J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsK-Pouch Korner
At 34 1/2 years out with my Kock Pouch, I sleep all night long and don't worry about it at all. I can easily go 12 hours at night. In the beginning, I couldn't do that though. It all takes time, just stretch that pouch out like you are told in the beginning. [ more ]
I usually go to bed around midnight or 1 am. If I am working the next day I get up at 7:30 am. I usually go to the bathroom around 11 am. I have been on Ativan for 5 years for sleeping issues due to anxiety and IC. I sometimes wake up if I am on my back because then there is to much movement in my pouch but otherwise I sleep through the night good. [ more ]
Well, I have an ostomy now but am wanting to switch over to a k-pouch for many reasons, but one being sleeping through the night. Most people seem to say the sleep better with their k-pouch than with an ostomy or j-pouch (probably if it's failing) and definitely better than with IBD. I usually get up once to empty my bag, not because I need to, but because I wake up and think "might as well" since it's more comfortable to try to fall back asleep with an empty bag. I would think a k-pouch... [ more ]
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J-Pouch ForumsK-Pouch Korner
Watermelon gives me intestinal blockages, so I don't eat it. I love it, but it isn't worth it to me. It's the only thing, I can't have. I eat pistachios too, love them! I also love sunflower seeds....my 2 favorites. [ more ]
I eat pistachios but not almonds, almonds give me great gas. Pistachios I can eat butt loads of the things. Meat skins I eat. I was nervous until I saw a fellow BCIR buddy eating chicken wings. All down hill since then! Stomach acid eats the meat skins unlike skins on fruits. [ more ]
I love watermelon and don't really want to give it up if/when I get a k-pouch! It definitely bulks things up, which is why I eat before going out! I'm not so sure it would cause a blockage though, unless you don't chew too well or eat the whiter part. Honestly, so far nothing the nurses told me to stay away from has caused me any problems. I haven't tried meat skins or nuts though. [ more ]
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J-Pouch ForumsGeneral Discussion
By the way, has anyone heard of using reglan to stimulate bowel movements when ones too nauseous and then becoming dependent on it? I'm off it now and bowel movements have significantly decreased...I'm just so paranoid the nausea and vomiting will return in a few hours. [ more ]
Hey everyone, Thanks again for the responses. I'm still stuck in the hospital but no ng tube! Trying to keep food down with reglan. It's semi-working but my stool is still bile green and very watery. I'm going literally every 1.5 hours. Had a ct done and the team found some inflammation around the closed stoma site. Just so sick of the hospital and the 20+ bathroom trips I know everyone says it gets better, so I guess just gotta wait. [ more ]
I had the NG tube too. It was inserted about 3 days after takedown. I found it to be torturous. I honestly was ready to give up at that point. After what the prior months had been and then the complication after takedown. Once that tube was pulled out it was the turning point. It only got better. Today 4 months out I'm living my life, doing and eating everything. I go 8 times in a 24 hour period without any meds or pain. Good luck and be patient. You'll only go up from here. [ more ]
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J-Pouch ForumsHelp! Need advice now!
My surgeon was the one who initially gave me a catheter, because after about 4 weeks from the initial surgery, i was so blocked up and miserable. I couldnt get enough out to get much relief. The catheter was a godsend to me. There is no real danger in using a catheter as long as you use lubricant, insert gently, and only go as deep as needed. With you having some burning down there, then using the catheter may irritate things. I try not to overuse the catheter because it does irritate things... [ more ]
Thanks for the advice, I will use some of your tricks and see if it helps. I have been reading about catheters and j pouches and like the idea of them. I'm going to talk to my doctor first. I'm worried about the safety of them and if just certain people should get it or its safe for everyone. Did you take it upon yourself to get one? Also I'm wondering about when my skin will "toughen up" because I'm really dreading BM's right now due to the burning and uncomfortableness I feel afterwards. [ more ]
One thing that is needed to learn with a j pouch, is to try anything and everything to see what works. Just dont sit and strain. Try something different. I noticed that after taking a long hot shower, the muscles "down there" are more relaxed, and it is much easier to eliminate. If you have a hand wand, you can stand in the tub, and spray hot water, and eliminate right there. I know people may get squeamish doing such things in the tub, but what is important is getting relief and feeling... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
I didn't stay in the hospital. They wanted me to contact my GI doctor on Monday. But I am still drinking and resting all day long. I don't work. I am a stay at home mom. Today I am a little better and have decided to eat some turkey and dressing. It is already put together and not real spicy. I think it is Hormel. I am going to add salt. The only water I drink is Smart Water with the electrolytes in it. I think it might be getting better but my goodness explaining the hospital what a jpouch... [ more ]
Hi Grandmaof1, How are you doing? Have you been able to keep anything down since you posted? How about some chicken broth? You need the salts and the hydration...Add 2-3tbls of rice and see how you do...apple juice could help too and ginger ale...keep us posted. sharon [ more ]
Don't think it would be a bad idea to get admitted to the hospital for a few days. They can keep the fluids running in you and also supplement with other nutrients. It might help you get over things faster. wishing you feeling better soon. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Well good for her! I'm really glad it isn't holding her back too much. I think they are letting him go home tomorrow. Everything is looking up today. The only thing that is still a little "off" is his ostomy bag is pretty much pure green liquid. They are saying its supposed to be a applesauce like consistency but everything is coming out total liquid with just pieces of food in it. I am emptying the thing like once an hour. Is this typical? They said they didn't care what color it was but it... [ more ]
Glad to hear today has been better and the pain is more controlled. My daughter is doing well except this infection has been tough to get rid of. The abscess got much smaller after 3 or 4 months and they pulled the drain. Several months later, her CT looked normal so they stopped the antibiotics only to go back in the hospital, put back on antibiotics for 3 more months, MRI looked clear, stopped antibiotics, back in hospital again. So she continues on the antibiotic and feels well. I think... [ more ]
Thank you for the replies guys. I'm sorry to hear your daughter had to go through that too sweetpea... I can honestly say at this point that I know how that must have been. Is your daughter fully functional and recovered now? I will give him the advice on the food... I am having a hard time getting to him to eat as he isn't really hungry and seems to get full really fast. We weighed him today and he has lost 20 pounds in the last week. I too agree that I cannot imagine someone going through... [ more ]
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J-Pouch ForumsGeneral Discussion
I agree with the others that it is a very personal journey in terms of diet. I kept a food diary with times of day and what I ate/drank. It was very helpful at first. There were things I could eat in the morning, but not at night. [ more ]
thank you jan. i missed that... [ more ]
thank you jan. i missed that... [ more ]
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J-Pouch ForumsGeneral Discussion
My GI doctor just prescribed Hyoscyamine (Levsin is another name for it) and that is sure helping me a lot with the spasms. I wish he would have given it to me earlier. Now if I could just get rid of this darn flu bug. OMG it is kicking my butt. [ more ]
I guess I am one of those who need Imodium long term. I have tried to stop it, but the frequency is high enough to interfere with normal life. But, I do need less than I did during the first few years post op. No way am I plugged up, since my frequency is 6-10 times a day even with 4 Imodium a day and daily Vicodin. I do agree that we should not be trying to achieve the same low frequency that folks with a healthy colon enjoy (once or twice a day). I think that just promotes bacterial growth... [ more ]
No, you are not alone, quit taking this crap as soon as you can, it can be helpful at first but, Unless you absoluty have to take this crap get rid of it. It takes time, but your body will adjust, no, not overnight, but it will make adjustments. I have always wondered why anyone would want to "Plug" up the system & hold that toxic waste inside, do ya think it might be the reason for some infections?? remember, a clean pouch is a Happy pouch!!, If you have to empty, empty. I realise that... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I wonder if you are developing antibodies against the Remicade. It happens.... Jan [ more ]
I used to take Remicade for UC, but I stopped right before surgery to remove colon. I am in hosptal now for takedown. I have been off since August. The Remicade would make me feel like I was recharged, except the first day because I would take a Benadryl for precautionary allergy reaction. I would sleep for hours after the infusion. Are you taking too much Benadryl perhaps? I ended up tsking 1 indtead of 2 benadryl and 2 tylenol to help with fatigue from the benadryl. would definitely... [ more ]
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J-Pouch ForumsGeneral Discussion
6 weeks is early.. I was still on 80mg a day of Oxy that time frame. My life is still rough but it sucked big time for about 4-6 months post op by far. [ more ]
Maybe they are thinking the staples that are holding your pouch together are being rejected by your body? Long shot, but anything's possible. Otherwise, I'm with the others, it's your own guts, so your body ain't rejecting that part at least. Maybe it's just the nerves in the area that were cut/touched during the op causing the pain still when the area moves around/has pressure placed on it. Sorry to hear about how it's going regardless. That just sucks. Wishing you well. Ad [ more ]
I think this is a correct way to frame the issue. The body does not reject the J Pouch as it would a transplanted organ which is foreign tissue, since the J Pouch is made of your own tissue. What is rejected (perhaps only initially) is the functioning of the J Pouch. The body does adapt to it and the J Pouch itself adapts, expanding to accomodate its new role over the course of time. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I just went to pain management finally to ablate/spinal block nerves. Helped a great deal and my doctor has a lot of jpouch patients that he helps. [ more ]
I've taken amitriptyline for years to prevent migraine headaches. It did cause me to gain weight in the beginning, but no to much anymore. It has never caused hair loss for me, I think something else must be causing that. I do think the amitriptyline has helped me have fewer problems with my pouch. [ more ]
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J-Pouch ForumsGeneral Discussion
The bidet has been a huge blessing in my butt burn. [ more ]
Bidet - I had a hand sprayer thing attached to the plumbing of the toilet. Also cavilon cream - it stops the digestive acids burning the skin. [ more ]
Do you take fiber? I find one teaspoon of Metamucil daily absorbs most of my acid. (Two teaspoons a day would absorb all of it, but would also give me more BMs, so one a day for me is enough.) [ more ]
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J-Pouch ForumsGeneral Discussion
Tom, Wheat gives me a lot of gas too. I can handle a little of it but switched to wheat free cooking for the most part. It just feels better. I use Questran to bind up acids in my output. It also thickens the output. I keep meaning to try Metamucil but I have not gotten around to it yet. Bananas work but sometimes gives me constipation. Have you started a food journal yet? [ more ]
i'm in the pumpkin camp too - easy on the gut, nutritious, delicious. I either make soups or roast and add to salads, toasted sandwiches, yum. [ more ]
Nope, not for me. Your mileage may vary, of course, but for me fiber's been a real lifesaver. Other fiber supplements may work just as well, but I'm too lazy to experiment when I've already got something that works. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
I'm glad your nights are getting better. I only had the one really rough night with gas and needing to use the restroom frequently. Otherwise I either get up one or twice to use the restroom (which I did just to urinate before the surgery), or am able to sleep through the night with gas that semi awakens me, but I can go right back to sleep. It's so early since take-down, and I feel great about it so far, so I'm really looking forward to the future as I believe it will only get better. Take ... [ more ]
nice dove, the pepto works well for me and no wheat reduced gas a lot. im not as risky or active as you but my days are good and nights getting better. my doc kept a 2 cm cuff as well noting its benefit on continence. i think were going to do well and we need to concentrate on the good and let the no so good slide. ive learned a ton on here and i am starting to throw more at my pouch. i cant heal well on just toast. lol. i just eat around the clock and get up if i have to empty. [ more ]
nice dove, the pepto works well for me and no wheat reduced gas a lot. im not as risky or active as you but my days are good and nights getting better. my doc kept a 2 cm cuff as well noting its benefit on continence. i think were going to do well and we need to concentrate on the good and let the no so good slide. ive learned a ton on here and i am starting to throw more at my pouch. i cant heal well on just toast. lol. i just eat around the clock and get up if i have to empty. [ more ]
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J-Pouch ForumsGeneral Discussion
I just wanted to stop in and say "sorry you are having such a hard time." It sounds like you've done all the right things and gotten expert opinions. You can always get the surgery done if you feel like your daily life is being affected or if things get worse. When I was deciding whether to do a jpouch or continue with UC medications, somebody told me something along the lines of "You can only make decision based on what you know at the time. Even if something else comes up in the future (in... [ more ]
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J-Pouch ForumsGeneral Discussion
Akk, I had one bout two months after my take down. My surgeon had me on a suppository that my gi thought caused the bout. But after that third bout, none since. So glad. Manchester, my hat off to you-six attacks! Whew. [ more ]
So far they have done every test known to man. All of the tests came back fine so they think that the stress of the surgeries is what is causing the pain. They put me on anti anxiety meds to control the stress on my body which has been helping so far. Pancreatitis is excruciating painful to have! [ more ]
I had 6 bouts of real serious pancreatitis over 3 years after J-Pouch surgery. After so may tests my surgeon finally concluded that Flagyl and Cipro were the cause. After stopping those 2, I haven't had an episode in 18 months. [ more ]
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J-Pouch ForumsGeneral Discussion
As I understand it, pouch excision is difficult when the pouch is attached via scar tissue to it's surroundings. The more embedded the pouch, the harder it is to remove, as the surgeon has to take extra care not to damage the surrounding organs. [ more ]
I think most people who have a pouch excision also have the rectum removed and everything sewn shut (barbie butt) and that IS difficult to recover from. I had pouch excision, rectum removed and a k-pouch created instead of a perm ileo. It was a very difficult surgery but mostly because of the k-pouch. The rectal removal is difficult in its own way and its rough to sit for a while, some people have delayed healing because its a difficult site to close. Is it worse than a colectomy? Hard to... [ more ]
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J-Pouch ForumsGeneral Discussion
Agree. Been on Celexa 40mg for about 20 years, 10 of those with pouch. No problem. [ more ]
I take 40 mg per day of Celexa. Have had no issues with it at all, as it relates to my pouch or not. [ more ]
I'm assuming they started you on 10 mg. An upset stomach is very common and it does go away. They started me on 10 about a month ago and I couldn't see a difference in my anxiety and depression so they had to move me up to 20. 10 and 20 are very low doses. I think the highest is 40 [ more ]
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J-Pouch ForumsHelp! Need advice now!
I've had an NG tube at two different times for 3 days at a time and I was scared as well the first time because I didn't know what to expect. It sucks going in and coming out but it helps so much. Way better than throwing up with a fresh incision. I was pretty uncomfortable while it was in but with the help of anti anxiety pills it was tolerable. Remember it will come out and isn't forever. Really important to move around a lot to get things moving. [ more ]
I threw up today and now they want to put ng tube in. I am so scared. Is it really painful? [ more ]
Thanks, that makes me feel better. I am going for a walk now! [ more ]
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J-Pouch ForumsGeneral Discussion
fq, what a great reply!!! i take comfort in ever word. may i ask one more question of you folks. i remember after my j-pouch was created it was hard to sit and my anus felt bruised/sore a lot but eventually faded. now after my takedown that feeling is back. im assuming that now because its getting used a lot the bruised/sore feeling is normal and it too will fade. am i correct? [ more ]
the best thing to use for self-dilation is a thin candle. However, i would NOT suggest doing this without letting your doctor know first, especially since they think everything looks great and you have NO stricturing to begin with! So why self dilate when you have no stricture??????? I don't see the point in that at all! i actually had a stricture that was dilated in-office a few times, and finally stayed open. i STILL have some issues with straining and strained a lot more in the first few... [ more ]
Wow, that would be wonderful! Ok, I'll tell you what I used...a tapered candle (still inside it's plastic wrap) that I put saran wrap around each time and put lots of lubricant on. That way if for some reason it would break off, the saran wrap would hold it together. It was the perfect size. I figured if the doctor was going to put her finger up there, this was about the same size. I never went past any farther than a finger's length. The first few times (I would do it at least once a day),... [ more ]
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J-Pouch ForumsGeneral Discussion
Funny enough it looks like ulcers! I have been taking baths with sea salt, soaking nightly and have started using a drop of neosporin on it...still burns. Will make an apt with Doctor after I have had my bloodwork done. Sharon [ more ]
Please get to a doctor ASAP, that doesn't sound good at all. Maybe you've been so tired as your body have been trying to fight off an infection. You have had surgeries on your abdomen lately. [ more ]
I am definitely thinking you should be checked for an abscess. Don't let it get worse. [ more ]
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J-Pouch ForumsGeneral Discussion
Hi thanks for your replies :-) I ended up being admitted to hospital with this because i had really bad dyhdration and had to be put on a drip, i was then taken down to theatre and was put under which they found i had pouchitis and my pouch had narrowed so they stretched that back open... Im doing really well now :-) [ more ]
Sally, What colour was the Gatorade? That could change the colour too...salmon or tomato soup would make it reddish or light brown...Blood is stool can make it black but so can other stuff that we eat with food colouring like licquorish or blue jujubes. Mel, Have you eaten any raw foods lately like sushi? Undercook chicken or meat? Could be pouchitis or it could be something else like a nasty bacteria from foods or some new meds that you have taken...you need to be very careful because... [ more ]
Can salmon or tomato soup cause black tarry stools from a J pouch? That is the only thing I had besides gatorade yesterday? [ more ]
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J-Pouch ForumsGeneral Discussion
pkitty, I answered this question in the other thread you posted in the pouchitis forum. I don't think there is any need to be posting the same thing twice. I would suggest you delete one thread or the other. There are no solid and reliable answers to your first two questions. Chronic pouchitis is treated in a variety of ways but the most frequent first line of treatment is antibiotics like cipro and flagyl. I have treated chronic "simmering" pouchitis, mostly successfully, for 17 years with... [ more ]
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J-Pouch ForumsGeneral Discussion
Thank you for that input. It helped. Sally [ more ]
Nothing it is just an upper scope. I personally have great pain with them but it is the gas that it produces and the work they have to do since mine always remove tumors and polyps otherwise they are cake. I go to work after I get them done. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thank you Jeane. You are so sweet. And, you are right . . . concentrate on the positive. Unfortunately they are doing the endoscopy to rule out polyps/tumors at the end of the small intestinen they could not get to with the sigmoidoscopy. For some reason, the meds nauseate me a little, and my tummy is tender and pouch (no pun intended) ever since...general fatigue. I had the black tarry stool yesterday, and can't figure why. But, if it happens again, I will call the doc. They are closed... [ more ]
I am sorry Sally. I am sending thoughts and prayers your way. I am in a rough spot too at the moment but less concerning than your situation. I hope they can help you with meds, possibly some biologics. Thankfully the tests are benign so now you can concentrate on the appropriate treatment to help you feel better. I remember how relieved I was when my final colectomy report came back indefinite for low grade dysplasia, as going in I was diagnosed with it. Sometimes it is very hard to focus... [ more ]
Well I got my biopsy results. BENIGN! However, they are scheduling an endoscopy and sent me home with metronidazole and cipro and two more weeks of Rowasa enemas, indicating that I have crohn's disease as well as the UC that came back in the rectum. They biopsied 15 2mm to 4mm polyps and did a blood workup to see if I have short bowel syndrome and will biopsy the other end of the small intestine when they do the endoscopy. I feel like you know what! I want my mom!! (too bad she passed away... [ more ]
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J-Pouch ForumsGeneral Discussion
I am about to have stem cell therapy done to regrow stuff in my bladder due to IC in California. Stem Cells are a rich man's game though. The center I am going to does have Chron's and UC on their list but no idea what they are doing in that area. FDA will most likely never approve all stem cell research and that leaves you paying 50k+ per treatment. I am part of the IC trial though with the IC association with this doctor and center so my price is locked in at 4,500.00 Since IC is auto... [ more ]
Failure rate is 10-20%, depending on the reporting center. Plus, it can take decades for failure to occur. Depending on what new technologies develop over the years, options can change. But, you should assume it is not reversible, even if the future may have options, because it is an unkown. Lots of things that seemed promising never actually pan out. Jan [ more ]
Thanks guys! So Tricia, your surgeon says you could go back to the Jpouch at anytime if you wanted? Why did you have to go to the bag permanently? Also, the surgeon isn't concerned that the muscles might become weak due to lack of use or innervation problems due to lack of use for so many years? Jan - good points. I just wonder if I do surgery and worse come worse the jpouch fails (not sure what % the pouch fails and they have to switch to permanent bag - do you know?) - I wonder if I'd ever... [ more ]
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J-Pouch ForumsGeneral Discussion
I've had no absorption problems with drugs or vitamins and supplements. With the exception of D, I take everything in pill form. Sue [ more ]
It is true drugs are mostly absorbed in the small intestine but the speed of transit could also have an effect? On day when the pouch acts up and it is fast and watery perhaps the meds are not so well absorbed.that variation on day to day and between people could account for some of the problems experienced by some? [ more ]
I was told no time-released meds as well. My doc switched me to oral pain meds as soon as I could eat solid food (like two days after surgery?), and my stoma nurse has been approving other prescription meds, so I'm sure most pills are fine. Right now since I am only 2.5 weeks out from surgery one, I am taking chewable vitamins (gummy daily women's multi-vitamin, gummy vitamin C, tums for calcium) just to be safe, along with a couple of small prescription pills (birth control and acid reflux)... [ more ]
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J-Pouch ForumsGeneral Discussion
Stress definately effects my j pouch among other body parts too. I started an exercise routine about 4 months ago. I simply walk on the treadmill or do the elliptical machine (I joined a cheap gym) for an hour every day. I feel better, look better and it helps alleviate stress a lot. [ more ]
NJK, Stress effects everyones' intestinal tract...even people without pouches...it is biological...fight or flight reflex. People with 'normal' guts are programmed to empty the intestines out before facing aggression, stress or danger...so it is normal that when we feel stress our guts turn to water, we get gassy, things boil in there... Depending on what is going on mine either liquifys (good thing for me), runs like crazy (feels like pouchitis) or dries out (I dehydrate). Goes strait back... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
I’ve been on Remicade for about a year for chronic pouchitis that became antibiotic-resistant. No clear diagnosis of UC vs CD, but the docs say it doesn’t matter at this point since the treatment options they recommend are the same: Remicade and, if that doesn’t work, I will opt for perm ileo and total removal of pouch. The Remicade works fairly well, but has not been the silver bullet I was hoping it would be. Nonetheless, my symptoms did start improving right away, even though I was told... [ more ]
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J-Pouch ForumsGeneral Discussion
Yes, Tom! My feelings exactly! Whoosh! [ more ]
ceeeeceeee! i literally just said the same thing to my wife. it kinda ejects the stool out. a blow out if you will [ more ]
ceeeeceeee! i literally just said the same thing to my wife. it kinda ejects the stool out. a blow out if you will [ more ]
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J-Pouch ForumsK-Pouch Korner
I do sit ups and use a Rogue Abmat. Supports the lower back. I only do full sit ups, never crunches. [ more ]
Wow, you all are very impressive and very encouraging for sure. Thank you all very much for replying. I'm gonna start out w/ mini crunches and go from there. Given the fact that my stomach looks like a road map of the NYC subways with having had several abdominal incisions, not to mention of course the "bandaid", I doubt a bikini will ever grace this bod but at least I'll feel more confident now in trying to strengthen those muscles w/o causing problems to the system. Thanks Again, Ali [ more ]
While sitting anywhere (driving, watching tv, on the computer, etc.) you can squeeze your ab muscles and release and squeeze and release as much as tolerated. This is like a sit up but not actually crunching! [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsHelp! Need advice now!
I agree with Liz. Cortifoam just aggravates my cuffitis and I am no back to three canasa suppositories a day.... [ more ]
I found cortifoam completely useless for cuffitis and for the bottom part of things even with UC. Way better succes with canasa supp... used LOTS like 3 times aday and rowasas. I think it was rowasa that got my cuffitis tamed down after about 3weeks of twice a day usage. [ more ]
Rebecca, I had the IBD seriology test to try and rule out UC versus crohn's and it came back UC. Pouch advancement surgery is when the remove the cuff due to cuffitis and basically detach the pouch and drop it down and hand sew it to your anal muscles. I also take antibiotics daily for my pouch and rapidly decline without them. They have no impact on the cuffitis. Right now I am on cortifoam which seems to be doing nothing for the cuffitis and also actually seems to irritate it more. Pouch... [ more ]
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J-Pouch ForumsGeneral Discussion
i started going the next day but yes i found it to be way harder that the first 2 surgeries and my ribs hurt too on the right side and my stoma was bothersome but it gets better. be prepared for the itchies as it heals though. some have it easy after but im having some discomfort at certain times during the night. i am only 3 weeks out though. i was hopeful id get lucky or that those that warned me were over reacting. it can feel intolerable but really its not. dont let your psyche get in... [ more ]
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J-Pouch ForumsGeneral Discussion
I had mine done in Memphis by Justin Monroe and I have been very happy with my pouch. He does surgeries at Baptist. There is also Stephen W. Behrman at UT Group who also does surgeries at Baptist. My doctor initially recommended him but I didn't care for his support staff so I asked for a second referral. I did talk to a couple of his patients though who absolutely loved him so maybe my experience was just different. There is also a good ostomy nurse at Baptist who was very helpful with... [ more ]
There's a great team of CR surgeons in St. Louis who have great j-pouch experience. I had mine done in 2010 by Dr. Elisa Birnbaum who is with Washington University at Barnes Jewish Hospital. She's been doing j-pouches almost since they were invented 25 years ago. [ more ]
I am in Memphis. I have't found a surgeon here that has done a J-pouch. I will probably go to the Mayo Clinic. [ more ]
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J-Pouch ForumsHelp! Need advice now!
O.k. I have been told that my surgery, performed by Dr. Young Fadok, Mayo clinic Phx. was done incorrectly and that in order to fix it, I must go through the entire process again. I can't bare it. I feel as if I am lucky to be alive. My hair thinned, became a wiry mess. Lost 30 pounds, I've gained 7 back. I weight 119. I can't afford to lose another 30 pounds. I have 2 young children......Johns Hopkins Hospital agreed with the 2nd opinion, that it needs to be redone. I don't even know what... [ more ]
Congratulations on your redo! [ more ]
Thank you Laurie! Your right, Kagels are so important. I get lazy and forget about them so thanks for the reminder! take care xoxoxo [ more ]
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J-Pouch ForumsGeneral Discussion
I did email Dr. Shen & did receive an answer late last night. He went over the findings from the pouchoscopy again & did send the same email to Dr. Remzi. He did clarify where the fistulas are....1 is to my abdominal wall, 1 is at the tip of the jpouch & 1 to the vagina (not bladder as I stated above). I also emailed Dr. Remzi's nurse practitioner, Vicki, & she responded as well! She set up an appointment for me to see Dr. Remzi on Monday. I guess I panicked before & am... [ more ]
i have a sinus tract that Shen has done the "kneedle/knife" procedure on to try and fix this issue twice. 1st 2 did not work and have a 3rd scheduled in a few weeks, but they are very expensive and does not even know if they will work. He also said if he cant fix it that he would suggest surgery again and possibly lose the pouch. I had an MRI and other test since him finding this sinus, and consulted with my surgeon at CC and he is confident from this MRI that this is same area i had my leak... [ more ]
I am sorry I did not see the original thread. My surgeon also travels extensively I always make sure to plan my surgery knowing he is planning on being in town and seeung oatients at the hospital for the entire week. I think this was obnoxious that Shen did not inform you he would be out during the time you are there especially considering your travel there and that you just had a procedure done by him. I would definitely address this with both his secretary or nurse and him when you see him... [ more ]
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J-Pouch ForumsGeneral Discussion
Suggestion: Ask for the plan's formulary for this year and the coming year to check on which meds are covered and at what cost, if any, to you. Then, if it's not covered, surely there is an appeal process....which will probably require beaucoup paperwork but will be worth it. Good luck! [ more ]
I have anthem high mark ppo and xifaxin was not covered. I do believe it could be based on the employer also as vsl3 was not covered and we appealed it and my husband's company then decided to provide coverage. There is always that option with your doctor's medical note describing a need for a chronic condition. [ more ]
I've never had pouchitis drugs, but the most I've ever paid for my prescriptions (Anthem) was the top level (in my case 60, in your case 40). I have had some issues with pre-authorization though. Some drug prescriptions might require your doctor to fill out extra paperwork. [ more ]
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J-Pouch ForumsGeneral Discussion
RLC- Unfortunately it is still unknown why these "genes" get turned on (think of it as a light switch getting turned on). Some theories on autoimmune disease point at viruses as being the main trigger that starts our bodies attacking ourselves other theories look at environmental factors or even a combination of factors all working together. Human gene mapping has the potential to prevent all autoimmune disorders, cancers and many genetic diseases. All scientists need to do is find a way to... [ more ]
little greeny - That certainly makes a lot of sense. If we can just work on figuring out the genes and what the triggers are I think there would be more cures for all diseases including cancers. Why do our bodies start to reject? Roberta [ more ]
Thanks you guys for trying! Still at a lost. I have to meet w/surgeon soon to go over all this new information from GI's office. I just haven't made the appt. yet. Tired of seeing doctors. I will make the appt. soon. Roberta [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
hi Tom, your recovery sounds similar to mine. I was super SUPER hyper-sensitive to almost every food in the first couple months. it was like my j-pouch was really temperamental, spastic, grumpy, no matter what i ate. there didn't seem to be much rhyme or reason. now 4 months out, i still seem more sensitive than others, for some reason, but my pouch has slowly become accustomed to having food pass through it. but i do still have clustering episodes. i am trying fiber again, but initially... [ more ]
It seems like you have having far more food intolerances than the norm; sorry you are having such a rough time. At this point, it might be worthwhile for you to try going entirely gluten and lactose free for at least a good week or so, and see if there is any difference. I also think it's a good idea to call your doctor and see if you can't get hooked up with a dietician. You SHOULD be able to eat more foods than this, and fearing foods is never a good thing, so I think you might need a bit... [ more ]
the only thing im eating is toast and cracker and once in a while single grain babyfood rice cereal mixed with almond milk. im back to fearing foods again some including my surgeon said start fiber supplements but they get me gassy and acidy. wheat is so easy and will make eating away from home so much easier but i fear wheat is a culprit. im so disappointed so far but being patient. i must admit when the acidy gassy strained clusters start id rather not be here anymore but the easy days... [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks. I think I'll just hold on to them instead of putting them in a blog in case anyone ever asks to see those type of pictures. Take care! [ more ]
I don't think this site has the bandwidth to support a photo album. Perhaps you can start a blog and provide a link in your signature? Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Soluble fiber yes, insoluble fiber no. [ more ]
Thanks for the replies guys. I'll probably start straining some of the fiber out. It seems like fiber would help with watery bm's but I guess too much will also have an adverse effect. Tom my takedown was in 07 [ more ]
It could be a little too much for now, try deviding 1 smootie into 2 and see if reducing the dosage helps..bean sprouts can be very gassy and so can the mix of veggies...you just have to play with it and measure your results. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Oh my gosh...so sorry you went thru that! How scary. I am finishing up today a series of 8 iron infusions. Never had any test before hand. Luckily all the infusions went well and I feel a million times better. Hope you can get something figured out to help you. Thanks for letting us know. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
thank you very much! i am hoping it will heal on its own as my doctor thinks it can. also appreciate the exercise tips, which i will try once i'm healed more. Roberta, did you do anything to help with the healing, or it just occurred naturally / with time? ~ [ more ]
fq I had the symptoms of air or gas passing through the vagina (no feces). I told this to the surgeon at the time and I asked him if this could be a fistula. He said that feces would be emptying out, too. Well, I had it for a couple of months (especially if the j pouch was full and at night while laying down). I believe I had a small hole but that it has healed on its own. I did not do any physical activity while healing. I am 5 months out now. I hope this helps. Roberta [ more ]
Yes. FQ...it all moves, shifts, swells and weakens down there post op...they tend to tell us to do kiegels, pelvic lifts, mild squats (you squat down til your plams touch the floor and then tighten everything down there)...but...and here is the big but...you may want to wait a while before doing anything 'violent' or too strenuous until you are healed more..the kiegels are the only things that are suggested for the first year..your body is still healing and you shouldn't overdo it...the best... [ more ]
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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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