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J-Pouch ForumsK-Pouch Korner
Kock pouch/BCIR
D dz20
Former Member Sorry folks when I find an interesting article on my Apple lap top, I cut and paste the address and e-mail it to myself. Then I can pick up the e-mail on my PC which is connected to a printer, and print a copy. But when I try to share this web site using the Ctrl V, somehow buried in that url is a link to my e-mail. Here goes again, I hope this works. This article is written by a Doctor who has thoroughly researched and tested the efficacy of use of H2O2. Here is the link ... [ more ]
skn69 DZ20, I started eating a 'dissociated food diet' around 1990 (it was fashionable at the time) and discovered that my pouch loved it. I ate mostly animal protiens (meat, fish, chicken, sea foods etc plus some hard cheeses, soya and nuts) along with tons of raw and cooked veggies, had my fruits and fruit juices for breakfast or 4pm snack and avoided too many carbs. I gave myself 1 carb day a week where I allowed myself to really enjoy my bread, pasta etc and I maintained a happy and healthy... [ more ]
vanessavy I eat everything at 2 years out. I had a rough 2 years but now I am golden. No issues at all with my BCIR. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Traveling soon - shared bathroom with strangers
kblgalkblgal
CeeeeCeeee Hate to even mention this but does anyone ELSE besides me have no odor when they "poop"? This has been a gift to me after J-pouch surgery! I eat and drink everything. No odor! I'm not complaining, just curious! [ more ]
Sunflower70 Oh and I just realized that I should have said that I think many of us have the same fears. I freaking hate the public bathroom at work and I try use the single-person bathroom as much as possible. I worry when I go to people's houses too. But, I try to remind myself that no one wants me to be stressed out and that nice people will forgive me for stinking up their bathroom. [ more ]
Sunflower70 You may have already tried this, but I find that certain things in my diet make the smell worse. Also, is it possible that you are more sensitive to the smell than others? I'm guessing the other people will leave some smells too, because that's normal. They might even be worried about it themselves. The thing that really works after the fact is lighting a match. If you leave the matches in there for everyone, perhaps others will use them as well and it will just be the thing that everyone... [ more ]
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J-Pouch ForumsGeneral Discussion
bidet recommendations
S scallop
Blake I thought I wanted a toilet seat bidet but ended up buying a handheld Brondell Bidet stocked at my local Home Depot for $70. Took 20 minutes to install, no hot water though. Great water pressure and I can aim wherever I choose. Model CSL-70. I've had mine for 2 years. [ more ]
CeeeeCeeee I've had my TOTO Washlet for 15 years. It is beginning to show its age and so today I went shopping for a new one. Actually, I want one similar to what I have. They no longer make the model I own but one which is similar. The best news is that it is $347!!!!!! I'm not handy so I'll have my plumber switch it out for me. He put the one I have in for me years ago! Best wishes! [ more ]
scallop Thanks very much. I Just bought the Toto so I"m happy to see your recommendation. Best, Debbie [ more ]
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J-Pouch ForumsHelp! Need advice now!
Chronic Rectal Fissures, bleeding and stricture
Not your average gal!Not your average gal!
Winterberry If the fissures make examination painful, maybe you could ask for mild sedation for your pouchoscopy tomorrow. You don't want to be in pain during an exam since that might make you tense up, especially when the doctor needs to manuipulate the camera around inside for a 360 view. See if you can call your doctor today and ask for sedation. It might be a pill or an IV line, at least they will be prepared for you. You will need someone to accompany you home after sedation. I get nervous and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Post adhesion, 2 inch, small bowel resection - nausea - pukey sensation
S slouchypouch
slouchypouch Eating solids. Not sure on dehydration given the pee not being clear. I'm taking 2 multivitamins + 2 large doses of Vitamin C + Zinc per the post-op instructions. That'll change the urine content/color. Drinking liquids have been fine up until today where I actually did vomit quite a bit. I've got an appointment tomorrow with the surgery clinic but haven't been able to follow up with the surgeon who did the work. It has been a strange sequence of events thus far. Frankly, I'm suspicious that... [ more ]
Scott F I’d suggest calling your surgeon. In the meantime, are you eating solid food? Drinking liquids? Peeing enough light colored urine to be sure you’re not dehydrated? [ more ]
Raj I too had that burping and puking like feeling for a few days post op. Everytime I woke up from the bed it was as if all the air I was breathing went into my stomach. It was really bad feeling . I was given ajwain (carom seeds ) by my dietician to help with the gas and puking like feeling. I dont know if they are available where you live . But thats how my problem was solved though it took few days to go away completely. [ more ]
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J-Pouch ForumsGeneral Discussion
What's your "normal " (post j-pouch)?
MD Michele Dana
AARON My pouch is 15 months old. I go between 5 to 10 times. Mostly diarrhea. Have had Cuffitis twice. Pouchitis three times. And diagnosed with crohns. I take loperamide two to four times per day. Methotrexate, Folic Acid once a week and Remicade once a month. I’m stable at the moment. I don’t have much to complain about where the pouch is concerned other than some pain. [ more ]
Michele Dana Thanks to everyone who has replied. And yes, I'm very well aware that everyone has a different "normal" due to our circumstances. I had my surgery in 2016 and I was just curious to know how things were going for others. I'm currently taking VSL and CBD oil twice daily, I exercise 4-5 days/week and I'm pretty good about my diet. Nothing totally excluded, but try to not go too crazy with sugar, alcohol, processed, etc..... I probably have about 6 BM's daily and get up 1-2 times nightly. I have... [ more ]
CTBarrister As Michael already noted, this is a support board and if you are looking for a representative response to your question, you are not really going to get one here. The so-called normal here is probably a lot different than the normal of all J Pouches. The answer is that you will have more BMs than average for all persons because you are missing a significant portion of intestinal tract and food will go through you faster. This of course is basic physics and gravity, but the individual... [ more ]
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J-Pouch ForumsGeneral Discussion
Removing J-Pouch and rectum - Do it or Hold off?
D DeathStalker
BillV The surgeon who did my BCIR is Dr. Ernrst Rehnke who practices at the Palms of Pasadena Hospital in St Petersburg, FL. He is an excellent surgeon and the care at Palms is superior. His website is: www.bcir.com . This website contains a lot of information about the BCIR (which functions the same way as the K pouch) that you could pass on to your surgeon. On this website, you can order a packet of information that contains a DVD about the procedure and a list of about 300 people with BCIR’s... [ more ]
tf Bill, who was your surgeon and what hospital. My surgeon didn't know about a k pouch. Thanks [ more ]
n/a Deathstalker - Last fall I developed a huge perianal abscess, which I had drained and a mushroom catheter installed during an EUA (I already have an RV fistula with a seton, since '11). After the EUA, I was admitted for IV antibiotics, as it was septic. While in the hospital, I couldn't handle all the drainage from it - it was similar to an ostomy without a bag, so my surgeon suggested surgery for an end ileostomy while I was there, leave the pouch in 'til things heal, and then remove the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blockage - Probably need surgery for adhesions - gut twisting
S slouchypouch
LORI726 I could be way wrong, but I thought any time you have surgery, there is a risk of developing more adhesions. So I agree with everyone who said that no one would electively remove adhesions just because they are there. Good luck-wishing you a speedy recovery!! [ more ]
AllyKat It took a good 3 weeks before I started feeling better so hang in there. My surgeon took out all my adhesions. She must have had a reason to only take out half of yours. I would discuss this with her post op. But as long as your doing ok I doubt any good surgeon would go in and electively take the rest out. Agree with Scott. I was in pretty bad shape for months before my surgeon agreed to do removal. [ more ]
slouchypouch Hey, I'm a good 6 days post op, now, I think. I'm still feeling a bit of nausea and weakness. Blood stats in the hospital showed low Potassium after being on an IV drip with no water orally for 7 days. I supplemented potassium and extra salt today. Anything else I should be looking to boost? I'm still feeling bloat off/on and acid reflux which I suppose might be expected. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Probiotics
MIKEEYMIKEEY
MIKEEY Hi Sunflower- Thanks much much for your advice,it is so appreciated [ more ]
Sunflower70 Prior to VSL3 being on the market in the US, the closest thing was PB8, which is available at WholeFoods and is much cheaper. I took it for years when I had UC. After j-pouch surgery, PB8 didn't work for me to keep pouchitis away. I switched to VSL3, per my doctor's instructions. The studies on pouchitis used the VSL double-strength packet, two per day. But I use one and I've been pouchitis-free for 1.5 years. I skip some days too. A while ago, I did the cost analysis between VSL3 pills and... [ more ]
MIKEEY Thank you so much Raj [ more ]
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J-Pouch ForumsGeneral Discussion
Camping, HELP!
C Chevygirl88
drone3 I love camping, but the truth is it's just not practical. I need proper facilities, and I'm a hygene freak. If possible I would always choose a cabin with bathroom in the woods over a tent with questionable facilities. [ more ]
Jan Dollar I have been camping dozens of times since my surgery. Other people run off to the toilet as much, if not more, than me. When you decide to try it, I suggest just you and your boyfriend, or maybe one other couple, and avoid the big group thing. On our group outings, everyone is in a different place in regard to fitness, so we don’t do long hikes together. My boys were 6 and 8 when I had my surgery. They grew up with camping and it is a favorite family vacation. They are in their 30s now. Jan [ more ]
JHendrix Hey CTBarrister...glad to hear about your hike. I was starting to wonder if you felt you could leave your house given the killer bears and the nostril-swimming amoeba! (Said entirely light heartedly! ) [ more ]
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J-Pouch ForumsGeneral Discussion
sigmoidoscopy and balloon dilated 9mm
vallivalli
CTB23 Funny, I only had the pouchogram to check for leaks before the last surgery. Just curious as to why your surgeon also did the sigmoidoscopy as well. [ more ]
valli I am assuming the pain was pretty high because my back door has been closed since December. It's starting to ease up right now, but going in for another dye test today to make sure there are no leaks again since they stretched it. Surgery is Wednesday for my take down. [ more ]
TE Marie Did she say anything about the pus from around your stoma? I had an abscess develop while I was waiting for my take down. It was under the mid-line incision and there was some pus that my surgeon had said was "normal". During take down they discovered the abscess and I had a huge hole that needed packing while it healed for several months. I hope the pain is getting better. I would complain about it if it doesn't get better. I had my j-pouch dilated several times and there wasn't as much... [ more ]
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J-Pouch ForumsGeneral Discussion
Keeping or Getting energy
M Molina
Tobsterr1 ❤️
Raj Yeah just be little cautitous while adding dairy and nuts. There maybe some nuts that go down and some can cause irritation. Plus you can start practising yoga half hour daily in morning its a good booster for the day. [ more ]
Molina Thank you Raj, I will put all these in my lifestyle more so than before. Although I'm not a smoothie fan, I'll try add it to my regime. Classic line of 'Tired being Tired'. [ more ]
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J-Pouch ForumsPouchitis
Continuous rotation every other week?
A asdfqwer
Scott F I also think there’s no current reason to plan on permanent antibiotics. It might be worth calling your doctor to clarify. The biopsy results are unlikely to be significant, but might also be a fine time for a discussion. A single course of antibiotics may be sufficient, and is usually what gets tried first. Because it’s been going on for a while, your doctor may have an aggressive course in mind. The prescription might have been written so it’s easy to escalate if necessary, but it sounds... [ more ]
CTBarrister Don’t ever go solely by instructions printed on a medicine bottle. Call your doctor to clarify how you should take any medication if there is any question. It may be premature to be on permanent antibiotics if you are relatively asymptomatic. On the other hand mild pouchitis can deteriorate over time if you don’t stay on top of things. Now that some inflammation has been seen you should be scoped more regularly as that will determine how your treatment should be adjusted over time. I am on a... [ more ]
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J-Pouch ForumsGeneral Discussion
may have aggravated my hernia repair of 2 years
PouchomarxPouchomarx
Pouchomarx I do not have any other symptoms except some soreness and tightness [ more ]
Pouchomarx Thanks Jan, I saw a new general surgeon today that I went to see about an eventual gall bladder removal at some point down the road. Since Remzi left Cleveland he stated to get in with Dr Dietz at University who is head guy over there and trained under Remzi. He referred me to this general surgeon and he was able to get me right in. Surgeon at Cleve Clinic told me earliest I could get in is 2 months..lol. He stated that the area I was concerned about is of no concern. He said he can feel the... [ more ]
Jan Dollar So how much does it extrude when you cough? You can also hold your breath and bear down to feel it. A minor protrusion is nothing to concern yourself about. You do not mention any pain or other symptoms. I would not get ahead of yourself about a repeat repair until you have it evaluated. Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
OBGYN in the Houston Area
G Gom
Gom Thank you. I will go ahead and get an appointment with him [ more ]
Mallory Not sure but I bet he does. He knew my surgeon well (Dr. Eric Haas) but I was pregnant after my ostomy takedown. Look up the Stolen Colon blog. She’s had 2 babies with her ostomy. [ more ]
Gom Thank you Mallory and congrats. do you know if he has dealt with Ostomy patients as well? [ more ]
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J-Pouch ForumsGeneral Discussion
Getting more protein
B Bubba1028
TE Marie PlantFusion - vegan protein powder helped me when I needed it. It's for sale on Amazon and such sites plus retail at health food stores. It has 21g protein per serving. I use unsweetened vanilla almond milk to mix it in plus make it a smoothie by adding various fruits & veggies, kale and a banana. Whatever you like as this is a good way of getting in those needed fruits and veggies too. My favorite flavor is chocolate and it's 120 calories. [ more ]
CTBarrister Eggs, nuts, and quinoa. Protein shakes adding peanut butter. Edamame. [ more ]
Eldoza Whey protein shakes are usually a good replacement for me when I am trying to cut back on meat. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anal leakage
AngiebAngieb
Angieb Perfect Thanks Scott🙂 [ more ]
Scott F I take exactly the dose on the package, mixed with 8 oz. of water. For years I used just sugar-sweetened Metamucil, but I now (for fewer calories) mix a half-dose of Metamucil with a half-dose of original Konsyl (which is just plain psyllium husk). My mix is a little fussy, since a measured dose of Metamucil is a different amount than Konsyl. I’ve considered eliminating the Metamucil entirely, and going to just Konsyl, but unflavored psyllium isn’t very pleasant. You might find that you do... [ more ]
Raj ❤️
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J-Pouch ForumsHelp! Need advice now!
Fistula in Ano - Pouch advancement surgery
S SA123
Ljz LC, I was concerned with infections and became bit of germaphobe- tried to avoid sick people, vigilant hand washing, vitamin C. That said I taught kindergarten special needs and First grade during that entire time. Only one bad bronchitis episode and that was because 16/30 of my students were sick for weeks, then me. I do believe being with kids help boost immunity so if you’ve been around your daughter and other kids that’s an advantage. Also, I had spleen removed in 2007 so feel my immune... [ more ]
BillV If your attempts to correct the problems you are having with your J pouch are not successful and you decide to have it removed, you may want to consider getting a K pouch or BCIR. These similar procedures involve creation of an internal pouch with a button hole size stoma located below the belt line. The pouch is emptied at your convenience 4-5 times a day with a small catheter and the stoma is covered with a small absorbent dressing. With these procedures, you can wear the tightest... [ more ]
LC Thanks Laurie! I don't know if the protocol is different for fistula treatment vs UC remission but did you have problems with infections while you were on Remicade? That was one of my doctors' concerns since I have a daughter who is at the age where she gets sick a lot (but its getting better) and I also work in a research lab with bacteria, yeast, and viruses (although not with human infectious agents for now). [ more ]
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J-Pouch ForumsHelp! Need advice now!
Prolapsed Rectum
T trisha1234
Ljz Trisha, I’ve had my pouch just short of 5 years and have had a prolapsed pouch for 3. It was worse, protruding significantly, but has gotten better. I try not to strain, use warm water to help me evacuate, and have had some improvement in overall frequency by following the FODMAP diet. Also, I had a pouch advancement, mucousectomy and removal of a flap that was also prolapsing 2 years ago -Things somewhat better, prolapse not every day nor as severe, but only real option is removal of this... [ more ]
trisha1234 Thanks! [ more ]
Scott F I don’t know of any fix for prolapse without surgery, but straining on the toilet should be carefully avoided so it doesn’t worsen. Keeping your stool soft at all times will help make it easier to prevent any straining. [ more ]
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J-Pouch ForumsGeneral Discussion
Diet advice?
MynewbuttMynewbutt
Mynewbutt Update on the diet. I am slowly eating more and more different types of veggies. No spicy food still. I'm not sure I will venture down that road for a long time. I have not had any problems with veggies so far. I might go to the bathroom one more time a day if I partake in a good amount that day. Carrots and onions are the only things that dont agree I think. I have not done too many beans of any kind because I don't want gas too bad. As a result my skin has gotten a little better. Not... [ more ]
Eldoza I swear my magic elixir is green smoothies. Something about the chlorophyll in the greens I feel reduces inflammation. But going on a liquid diet for a day or two always gets me back on track and feeling better. A green smoothie is a smoothie consisting of a green leafy vegetable like spinach and kale, and a sweet fruit of your choice. [ more ]
Mynewbutt Nice advice guys. i am going to get more potassium in my diet. I eat a banana almost every day but I am going to get sweet potatoes in there too. Not sure about the wheat grass but I have been thinking of getting some supplement powders. Namely moringa and chlorella. Has anyone tried that kind of stuff? The benefits are supposed to be really good but everybody is trying to sell you something right. [ more ]
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J-Pouch ForumsGeneral Discussion
eating popcorn
G gottswood
Bobish Fwiw I'm totally fine with popcorn too.. but then I eat everything, and not slowly. Chewing for me is also optional (fortunately) lol [ more ]
lablover My hubby eats popcorn. [ more ]
Aimc Hi Gottswood, I have eatin popcorn once since the UC and j pouch. That being said, I ate it at a movie a couple of weeks ago. I am 3 months out from takedown. I ate way more than I should have or meant to, because I love movie popcorn and it is addictive. Anyway, I was fine, no I'll effects. Lucky me. To be on the safe side though, Google hulless popcorn. I have seen it in the grocery store, but have honestly never tried it. It might be the safer thing to try. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Partial obstruction - what causes this?
S slouchypouch
slouchypouch Thanks all. They cut out a a couple inches of small gut that was trapped in scar tissue (adhesions). Oddly it was up near my stomach and was unrelated to the prior ileo site or the j-pouch area. I guess I just scarred up in the entire abdomen after my j-pouch was done long ago. 5 hour surgery laproscopically but they ended up having to open me up at the end anyway.. Either way, I ought to be out soon. It feels just like takedown did 14 years ago from one little gut resection. [ more ]
Scott F I’m glad they seem to have figured it out, Slouchy. Bumbling can look a lot like bumbling, too. [ more ]
JulieBaker So happy you are getting somewhere with your care! That makes a lot of sense. Hopefully it’s a quick fix. I believe it is fairly superficial surgery (Not too scary)? [ more ]
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J-Pouch ForumsGeneral Discussion
Self dilation
DisemboweledDisemboweled
LC How often do you get tight strictures? I have anal strictures but mine is complicated by a fistula. I was told to try the self dilation but I've never been able to do it because of the pain (I think because of the fistula). It seems to be a 2 year cycle for me so I prefer to just go see the surgeon when I feel the stricture developing for a dilation under anesthesia (FUCK NO to an office dilation). My surgeon has never suggested an office dilation because they hurt too bad and its good to... [ more ]
Momma There are some tools. Look up Hegar dilation, but do check with your Dr first. [ more ]
GraceB How do you self dilate? [ more ]
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J-Pouch ForumsPouchitis
First healthy me in 18 years
A Art
AllyKat I loved xifaxan! The best, but I got trush on my tongue and my Dr took me off after 2 1/2 years. It was down hill fast from then on. Never will go on antibiotics again. I think it messed my flora so bad my pouchitis came back worse than ever. I almost lost my pouch. i hope you can continue in it. I don’t mean to scare you. I really loved that drug. [ more ]
TE Marie Thanks Art. I had a bunch of problems with my j-pouch so had to have it removed. It is good to see someone getting over a nasty problem. [ more ]
Art Salis has website where it lists Xifaxan along with about 8 other of the drugs they produce; each one associated with various forms of e. coli strains and you might want your doctor try a sample of your pouch for specific bacterial variations, and whether some of these other drugs could be effective against bad gut bacterial infection...... [ more ]
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J-Pouch ForumsGeneral Discussion
Redo or Remove
M Momma
AllyKat Omg Jeff’s Mom, im so sorry he is still having issues! Momma, your son is young. Trust Remzi and good luck. [ more ]
Momma Sounds like a plan [ more ]
Jeffsmom Kim! Yes we could have! Our apt was at 11:45 I think. Then Jeffrey came home and my husband and I went to the Met Art Museum for a little while. Then we met some friends from Japan who are here on vacation. Let’s get together soon. I could meet you at Starbucks for coffee. dianne [ more ]
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J-Pouch ForumsGeneral Discussion
Post takedown patulous anus
P Pouch921
Raj Hey thers you've been doing great so far believe me . Its a good thing that your stool is well formed rather than all liquidy . Drink enough just to stay hydrated . Its bery normal to have a strained anus for initial 2-4 weeks. Its eases with passing days. I too couldnt clear up in visit in initial days. Even when I used to get a good urge only a little would come out and my muscles would just contract back making it very painfull . As soon as I'd get back to bed the same urge would come... [ more ]
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J-Pouch ForumsGeneral Discussion
Is it normal?
NativeNative
Raj Thats great news. You should give yourself time. It was a big operation and you were on ileostomy for so long your muscles just need their time to adjust back to the new normal which they will eventually. Just stay away from the medical shit as you got the operation to get off them in the first place. If you visit a doctor he'll prescribe a medicine to ease you up else you wont find him usefull but you gotta know for yourself if its absolutely necessary ( just a thought XD ) . A probiotic... [ more ]
Native My GI did a scope today. Pouch looks great, no pouchitis, no stricture. Said the cuff was just pretty inflamed and should calm down over time but is putting me on hydrocortisone supp for a week. Said maybe canasa after that if doesnt improve much but has been improving over last couple days. Also recommended VSL #3 that I know quite a few folks on here use. Anyway just an update. Maybe I should have waited since its so early but that straining freaked me out a little ha. Thanks for all replies! [ more ]
Aimc Wow, sorry to hear things are not getting better for you. To thin the thickness of stool, you can cut back on the white rice, pasta, potato's and like starches. I think alot of us use metamucil with good results. If you do have a stricture it's prob. best to have a more watery stool until the GI or surgeon can dilate if need be. Unfortunately for all of us, when the pouch is new it mostly trial and error until we find what works for us. Thanks for keeping us informed and good luck with pouch... [ more ]
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J-Pouch ForumsHelp! Need advice now!
surgery
tftf
tf Thanks for your response. I am from Pa and my surgeon is from Philadelphia. My surgeon isn't the problem he is very good and he did my Jpouch surgeries. He just brought up this thought to think about because of going in and repairing the hernia. He said that if my quality of life is not good I should consider the reconstruction to move pouch down or go back to the bag. Jeff's mom, wow ur son has been through much, God Bless you. This is not easy. I am 62 so older I get the harder it is on... [ more ]
Scott F It sounds like he’s proposing pouch advancement surgery, removing the rectal cuff that’s giving you trouble. This is generally hand-sewn, which is a very delicate procedure. This can be quite successful but should only be done by surgeons with plenty of experience at it. Combining it with the hernia repair is likely to be fairly straightforward, and does save you a surgery (*if* you choose to do both). Questions for him: How experienced is he at pouch advancement surgery? Is he planning a... [ more ]
BillV If you are giving thought to a K pouch or BCIR, you should have a consultation with a surgeon who does them. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Belly pain and gas bubbles
SeirlaSeirla
Deve Any kind of green is usually the most balanced for energy/pain relief. Reds are better at night for sleep. White gives me anxiety attacks, so avoid if you're prone to that sort of thing. The country of origin listed is usually non sense like Thai or Vietnamese. All of it comes from Indonesia. [ more ]
Ruthie2015 What strains of kratom have you tried and had good luck with? [ more ]
Ruthie2015 Re: Belly pain and gas bubbles [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Jpouch and pregnancy
E Eagler123
Bubba1028 Congratulations on the pregnancy - I assume since this post is a few months old that you're well on your way to either having the baby or will be having it soon. For those who have struggled with infertility as a result of surgeries and such - I'm so sorry. I recently found out I'm pregnant and am in my third month. I feel like I have the start of an obstruction and I'm not sure what to do. My GI wants me to go to the ER, but I don't know what they would be able to do for me. I'm not as bad... [ more ]
ljk Unfortunately I have. I have also done IVF, even used an egg donor in which I had 12 embryos and 4 transfers. Each transfer was a negative result! Which ripped my heart out and sobbed for months. this was when i had my stoma, the checked all my levels every time. I think its not about quanity but is all about the quality. I really don't think my donor had the best eggs 30k later I have nothing ! [ more ]
JackieNY422 I would consider consulting with a reproductive endocrinologist, especially if you aren't getting periods on your own. I was only able to get pregnant through IVF due to scar tissue on my fallopian tubes from the j-pouch surgeries and an irregular cycle from PCOS (unrelated to my GI issues). It's worth visiting the real experts to assess your fertility. [ more ]
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J-Pouch ForumsGeneral Discussion
Referral for GI doc in western CT
AJ Auntie JoJo
Bubba1028 I go to Dr Ginsburg in Hampden and he has a office in Guildford as well. He’s amazing. I went to three doctors before I got to him. He helped me through remicaide, a trial drug and finally my j pouch (with a surgeon). He’s keeping me on track with everything from my vitamins, my bone density tests (i have decreased for my age bc of all the pred), working with my arthritis doc, and now I’m prego and he’s helping me through that. Not sure how far it would be for you, but I travel over an hour... [ more ]
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J-Pouch ForumsFAP Forum
uveitis
mariaemariae
Al Wilk Psoriatic Arthritis . [ more ]
mariae what is is psa? I hope you keep well too and I will defo keep on top of this uveitis take care thanks for the info very much appreciated. maria [ more ]
Al Wilk We are far more prone to get Uveitis than the general population . I have Psoriasis and Psa which are also risk factors . Steroid eye drops will help . Good luck and stay on top of this . [ more ]
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J-Pouch ForumsPouchitis
Microbiome and pouchitis
JoanneJoanne
Auntie JoJo My understanding is that as the pouch matures, the cells in it morph into more like cells of the large intestine and therefore it responds to food similarly. [ more ]
JulieBaker Hi, thanks for the link on the book. I was thinking about the same thing, treating the pouch like the colon for the microbiome. However, does that tissue take to the colonization like the colon? From what I’ve researched it seems the tissues are not the same from small intestine to colon and so I didn’t know if it would colonize like a colon. Anyone with luck on this? [ more ]
Clairesmom This is such a great question, I wish someone had answered you. My adult daughter will soon have her third j pouch surgery and this is something I have started wondering about for her. I will pass on your observation that more vegetables and less dairy and gluten helped you. Thanks! [ more ]
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J-Pouch ForumsGeneral Discussion
14 years later and still butt burn
Mema 1Mema 1
Wanna Be Healthy Calmoseptine - the only answer to butt burn. I use it several times per day. [ more ]
CTB23 I have a Coco bidet. I bought it through the company. It's the complete one, not the attachment style. It has temperature controls for the water, a heated seat if you want, and a dryer as well. We did have to have an electrician install an extra outlet for it. [ more ]
Claudia S Since my October input, another product I use for painful irritations Which included pouchitus is an OTC lotion called Tronolane. It 's works like Prep H but it takes care of the pain an discomfort immediately. And my go to (bottom burn) OTC standards are still Desitin, A&D , (system slow down)OTC Metamucil & Loperamide 2mg. Hope this helps! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
endometriosis or pouch
duck11duck11
LoveLife Thank you, Lidia, for sharing your story. It makes me even more convinced not to go for any surgery solution at this point. [ more ]
Lidia Hi guys, I know this is a few months old but I wanted to share my experience for anyone considering laparoscopy or surgery with endo and j-pouch. I’ve had the pouch for 14 years since I was 15 and I’ve had no problems in that area which is amazing! However since the surgery I began to get a lot of pain around menstrual cycle. Initially it was a back and forth game from Gyno to colecrector surgeon, various hormone treatments etc. Being told it was scar tissue and adhesions, it was too... [ more ]
duck11 Hi Lovelife, My husband and I did IVf treatments and the pelvic pain started about 6 months afterwards. At first, it was only mild after sex, then with periods and finally evolved to all the time and the pain intensity went through the roof. I finally saw a good OBGYN who diagnosed the endometriosis but it took FOREVER. "it's just your pouch", "it's just your scars" etc. Everything gets blamed on our Jpouch surgery like a scapegoat. I really had to push that something was wrong. Like you, I... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
ambien
C colitisresearch
kta I use it and I am fine. [ more ]
jeane I use melatonin but I also have odd dreams when using it. [ more ]
TE Marie I use temazapan as needed. I had a problem with ambien with my j-pouch. I needed to use the restroom more at night than before I had the surgeries. I would fall asleep on the toilet and had a bad fall from it. I woke up when my head hit the tile floor. If you don't have a problem with it now I don't see how it would be different. Hopefully you won't need to get up as often but in the beginning you will be going to the restroom more often than with a trained j-pouch. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Multiple accidents throughout the night
SBleederSBleeder
Bubba1028 I agree on the baby mattress liners. You can get some from Amazon- they use them for elderly incontinence, under chairs or even in hospital beds for easy clean up if you have an accident. I think I ordered a few after my takedown. I keep them handy if I get sick- if I’m having a gastro big I find I leak easier. When my body just isn’t working right bc Im sick, all sorts of leaking happens. Stay strong!! 🤛🏼 [ more ]
Winterberry I think this is normal so soon after takedown, two weeks is a very new pouch. It will get better. Your muscles and new pouch are learning how to live its new life, learning what to do. Remember that your pouch used to be your small intestine, expected only to absorb nutrients. Suddenly it's expected to be a colon and hold stool. Give yourself time. For now, try not to eat big meals late in the evening, or eat less fibrous foods and vegetables for now, and have more pasta, basmati rice,... [ more ]
Former Member I had an ileostomy for many years before J pouch surgery, I've never done or been advised to do Kegels, not saying it won't help your situation, just don't think the length of inactivity makes much of a difference. Since takedown surgery, just before being discharged, my Surgeon said I can start the Imodium immediately, He also said, he's wont suggest how many Imodium tablets to take, as it will depend on the frequency of BM, so best I work it out myself, as to what works best. He did stress... [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Gall bladder
R RMiller
Bubba1028 Good luck- let us know how it goes! [ more ]
RMiller I do, and sludge. Saw a surgeon this morning and they are setting me up for the laparoscopic procedure. I hope this eliminates the nagging stomach ache. Thanks to Bubba1028 and Alock for your responses. [ more ]
Bubba1028 I had mine out about 8 years ago, and only had my surgery recently. I know they say it impacts how your processs fatty food but I never noticed a difference. Do you have gallstones? [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
I need a new doctor
tenaciousCtenaciousC
Native woman I started seeing someone new a few years ago when we moved. I see Dr. Jeanne Yu a colon surgeon I love her personality and I feel she is detailed she even came to see me in the hospital last month when it was not colon related. Dr. Yu is located in Sacramento on 29th street. ( 916) 231-1050 [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
New normal
MynewbuttMynewbutt
JHendrix Hey Mynewbutt. I'm wondering how you're doing now? [ more ]
Mynewbutt Thanks Aimc. I am actually not doing all that bad. There are just those times you wish it was steady as she goes but it's not. I'm rolling with it though. There is a new challenge with in each day...keeps it exciting. Lol. I really like to hear the progress at different stages from those of us in this situation. [ more ]
Aimc Brett, Im sorry you are having such a hard time. My surgeon also put me on a very low fiber diet. Less than 13 grams a day, also called low residue. Avoid caffeine and carbonated beverages if possible. Following this diet is suppose to decrease volume and bulk stool. I also use lactose free milk. Lactaid is the name brand. It's not bad. I wish there was a magic bullet for us, but I guess we just have to go through this. I hope it gets better for you soon. Aimee [ more ]
See all 9 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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