting , same goes for red meats. The point is on antibiotics you've kept your gut in a completely bacteria free state. Now digesting dairy is a problem. I can drink upto 2 glass milk in one go without having to go or any gas. Only excess or too much sugary dairy products cause discomfirt. [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch and baby aspirin
JaniepJaniep
Winterberry I watched an old episode of Oprah featuring Dr. Oz talking about baby vitamins! He recommended per day: two baby aspirins; vitamin D3 at 1,000 mg; calcium WITH magnesium (without magnesium a calcium tablet causes constipation); omega 3 DHA; and a multi vitamin split in two, take half in morning, other half at night. He definitely said two baby aspirin, but I don't know if two would be too much for j pouchers. Also, anyone making Dr. Oz's famous green drink every morning, you can buy a... [ more ]
Janiep Ok ... I'm starting tonight... thanks all!!! Janie [ more ]
CeeeeCeeee I take a baby aspirin every day and have done so for years. No problem doing so, for me. [ more ]
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J-Pouch ForumsGeneral Discussion
Abscess Treatment
StarryNightStarryNight
Scott F Sitz baths (hot) should help the one that’s draining, with or without Epsom salts. If you’re lucky, the hot soaks might draw the deeper one to the surface, but that sounds like a long shot. Antibiotics tend to be somewhat ineffective for abscesses, because there is no blood supply to the abscess, and blood is how antibiotics travel to an area of infection. Nevertheless, the highest dose of oral Cipro that tends to be used for any purpose is a 750 mg dose every 12 hours. The risk of side... [ more ]
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J-Pouch ForumsGeneral Discussion
Apple Cider Vinegar
SpookySpooky
Spooky I've heard a lot about Kombucha actually - it may indeed be the better way to go particularly for the digestive benefits. I'll definitely look into it. [ more ]
CTBarrister You are probably better off deriving the same benefits from Kombucha, which is likely going to help more with these issues than ACV. I see so many varieties of it offered now and it’s always with the probiotics beverages section in most health conscious food stores. [ more ]
Spooky Thanks for the replies. It does have a number of purported benefits but for me it was suggested to aid digestion/gas. I'd never drink it straight up - risk of enamel erosion among other things - but you can add a tablespoon to a glass of water. I suppose I could find ways to add it to my cooking. Otherwise I'm not sure I'm ready to jump on the bandwagon though LOL [ more ]
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J-Pouch ForumsGeneral Discussion
Scope
W wolfie
Spooky While scopes are done without sedation all the time, it seems unusual that you wouldn't at least be given a choice in the matter. I've had scopes in the past without sedation (always my choice) but you should have the option available to you, and if it's not offered, request it when you are scheduling your next appointment. [ more ]
wolfie Yes, I go to Dr. Lavery. He’s been practicing since the 70’s! [ more ]
Janiep ❤️
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J-Pouch ForumsGeneral Discussion
Looking for advice
J JenniferD
CTBarrister Still Standing is correct. For Remicade, that program is called Remistart. Not only does it reduce the cost, but the payments made by Remistart all go towards your deductible. Last year, although I had a $3000 deductible, all that I had to pay for Remicade (for the year) was a $414 infusion time on my first infusion and the $5 copays. After the first infusion, my deductible was exhausted, because Remicade is retailing at $10,000.00 per infusion in my area (Connecticut). For this reason, this... [ more ]
Still Standing Your situation sounds so similar to mine with UC after childbirth, a crohn's diagnosis and chronic pouchitis. I am currently on entyvio after trying Remicade and Humira. When I went on Remicade and now with Entyvio, they signed me up for a program that reduces the cost of these medications when insurance, deductibles, etc. make it unaffordable to us normal people. I think it got it down to $5.00 but don't quote me. With the new year coming and starting over with my deductible, I'm so glad... [ more ]
PouchLogic The other thing you didn't mention is if you have tried probiotics? I was having problems with reoccurring pouchitis, the probiotics seem to be keeping me off antibiotics and so far pouchitis hasn't come back. I currently take 1 packet of vsl3 daily. Good luck, sorry to hear that you ended up with chrons. [ more ]
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J-Pouch ForumsGeneral Discussion
Anti-Diarrheal loperamide - best deal?
aka KNKLHEADaka KNKLHEAD
Ellymae I had my doctor call in a script to Costco for 360 (3 month supply) and the price is $12.90 for 10 boxes. However, I found out my Medicare EnvisionRxPlus will cover that same amount (360) of Lomotil for $5.51. It is a shame that some kids abused this to get a poor mans Meth high (according to FDA). Was on the phone with the FDA yesterday, and they said that Costco made this decision on their own, to package it in smaller doses, and that it was not something required by the FDA. CVS sells... [ more ]
CTB23 Costco is selling 36 Loperamide for 1.29. The catch is you can only get it once a month. I only take 2 a day, so I get one and my husband gets one also. I also have a prescription for Lomotil, which only cost me about 5.00 for 120 pills. I use these when traveling, so they last me for a long time. If you do belong to Costco, and your doctor writes a prescription for you, you can get more than the 36 ct. box. [ more ]
aka KNKLHEAD Billl. Thank you. Makes good sense. I do not have a prescription, I am wondering if I could. It is much cheaper than going to Rite Aid and buying 48 at a time! [ more ]
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J-Pouch ForumsGeneral Discussion
appendix removal
S Susan33
Spooky Yes, the appendix is connected to the colon, so if the colon goes, so does the appendix - as an analogy, you can't amputate a hand but still leave a finger. On the upside, you won't be a risk of developing appendicitis now, and I recently stumbled across some interesting new research that suggests removal of the appendix at an earlier age (i.e. before age 30) actually correlates with a lower risk of developing Parkinson's disease later in life. Unexpected bonus? Maybe! [ more ]
Bubba1028 Yep. I didn’t even think of this until my doc told me after. When I have it more thought, i was like, oh yea, that makes sense. Lol. One less organ. Well, not sure if it’s an “organ” technically, but you know what I mean. [ more ]
CTBarrister Since it is part of the colon, yes. The only part of the colon that remains is the rectal cuff, to enable continence. [ more ]
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J-Pouch ForumsGeneral Discussion
Psyllium Hush
G GraceB
Raj I take 2 tsp . One after my breakfast and another after dinner. I take it in raw form with water. Sometimes I skip it in breakfast if I am planning to eat out and take it before leaving. [ more ]
Teacherlady I take one generous dose ( a sightly overfull teaspoon full, but not "heaping") before lunch each day. I just stir it, and then add more water to get out whatever is left in the glass and chug that also. [ more ]
Scott F I use psyllium twice daily, before breakfast and dinner. I mix a full dose (per the label) in 8 oz. of cold water. It mixes much better if you shake rather than stir. I get fancy and mix a half-dose of sugar-sweetened Metamucil with a half-dose of unsweetened Konsyl. This is a compromise (for me) about palatability and calories. [ more ]
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J-Pouch ForumsGeneral Discussion
Scope - necessary?
D Dog
aka KNKLHEAD My surgeon is extra cautious. Eight years since original surgery, he wants me to see him every year for scope. I am also doing a CT scan (last one ever) in a few weeks to double-check other organs. I have to say that my last pouchoscopy, the insurance company didn't cover it as a "colonoscopy." And with Obamacare, this is the kind of preventative surgery that would be covered, I believe. They were going to charge me a bundle, but I was able to get the codes changed to "colonoscopy." Just be... [ more ]
Jan Dollar The risk of avoiding follow up scopes is dependent on your original diagnosis and length of time since diagnosis. If you never have had cancer or dysplasia, your risk is lower, but not the same as the general population. With a high deductible plan, you need to set aside money on a monthly basis to go toward your deductibles. Set aside about $100-200 per month. Stick it in an HSA account. That money will lower your taxible income “above the line” (like a payroll deduction). Then, next year... [ more ]
Tobsterr1 ❤️
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J-Pouch ForumsGeneral Discussion
Effects of a salty snack or calorie rush ?
FM Former Member
Former Member On occasions, my sleep pattern gets messed up too but I'm sleeping ok. In addition to fluids I already consume; a couple times per week I drink an electrolyte mix; which is a rehydration solution recommened by St Marks Hospital. [ more ]
Raj Have you tried any rehydration solution currently. They contain a decwnr amount of salt and glucose. So if its dehydration thats causing the fatigue you'll know. My sleep pattern's also little messed with the pouch. I feel sleepy in the noontime. Its almost like I have to hit the bed. A black coffee or tea would make it go away but its something I never felt before the pouch. [ more ]
Former Member My fatigue only started since my J pouch surgery. I experienced episode of tiredness with the Stoma, it was never to what it is now; then I wasn't even aware it was dehydration. Not longer after my J pouch creation, I was admitted into Hospital many times by emergency Ambulance, on each occasion, suffering from severe dehydration, similar to what I'm experiencing now. At the time, desipte what I was drinking, I wasn't absorbing enough. Since takedown, I've never dehydrated to such an extent. [ more ]
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J-Pouch ForumsGeneral Discussion
Diet
C Charity
Nikino I hope your mom feels better soon. I enjoy & my jouch responds well to plain Greek yogurt smoothies. I slice bananas & freeze them so they’re available & I buy frozen blueberries. I put a 6oz yogurt with 1/2 banana & 1/4 or slightly more blueberries add some water & blend in a blender. I try to keep it thicker so it creates a thicker stool. I’m not always so careful but I definitely avoid fried foods & I avoid all nuts (I can eat nut butters like peanut butter), I... [ more ]
Spooky While there is no single universal diet that works for everyone, I've dealt with a number of partial obstructions and a 2 full obstructions (both full obstructions were post-op). Google "Low Residue Diet" for some ideas on what is best to eat while your mother is recovering. There are even some sample full daily meal plans online you can use as a guideline. In general, soft, easy to digest foods are key. Skins and peels should be removed from fruits and vegetables, even if they are well... [ more ]
Charity Thank you so much!!! This helps so much! [ more ]
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J-Pouch ForumsGeneral Discussion
Dating a girl with a stoma
C CuriousVicarious
Nikino You are doing ALL the right things (A++ on the bathroom amenities)! Don’t push & try not to worry or get involved in “seeing”. Let the relationship continue to evolve with trust & confidence & purity. Let her have/ keep that piece of privacy (shyness) for now not having you see the ostomy during intimate times so she feels sexy & confident! I had a ileostomy bag temporarily & my husband did see it but only when I needed his help or was having a hard time changing it but... [ more ]
Bubba1028 Congrats Adriana- glad your surgery went well and hope it continues to go well. [ more ]
Andreita ❤️
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J-Pouch ForumsGeneral Discussion
Hemorrhoids
B Bubba1028
Nikino I’m so thankful for this post. I understand what you are going through. I’ve been having issues with “tightness” in the columnar “cuff” area of the jpouch & cant seem to get food (mainly roughage like cucumbers/ even cooked veggies) to pass & I have to strain & push to pass stool (TMI but little stool passes through) then I get the BB’s (butt burns) due to some slight bile seepage and I’m just uncomfortable & the tightness & throbbing I feel like could be pouchitis. I’m... [ more ]
Scott F Most simple hemorrhoid treatments are focused on pain and itching. If you’re not having those symptoms then you don’t need to treat them. [ more ]
Bubba1028 But the outside doesn’t hurt and no indication of external hemmies. I can’t feel any internal ones either. Does that make a difference? I’ve had horrible ones before so I do know what they look and feel like. [ more ]
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J-Pouch ForumsGeneral Discussion
Input
A AnnieGirl
CTB23 Red wine did a job on me in Bermuda. We were on vacation and my brother-in-law kept refilling my glass. I do drink an occasional glass. Not a fan of red wines. During the holidays, I have a little more but usually while eating, so no big deal. [ more ]
CTBarrister By the way if I may make a recommendation. One of my hobbies is to purchase and sample different liqueurs and cordials. If I see something at the liquor store I haven’t tried before I am likely to buy it. I always keep a orange brandy or liqueur stocked in my bar (think Cointreau, Triple Sec Mathilde family of cordials). It’s my mother’s favorite type of beverage and I like it too so the apple stayed close to the tree.I recently came across a very above average product in this class of... [ more ]
CTBarrister My tolerance level is same before and after J Pouch surgery and my drinking habits and intake haven’t changed much over time. Abstinence for a period may decrease tolerance levels, however my intake and tolerance has been very consistent before and since. My only issue is that red wine gives me diarrhea. Port wine for some reason is an exception. I am more of a cocktail guy than beer and wine type of guy. My own alcohol consumption patterns haven’t changed except for avoiding red wines other... [ more ]
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J-Pouch ForumsGeneral Discussion
Something positive to say...
LesandiegoLesandiego
Raj Which probiotic it is. I also take one probiotic a day. I may as well try the one you're on. [ more ]
Jan Dollar I always love seeing good news! I wish I did not need drugs to stay functional, but I am happy either way! Jan [ more ]
AARON Glad to hear things are well, I just don't think one probiotic per day is what's making the difference but if it makes you feel better mentally then that's good too. Most jpouchers don't encounter many problems no matter what supplements they take. [ more ]
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J-Pouch ForumsGeneral Discussion
Does anyone use enemas for pouchitis?
F FelixGust
FelixGust I have no intention of cancelling my appointment. I haven't used the enimas for one day and today I am getting the cramping back. [ more ]
Jan Dollar At least now you will have something more to discuss with your surgeon! Don’t cancel that appointment. Jan [ more ]
FelixGust Thanks Jan, I had some predisole enemas left over so I decided to do my own trial because Iwas going to have to wait a couple of weeks to see my surgeon. I have definitely seen a big improvement which is a bit of a surprise as previously with UC nothing used to work. I am much more comfortable. [ more ]
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J-Pouch ForumsGeneral Discussion
Work and the pelvic pouch plus Crohn's
M maddie18
Accept It Hi Maddie, I retired three years ago at age 56. I just couldn't do it any longer. I often ask myself now...how did I work for so long. I had a desk job that was not stressful, but with the side effects of j pouch surgery, even a desk job was difficult. It is different for everyone and took me a long time to make the decision. Good luck with your decision! [ more ]
Scott F Hi, Maddie. You don’t say anything about the work involved, and I think that’s critical. Some jobs add stress to our lives and give back little besides money. Other jobs can help keep us grounded in the world, and may reduce our stress. In addition, some basic accommodations by an employer can substantially reduce the stress of being ill at work. Are you sure that leaving work would cause you to feel less stressed? The answer has to include the economic impact as well as the work itself. [ more ]
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J-Pouch ForumsGeneral Discussion
sudden and continuous clear leakage; thoughts?
GinLynGinLyn
GinLyn Update: the stoma nurse wants me to try irrigation while I wait to see the Crohn's people who work with my surgeon. I have to call to follow up on that appointment today. Bit nervous about the irrigation, especially after reading all the warnings in the instructions! As to meds, only loperamide; I take 8 20 mg capsules a day. So I presume the specialist might want to review that as well. Hopefully will be seen soon! Gin [ more ]
Scott F The good news is that someone can take a look with a scope to see what’s going on, if they can’t figure it out more easily. Some generalized GI inflammation might behave this way. Are you on any medications to help your gut behave? [ more ]
GinLyn Yeah, I had that question too. But apparently it is a loop ileo, for some very technical reason I don't understand. (I think because I don't have much left to work with, but I could be wrong about that.) So some leakage can happen with very loose output; however, this is waaaaaay more than normal and, as I said, doesn't generally contain faeces. Other symptoms: general discomfort in the abdominal region from time-to-time, but nothing more than normal. I'm tired -- make that exhausted -- all... [ more ]
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J-Pouch ForumsGeneral Discussion
Choosing a surgeon
M mremp
RHF Thank you. [ more ]
TE Marie I suggest getting a surgeon at the Mayo Clinic or Cleveland Clinic. Dr. Kellie Mathis at Mayo's in Rochester, MN is excellent. I'd advise that you have a surgeon that can do the surgeries laproscopically. This will save you the potential for many more adhesions/scaring. [ more ]
colitisresearch First- I think having this type of surgery done either at a teaching hospital or one that has a sept that specializes in GI surgery is important. From there you can see from their web site which colorectal surgeons do jpouch surgery. Once you get a few names- ask if anyone on this site has been to them. When I asked my surgeon how many jpouch surgeries she performed- she didn’t want to give me an exact number but rather told me how long she’d been doing them. It can be a daunting process so... [ more ]
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J-Pouch ForumsGeneral Discussion
Butt Burn
K Kim_A
Sunflower70 I get them at CVS or online at Amazon. Look up MetaMucil Fiber wafers. The new chocolate flavor is fabulous. The apple cinnamon is pretty good. They get stuck in your teeth, but are worth it! I really wish I knew about them when I had my interim ostomy because I couldn't make myself drink the metamucil power. [ more ]
GraceB Where do you get Metamucil fiber cookies? [ more ]
Sunflower70 Hi Kim_A, Have you tried Ilex cream? I'm having issues too (two years post take down) and I find that ilex cream is the only cream that really helps. My butt burn is more like an itching/tingling/annoyance that lasts for about a half hour after I go to the bathroom, so it's not as bad as the initial butt burn I had after surgery, but it's still very upsetting to be so distracted by that part of my body for large parts of the day/night. Even though ilex cream is just a barrier cream without... [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
Fiber pills
G GraceB
GraceB Thanks everyone for responding. I had to go for a stretching a week and half ago. I am still having problems. I know I don't eat to much fiber because my system can't handle most veggies. I have been drinking prune juice during the day and Metamucil at night. I am still having problems. My gastro is saying that I may have to be stretched again. I am seeing my surgeon on Tuesday to see what the problem may be. I have been stretched quite a few times before. This is the first time I am having... [ more ]
Scott F I tried the Metamucil capsules, but they didn’t mix well enough with my stool to do their job. [ more ]
Still Standing I have also used the pysillium husk raw organic I bought from Amazon - 1 teaspoon every morning. It is tasteless when I mix it with my morning smoothie. I personally like it better than Metamucil. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Anal stretching
G GraceB
GraceB Thank you everyone for your comments. I will let you know what the doctors are telling what I have to. Thanks Grace [ more ]
Former Member Is this not referred to as Dilation rather than anal stretching During my takedown surgery I had dilation, although I didn't discover this until some months later during a consulation. Dilation was required due to the narrowing of the anal canal, which apparently, is a normal part of the recovery process. I assume it'll be the anal canal rather than the stretching of the anal sphincter, it's normally preferably that the anal sphincter remains tight to prevent leakage, which the pelvic floor... [ more ]
Raj Yeah I got that done once when my UC was wrongly diagnosed for a anal fissure. They try stretching your butthole cause apperently sitting too long causes it to squeeze up not letting you pass stool properly. I think it was bullshit in my case the docs didnt even know it UC causing the blood and irregular BMs. Have you tried doing pelvic exercise. They might help you get over with the control. Earlier I found it difficult to empty my pouch too. Now I just go less and hold more. Also something... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
pouchitis and pregnancy
B Bubba1028
Bubba1028 Humm you have some good insight. I haven’t heard back from my gastro yet but did decide to call my OB just in case. They think it’s just growing pains but I’m not so sure. I have an appt tomorrow (they bumped it up from next week) and I’ll see what the doc says. Funny you said you’re prob not pregnant. Let’s hope not! lol. [ more ]
Scott F It’s probably not pouchitis. Bleeding isn’t a particularly common sign. There’s a decent chance that the bleeding is from hemorrhoids. Hemorrhoids are common in pregnancy, and frequently bleed. The abdominal pain is trickier to work out, since pregnancy can cause discomfort, as well as pouch or other non-pouch GI issues. It may take some detective work to figure out. If you needed a pouchoscopy (which you probably don’t) it should be pretty straightforward during pregnancy, as long as the... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Opinions about medicinal marijuana for J-Pouch, and my story
FM Former Member
TE Marie Valli - Too bad your surgeon wasn't much help. I've always had to deal with my Internists to get pain medications. At least she said she was neutral. I'm not telling my doctors about anything as it isn't legal in my state. I buy it in a legal state. If it wasn't for family we'd move. Strange, I'm the same with prescription medication but wouldn't drive after cannabis use that contains THC. [ more ]
valli Saw my surgeon today and she is treating me for pouchitis with flagyl hoping that will help the pressure then I don’t have to try anything. Will get a pouch scope done in a few weeks . If that doesn’t help I will try a few different strains as mentioned above . I asked her about trying something ( cannabis ) and she said she couldn’t help me with that . That she is neutral it just became legal here in Ontario She wasn’t that much help [ more ]
Beth-Jpouch1991 ❤️
See all 98 replies...
J-Pouch ForumsGeneral Discussion
Elbow and shoulder joint pain
M Mat
Mat Many thanks for your replies [ more ]
drone3 I have pretty bad joint pain, mainly in the SIJ , hip and knee. I only get shoulder pain when I sleep for too long on my shoulder. Lying flat on my back with no pillow under my head, I put the pillow under my knees. [ more ]
PouchLogic Hi Mat, I do get elbow and shoulder pain, unknown if it's really linked to anything other than arthritis which is common for anyone with autoimmune issues. I've had many issues related to joint pain and joint inflammation, not just elbows and shoulder. I do find keeping my arms and legs straight but relaxed is helpful. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Having problems - excessive BM and extreme fatigue
M Mat
Scott F Technically C diff *is* a type of pouchitis, though we usually talk about it separately. This could certainly be C diff, and it’s probably worth testing for, but that’s less likely than garden-variety pouchitis. Lots of us have no trouble with fresh fruits and vegetables, though a dietary issue does need to be considered, too. [ more ]
tf Could it be c-diff? [ more ]
Mat Many thanks Raj, I appreciate your response [ more ]
See all 7 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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