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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 ForumsHelp! Need advice now!
Coccyx pain after j-pouch removal
E Emma432
Emma432 Hi N/A, thanks for the Information, I‘m happy for you that you don‘t have to deal with it anymore! I‘ll see if it gets better over time, my pouch is gone so I hope for the best. Doing the exact same with the gauze/pad thing, over time you just accept and find ways to keep your pants clean. [ more ]
n/a Emma, the rectal discharge continued until I had the pouch removed . There was a period of time right after disconnection where it got quite severe - I couldn't even make it to the bathroom in time. It did lighten up just a bit as time went by, but it never stopped. I found it helpful to keep gauze in that area 24/7 (although it needed to be changed every time I peed), along with wearing a pad. There is currently no discharge anymore of any kind since the pouch removal - not from the pouch,... [ more ]
Emma432 Hi N/A, thanks a lot for your reply, I‘m very sorry for you too, hopefully you feel better now that the inflamed pouch is gone! I hope you recover well from the surgery. I suppose my rectal discharge also comes in surprise attacks, I just don‘t notice as it goes directly into a gauze swab. May I ask if it stopped or at least got better over time? Do you still have it now after your pouch removal? Sorry for asking such indiscreet questions, but for such details I rely more on the personal... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Entyvio or Stelera?
CF cstew from cleveland
StarryNight Hi cstew66, I've never tried stelara, but I've been on Entyvio for 2 years now. Just wanted to let you know that for some people it can take multiple infusions to see improvement on Entyvio. A pouchoscopy was performed after 14 or 16 weeks and my pouch looked "clinically" great, but I had no relief from my symptoms until 9 months! I was about to give up when I unexpectedly began feeling better and the nurses at the infusion center said this was to be expected with Entyvio. For some people it... [ more ]
Doug K Hi - I tried Humira and Remicade and Entyvio and Stelara. Entyvio and Stelara are both pretty safe and for me I had zero side effects. I would try Entyvio first - it targets the gut directly and I believe it is achieving better results for IBD. Entyvio is harder to administer because it is IV only - but painless. Neither worked wonders for me, but I would not be too worried about taking either of them. [ more ]
Bubba1028 Sorry you’re at this point. I chose Entyvio bc it was concentrated just on the gut. It didn’t end up working for me, so I went to remicaide which didn’t work either. [ 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 ForumsPouchitis
Val 3
M Mjmjfy
PouchLogic I've been getting away with taking one vsl3 packet daily, but I think I should up my dose or add one at another time. When i was taking capsules i took 3 at once at lunch, but I was finishing antibiotics at the time. Everyone is different so you will have to learn to adjust to what you need. The capsules do have an easier take on the go ability and with any liquid. I do find that the packets are more annoying to deal with. Good luck with your vsl3, and remember it's easier to add how much... [ more ]
Mjmjfy Yes I have pouchitis now and again. Am just trying to maintain my situation. Thinking perhaps 3 times daily might be worth a try. Mary [ more ]
Scott F The capsules are pretty low dose compared with the packets. The best dose really depends on your circumstances. Have you had pouchitis? What are you hoping to get from the VSL #3? I take a very high dose, equivalent to 32 capsules daily, to help control chronic pouchitis. [ 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 ForumsPouchitis
New Normal with Probiotics
Anne MarieAnne Marie
Bobish I've always been on probiotics (conscious choice, since my op). The first 12 weeks were full dose, then then it's down to a 50% maintenance dose. If I had a bad day diet wise i will perhaps take full dose for a couple of days, I can tell the difference between a full dose and a half dose, let's just say half dose suits me more, full dose certainly helps with ease of elimination. once established you can probably play with the dosage a little bit. Reducing it will of course save money, but... [ more ]
Scott F Probiotics vary a *lot*, in both composition and dose. I do find that a hefty dose of VSL #3 helps keep me in much better shape. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Humira rhymes with Diarrhea
F Fredrik
Jan Dollar My suggestion is to discuss this with your doc and possibly switch to a different biologic. For my enteropathic arthritis I was on Humira, then Simponi, then Cimzia. I eventually developed chronic pouchitis while taking Cimzia, so I am now on Inflectra infusions (Remicade biosimilar). Scott is right that even though diarrhea is not a listed side effect for Humira, for you it seems to be. My point is that you do have options. Switching to a new biologic is easy. Jan [ more ]
Scott F Humira has plenty of side effects listed, but diarrhea isn’t one of them. On the other hand, the set of things that make a J-pouch go crazy is probably different from the set that makes a colon go crazy. Plenty of people use Humira to control pouchitis, but it doesn’t sound like your go-to drug... [ more ]
Fredrik Very very liquid stool - more liquid than I typically have with pouchitis. I would say one an hour - which is a bit more than when I have pouchitis that is treatable with antibiotics. The urgency is like with pouchitis - from zero to a hundred in minutes. The urgency is the only thing that has gotten better with the help of antibiotics unlike consistency and frequency. [ more ]
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J-Pouch ForumsFAP Forum
Ileostomy
CariCari
BillV Getting a Barbie (or Ken for guys) butt means that the anus is removed. The anus is never needed when getting either a K pouch or BCIR. The main reason one would opt to keep their anus would be to try another J pouch in the future. For me, the closure of my bottom was uncomfortable (when sitting) for about a week after surgery, but I had no pain sitting for the 12 hour trip home after being discharged from the hospital. Others have had different experiences. About half of BCIR surgeries are... [ more ]
TE Marie Yes a butt means taking all out including the anus. I don't know about how this would affect getting a K-pouch. There is the possibility of leaving this intact but not recommended for me. I did get diverted to a perm ileo for 6 months before getting my j-pouch and all removed. Did they discuss the option of resting your j-pouch by getting diverted like this? [ more ]
Cari By Barbie butt meaning taking out everything right? So anus and all? Does it hurt in general or just when you sit? That’s the other hard decision is to close it all off or not? If I do that will I be able to go to a bcir pouch if needed down the road. [ 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 ForumsPouchitis
specific strains of medical marijuana
Beth-Jpouch1991Beth-Jpouch1991
TE Marie Indica strains might be a good place to start. [ more ]
jwil44 Hello what state are you in an how has it helped you since you got your card...please share your experience thus far...what strain, was the process easy to obtain your card? Etc., thanks in advances! [ more ]
PouchLogic Diesel, bubba kush, cheese, Ak47, wappa and there are many more. As I have said in another post, it's not so much the strain but the thc/CBD percentage along with a few other factors. You need to figure out what works for you, you may find that some grows have to much Thc for you. Every harvest is different so you don't always get the same thing from the same plant. It's also good to have variety. [ more ]
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J-Pouch ForumsPouchitis
Inflammation
R rebel
S.Renee ❤️
jwil44 Great question....I have been having ALOT of trouble as of lately leaking at night, frequent frequent (alot) of bathroom trips lol ...have to try an find humor as I'm writing because literally I don't sleep much at all an is sending me on an emotional rollercoaster smh. Recently went to the eye doctor an he seen inflammation during my eye exam so he sent me to see an ophthalmologist to get a field test etc., then he says the same thing an said I needed to have an mri because of the... [ more ]
Scott F Inflammation doesn’t spread. It can sometimes develop in more than one place, but it’s just the body’s immune system going to work (sometimes in the wrong place at the wrong time, with destructive results). [ 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 ForumsFAP Forum
Weight loss
CariCari
PouchLogic You are likely going to loose some weight due to surgery, prep and recovery but the pouch doesn't weigh much. I imagine that provided everything goes well and you recover quickly and are able to start eating normally your weight loss would be minimal. That being said it depends on your body and you, I can loose weight fast just by missing a meal or two. The other thing is that without the jpouch food can travel faster through so you may not absorb as much nutrients. [ 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 ForumsK-Pouch Korner
Rectum Removal Optional?
EmilyJTEmilyJT
JLH yup, no more colon with the k pouch. you'll have a barbie doll butt! sore after the surgery, but no more need for it. when is your surgery scheduled? did your surgeon train under dr. kiran in nyc? he had mentioned training an australian. we'll be here for you. janet [ more ]
LadyTay97 I was not given an option. I had colon cancer and every bit of the colon had to be removed so there was no chance that the cancer could come back. That included the rectal area. Good luck and take care. [ more ]
Raj I dont think they give you an option to keep the rectum atleast I wasnt given any. My surgeon told colitis has a very chance of flaring up in the rectum so its best to remove most of it. Its not worth having another surgery in future if the rectum developes ulcers. The pouch is a substitute for the functions of rectum. [ 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 ForumsK-Pouch Korner
UC vs Crohns
AB Arlene B66
Arlene B66 I have a friend who has had a k pouch since 1980 (Dr. Gelernt Mt. Sinai) and has never had pouchitis. and she empties every 8 hours! So I am at a loss as to why that is. There are new meds coming out all the time so I hope that I can maintain my pouch for years to come. [ more ]
Shavon March, this is what my GI told me. Nothing brings out Crohn’s like a pouch. Often patients have Crohn’s that only presents UC symptoms so it is misdiagnosed. Some patients can go forever and never know. It happens about 9% of the time. However, when patients get a pouch - any type of pouch- Crohn’s will more likely surface. Doctors don’t know why but they suspect it has something to do with the bacteria in stool being held in the body. So the options are lose the pouch. The bowel symptoms... [ more ]
LadyTay97 Anyone near Philadelphia? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Adhesion surgery for chronic obstructions
duck11duck11
TE Marie I hope your obstruction and gas pains are over! [ more ]
GrannyJ64 Thanks for the update all sounds really positive. I am seriously looking in to this therapy! [ more ]
lcolche So, I had 20 hours of the clear passage therapy divided over 5 days (2 hours each morning and 2 hours each afternoon). I do think it did something because right after the first day, I was able to burp freely and easily - after decades of having problems often feeling like I have to burp but not being able to do so easily if at all, especially when an obstruction was coming on. Also, when the therapist would touch somewhere on one place on my abdomen where she said there was an adhesion, I... [ 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 ]
See all 5 replies...
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 ]
See all 7 replies...
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 ]
See all 7 replies...
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 ]
See all 4 replies...
J-Pouch ForumsPouchitis
Hydrogen Peroxide Enemas
CTBarristerCTBarrister
Jan Dollar My thoughts, for what they are worth. Food grade peroxide is used to disinfect prep surfaces, like you use bleach. Food grade does not equal consumable. It means it does not contain certain stabilizers. Contact with the skin can cause burns. Contact with mucous membranes can cause internal bleeding, among other symptoms. You have to dilute it for medical use, like teeth whitening. If you choose to do this, you better know what you are doing. Doctors do actually know more than us about the... [ more ]
drone3 I previously used H2O2 orally effectively for 6 months to control arthritis but for pouchitis I find Colloidal Silver much better. [ more ]
CTBarrister The real issue here is whether hydrogen peroxide enemas are harmful. My doctor told me hydrogen peroxide oxidizes in the bowel and dissipates the lining of the bowel. He told me he studied this while in Yale Medical school. Do you have other information? BTW the suggestion that my doctor is somehow a puppet whore or shill for the Pharmaceutical industry is laughable. He is 70 years old, has made his money, and is one or two years away from retirement. He could care less about pharmacy... [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
GI doctors at Mayo Clinic
RHFRHF
TE Marie Dr. Kelly Mathis is my surgeon at the Rochester, MN Mayo Clinic and my GI is Dr. Edward Loftus, Jr. My j-pouch surgeries were performed by a local surgeon and I was referred to Mayo by my local GI who said I needed IBD and j-pouch specialists. I went there for 3 or 4 years before I needed the surgery to quit using my j-pouch and eventually it's removal. These doctors are wonderful and always take the time I need to understand what was going on. [ more ]
Matt K. I had my j-pouch constructed at Mayo in Rochester. I had Dr. Cima. He is the head of the gastro surgical team there. Although, I am having issues, he is a great doctor and very knowledgeable. [ more ]
RHF Thank you. There's nothing as good as recommendations from people with first-hand experience. People who don't have this condition (myself included) can't really add anything but emotional support and empathy. [ more ]
See all 9 replies...

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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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