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J-Pouch ForumsGeneral Discussion
Results of failed manometry test
S sally85
sally85 thanks mgmt10, i bought the machine and used it and only got 35 then i read that 100-150 is good and 200 is excellent lol rachel i hope i'll be laughing by the end of it im so worried because the first surgeon has already told me the muscles are so weak hes surprised that someone of my age has such a problem :/ [ more ]
rachelraven Had it done at 19. Never got a "number," but laughed through the test, as I watched each "squeeze" create peaks on the paper! lol. I had good sphincters, that's all I remember. Them telling me I was better than normal. [ more ]
mgmt10 I never even had this done. But I do remember reading someone had a number given to them because it was on the low end. [ more ]
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J-Pouch ForumsGeneral Discussion
Constipation. Which Fiber Supplement?
D DeathStalker
Spooky Agree; this sounds more like a stricture, especially if you are feeling tightness. However, it is possible, from time to time, that our stools might be more formed. If this is the case AND you have some level of stricture going on, then you might have some difficulty passing stool. You should get in touch with your GI or surgeon to have a stricture confirmed or ruled out. This is usually done through a digital exam. In the meantime, you will want softer, looser stools which will be easier to... [ more ]
DeathStalker Maybe it is a stricture. If so, then what though? Hope this isn't the case... [ more ]
suebear Are you sure this isn't a stricture at the outlet? We don't usually get constipated. Constipation is hard, dry stool. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
hotdogs an issue for ileo?
PouchomarxPouchomarx
Pluot Never had a problem... I wouldn't eat more than one or two though, and always with a bun. I am a slow eater though and a champion chewer [ more ]
Pouchomarx DAMNIT...lol.. well i'm not going to dismantle my hotdog at the ballpark and start peeling the skin off... I will look like a psycho... [ more ]
rachelraven No obstruction with them here. They did come out pretty much undigested, though, teeth marks and all. [ more ]
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J-Pouch ForumsGeneral Discussion
Stricture at takedown site
P Pouch4Wf
Jan Dollar The stoma site is often too distant from the anus or mouth to be accessable via endoscopy, so it probably is not an option for you. But, worth asking about, for sure. Jan [ more ]
SteveRM Hello I think I am having this same problem except I am getting complete blockages. Can they diliate the stricture at the takedown site. I would much rather have that done than surgery again. [ more ]
Jan Dollar Narrowing at the stoma site is common, but stricture to the point of causing severe symptoms is not. Also, symptomatic adhesions are most common at the stoma site, but this is different than a stricture. A stricture is within the bowel wall itself, and adhesions are outside of it. They can result in the same obstructive symptoms though. Jan [ more ]
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J-Pouch ForumsOstomy & Skin
J Pouch VS Living with Ileostomy
I izzie29
n/a I'm apparently one of the few who, if I could do it over again, I think I'd stay with an ostomy. My j-pouch was made somewhat incorrectly (small pouch, long ATZ) and has caused quite a few problems for me over the last 21 years. I was doing fine with the ostomy while I had it. However, if you have a surgeon who has LOTS of experience building j-pouches, and have someone who will provide you with excellent care afterwards (by that I mean years, not just months), you have very good odds of... [ more ]
Cataja Unless there is a reason not to first try the J-Pouch, I feel you have to give it a shot. If it doesnt work, you can live a pretty normal life with a permanent ostomy. [ more ]
GinLyn It's really a very personal question and decision. What have you heard about pouches? Are there any specific concerns you have, either way? There are many, many people with great pouch experiences and many, many with great ostomy experiences! Gin [ more ]
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J-Pouch ForumsGeneral Discussion
Loop illeostomy
T Thompson
Scott F Oral rehydration solutions always contain some sugar. Sugar turned out to be the key ingredient in keeping cholera victims alive. It's not Coca-Cola, and you might have to experiment with the recipe for your circumstances, but starting with a WHO solution is pretty reasonable, and it's easy to find a recipe. [ more ]
Jaypea I agree with everyone else. Sugar just pulls more water into the bowel contributing to very watery output. Drinks without sugar like G2 are great. There are lots of recipes on line for electrolyte replacement drinks that are sugar free. G2 can get a bit expensive. Now go get yourself a glass of something and drink, drink, drink. [ more ]
Thompson Thanks a lot for the reply. You guys are such help and will take the advice on board Thompson [ more ]
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J-Pouch ForumsGeneral Discussion
Emptying Pouch Question
MysticobraMysticobra
Mysticobra Ya....I guess control is the most important thing at this point. I do have that although I do leak sometimes and at times have to rush to the throne to go. One other important thing is you have enough reading material. After all we do spend more time than normal in there.....hahaha. Thanks for the replies. Richard. [ more ]
CeeeeCeeee First thing in the morning I find it takes more than "one session on the throne" to really empty my J-pouch. So, I just let things flow out of me naturally. Then, I get up and walk around a bit, making coffee, etc., and then sit back down on the toilet and the second and final session to take place. For me, this only happens in the a.m. The rest of the day is no problem for me. Depending upon what I eat and how much I eat, just one "go" at it works for me.....and not that often, either. I... [ more ]
Mysticobra Yes....I do that maybe 50% of the time. When I do not have to go back I feel great. Richard. [ more ]
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J-Pouch ForumsGeneral Discussion
Team Challenge 1/2 Marathon!
L LizTish22
Jilly I'm a Team Challenge alumnus as well! It is a wonderful organization and a cause that is so near and dear to our butt, I mean heart! The coaches and mentors will give you all the advice, support, and direction that you'll need. You gonna be an endurance athlete in no time! My one piece of advice: I think we need to drink way more than the average endurance runner/walker, and we need to drink electrolytes (all the sports ades) along with drinking water. Use Nunn or stuff like that! I stopped... [ more ]
betsaronie I did Team Challenge Vegas in 2011, just 5 months after my takedown. I wasn't really ready at that point physically and suffered some joint damage to my already messed up hips. But mentally, it was soooo what I needed. To be surrounded by people who just "get it." I loved all the people I met and CCFA is a wonderful and being transparent about how much of each donation goes directly to research funds. I kept wet wipes in a baggie in the zippered pocket of my running pants for all my bathroom... [ more ]
Pouch4Wf Team Challenge ROCKS!!! I'll be in Vegas at the end of the year for my 5th team challenge event. An absolutely awesome thing to be part of. Good luck with your training, you'll do fantastic! Dan [ more ]
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J-Pouch ForumsPouchitis
Pouchitis Again
R Rocket
Rocket Hi Liz, I have heard that before. After I see my doctor on May 2nd, this is my doctor who treated me for Kidney Cancer back in 2009, I am going to look into this ELISA/Act test that will measure everything that your body consumes to see what your reaction is. Don't know much about this yet though. If I have other information, I will pass this along. Rocket [ more ]
liz11 rocket if you are eating toast,.. that is probably wheat unless you are having rice bread like UDI. have you tried diligently the FODMAP diet. It really isn't that hard if you want to give it a shot. There is scientific and medical evidence that FODMAP diet works for SIBO. symptoms are similar to pouchitis. [ more ]
Rocket Jeane, I really need to speak to a GI/Nutrionist to really see what diet will work for me. So I need someone familiar with both sides of the spectrum. I just know I can't eat foods high in fiber, milk products, soy, things like that. It's tough. You find somethings in the super market that are low in fiber, but then they have milk. Or vice-versa. There has to be some sort of test that the medical profession can give you that would give you some sort of readings that would cause things that... [ more ]
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J-Pouch ForumsK-Pouch Korner
Marlen 30 Fr 15 inch catheter....
J Jasmine 2
Jasmine 2 Dr. Eric Dozois didn't see me yet. Radiology had to do something to get my catheter in so they did it this way so it would stay in and I can pull it out enough to empty it. I flush it out to each time and then push the catheter back in flush to my stomach and use a eye drop cap to insert into the end of the catheter to plug it so it doesn't leak. I have a gauze bandage rolled around my hips and taped in 3 places to hold it in place and wrap the gauze around the tip of the catheter to hold it... [ more ]
DG78 Is the catheter attached to a constant drainage bag, or capped off somehow? And what do you do to empty the pouch? Why do you think they left the catheter rolled up inside? Has Dr. Dozois done K-pouches before but just doesn't do them regularly? I'd be nervous too, but hopefully since your first pouch worked so well and for so long, things will go well for you. I'm still trying to figure out why so many of us are having problems with our pouches 30+ years out. Debbie [ more ]
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J-Pouch ForumsPouchitis
Oily or greasy stools
AllyKatAllyKat
Jan Dollar High fat stools float. Jan [ more ]
J.T. I was recently diagnosed with SIBO. I think I have had it for years. I have always had excess gas, but always attributed it to chronic pouchitis. It all makes sense now.......trouble gaining weight, low B12, low vitamin D. So now I am doing the FODMAPS diet and a round of antibiotics to get the SIBO under control. My question is.......how do you know that your stools are oily? I have noticed that my stools are sticking to the bowl. Thanks, Joe [ more ]
winter wish I have pancreatic insufficiency and SIBO, so have to take Creon and rotating antibiotics with each meal. [ more ]
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J-Pouch ForumsGeneral Discussion
Fatigue and discomfort
TrailerParkHeroTrailerParkHero
TE Marie Hopefully you will be over this soon! [ more ]
Scott F Giardia is pretty easy to treat and recover from. The diagnosis is often missed, so I'm glad yours was caught. [ more ]
TrailerParkHero Incredible. After multiple visits with different physicians and minimal testing, I got what I wanted. A stool sample. I think every other Dr. visit I went to previously, there were so many other scary possibilities mentioned. So when I would ask about parasites, it was kind of shrugged off. Nearly a month has passed and I received a call this afternoon I had test positive for giardia. Man, as weird as it sounds, that was what I was hoping for. The meds had to be ordered as they weren't in... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis flare up / drug reaction
T TPark
chrystal Sorry forgot to mention it started first as a rash on his feet and the top of his arms , then got worse after, if it is the same allergy you to have then you have to stop the offending culprit in my son's case it was antibotiotics, then let the allergy run its course [ more ]
chrystal Hi my son had exactly the same reaction in hospital he went bright red to purple with swelling all over the body , got these welk like things over his back , and like a measles rash all over with spiking temperatures, he was diagnosed with ACUTE GENERALISED EXANTHEMALOUS PUSLVIOSIS the end of the rash is where the skin peels , my son's was caused because of allergies to antibiotics, hope this helps [ more ]
Scott F For most J-pouchers the right diet is whatever you like to eat, and that you tolerate well. For those with a tendency to develop pouchitis, reducing carbohydrates (sometimes drastically) seems to be helpful. Just search for the word "diet" here and you'll turn up hundreds of posts, many of them helpful. [ more ]
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J-Pouch ForumsGeneral Discussion
Networking-Internship
S SimpleX
betsaronie What part of Ohio are you in? I have friends that work for Fidelity in Covington, KY so if you're near Cincinnati I could ask them if they know of anything. Are you looking for an internship still or an entry level job? Also, I've learned how to gloss over the gaps in my employment due to illness. They usually ask since I had 5 years with no job. "I had some health issues that needed to be addressed, but they are completely resolved now and are no longer an issue." I've been hired 3 times... [ more ]
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J-Pouch ForumsGeneral Discussion
Arthritis
sherlocksherlock
debbieod ❤️
KangaRoe Hi Sherlock, I had my colon removed over 20 years ago but had been diagnosed with Crohn's a few years ago. I have been having inflammation in my joints and low back pain for years. I recently have been having hip problems also so I went to an orthopedic specialist. I am having pain in my hip and sacrum so the doctor sent me to physical therapy and I now do specific exercises for it. Here is a link explaining it. Something like this might be going on with you too. It might be worth it to go... [ more ]
sherlock Thank you, At least I know I am not alone. I will see about the arthritis medications. [ more ]
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J-Pouch ForumsK-Pouch Korner
Kpouch recovery
G Gigi68
Bodoni First of all, where do you plan on having the surgery? How many has the surgeon done? What is his/her success rate? Can you afford to travel? Have you explored the BCIR version of the K-Pouch? It is done in St. Pete Florida. Could you go to the Cleveland Clinic for the standard K-pouch? You really want to choose a place that has done lots of this type of surgery. Why do you want a K-Pouch over the J-pouch? You need to do lots of homework before you even think about when you can return to... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
weak pelvic floor and weak anal sphincter
S sally85
sally85 I see what you mean, I guess u have to tube I to your body and really listen to how it's feeling, I'm glad there's some hope for me after all then, Im sure my pelvic floor is shot well I've been told it is! So I'm working to fix it, are you based in England? There's a clinic I've found I'm going to see them in may they deal with just pelvic floor dysfunction, maybe you could try them thy might have ideas or exercises to help with any problems? [ more ]
ksr I could not walk without having stool leakage. I could not lift anything either. I had to wear panty liners 24/7 until I got my pelvic floor straighten out. I still have problems on occasion. I have learned how to manage it. If my insides are not feeling "normal", then I will not lift things. I am careful. [ more ]
sally85 Thanx so much for replying! That gives me hope which means so much right now Do you mind me asking what was involved in the therapy you had done? And also how bad did they say the problem was initially? With me the surgeon had a check and said there is a defect in the sphincter from 10-2 like on a clock and he's referred me for biofeedback but he just seemed so so against having the j pouch done [ more ]
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J-Pouch ForumsGeneral Discussion
Nausea
H heyitsles
heyitsles Just a quick update, I had 2 scopes done on thursday. No inflammation found in the pouch or in my stomach etc. The doctor took some biopsies and is going to give a prescription for Zofran for nausea. So far he is stumped... [ more ]
heyitsles Thanks Scott, I probably haven't tried the pump inhibitors long enough but I will continue to use them until I see my doctor. I also did get some B12 patches last week. You put one on every 5 days, so I have used one so far. I also went for a blood test a couple days ago to check my iron and B12 so I look forward to the results. I have been googling a lot to try to figure out what is going on. Thanks for all help. [ more ]
Scott F If it is gastritis, that takes a while to clear up. Are you sure you used the acid inhibitor long enough? The fact that you've had something like this before could be an important clue, too. I hope you have no need for emergency surgery this time! [ more ]
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J-Pouch ForumsPouchitis
pouchitis
T techwrench
techwrench I'm finally close to normal again.The flex sig a month ago revealed inflammation in the pouch and cuff.Dr. put me on budesonide - 3 pills daily.I found with that dose, I had terrible gas and bloating.Went to 2 pills a day,and the inflammation started to come back.I am now taking 2 pills at once,and the third pill 2 hours later to spread the dose out.This has worked real well.The gas problem was odd.The only way to get it out, was to use enema irrigation to expand the pouch,and then empty.The... [ more ]
Ikh How are you now techwrench? [ more ]
JJA I have not really noticed any steroid symptoms from Entocort and have pretty much been on one dose or another for a couple years. Mayo Clinic is doing trials right now to look at entocort as a maintenance drug for UC. The only possible side effect I may have noticed is that my fingernails seem to peel a little more frequently. The advice on how long one can stay on entocort may be changing as more is learned. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Has anyone had ...
ladyjaneladyjane
TE Marie I've had it and they insert something like a balloon filled with a little bit of fluid and test how you can hold it inside your j-pouch. I think they vary the amount of fluid that is in the balloon thing. It is a quick and painless test of your sphincter muscles. Nothing to worry about. Easiest test I've ever had involving my colon/j-pouch and I had cuffitis when they did the test. [ more ]
BillV A manometry study can be performed on either end to measure muscle strength. I am assuming that your doctor will be doing an anal manometry to test the strength of your anal sphincter and thereby assess your ability to retain stool until you empty your pouch. Your doctor will insert a small probe that measures muscle strength and the exam is not painful. This test is not used to test for adhesions. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Partial blockage
SavannahSavannah
Karenchase Thanks, Savannah. I am also very bad at recognizing and managing stress, and there is a pretty big one in my life right now. Good advice, I'll try to take it [ more ]
Savannah Karenchase- try not to worry and reduce whatever is stressful that is not an essential stressor. I know that is much easier said than done but be intentional about creating some calm and relaxation in your life. Worry and tension can bind up the gut, especially for us pouchers. My blockage is slowly easing and yours will ease up too. If not, it's just back to the ER so you don't need to panic. From what you've said your obstruction is a simple blockage and everything about your pouch is... [ more ]
Karenchase I would like to chime in here because I think the same thing is happening to me. Starring about 5days ago I had kind of a stomach ache, just below the belt. By yesterday I was in pretty serious pain (which is big because my pain threshold is much too high for my own good) so I went to emerg last night. The place was a zoo, but they gave me IV fluids and a shot of something called buscopan, apparently an anti spasmodic, meant to loosen my guts. No dice. X-rays showed no perf or other... [ more ]
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J-Pouch ForumsGeneral Discussion
crohn's now with the pouch
T TonyG
TonyG Thank you all! I'm looking into the Cleveland clinic, I'm worried that I'm missing out at another chance! :-) [ more ]
TonyG Thank you Goldie, I'm sorry you are going through so much. I feel the same with exhausting all my efforts before going to the bag permanently. I don't think I can even come to terms with that idea. Best of luck to you. Thanks again for sharing your experiences with remicade. [ more ]
goldie Tony...I've had my jpouch for 22 years and was diagnosed With Crohns in 2008...I was on humira which helped my Crohns but not the pouchitis...I then went on remicade which worked great...helped not only the Crohns but my pouchitis...unfortunately I had an allergic reaction and now on cimzia...had a scope yesterday and I now have Crohns in the pouch as well as the stricture at the anastomoses...I'm at a crossroads...I will be trying methotrexate with the cimzia and then maybe tysabri ...then... [ more ]
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J-Pouch ForumsGeneral Discussion
Warning: Important possible side effect - Jpouch surgery
S Solomin
Jan Dollar Those white anti-emboli stockings used to be common in the U.S., but seem to be largely replaced by the pneumatic leg wraps, which actively use alternating pressure to keep the blood moving. The stockings are static and can cause problems if they slip (and they often do), acting like a tourniquet. Jan [ more ]
skn69 So sorry for the bad post op surprise...haven't you been through enough already???? Enough! Go home, be healthy and happy forever more! Here in France they make you wear 'contention stockings' on you...have to put these awful, white stockings on (takes 2 people to get them on your legs, they are that tight)...but they seriously cut down on blood clots and other post op leg issues...not sure at all if compartment syndrome can be helped or prevented by these but they are official protocol here... [ more ]
Jan Dollar Pneumatic leg wraps can help, but compartment syndrome is not completely preventable. Many factors contribute, and swift diagnosis and treatment are the main focus. Complications do not necessarily point to negligence. Sometimes stuff just happens. Hope there are no lasting effects for you. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
HELP!!
Mema 1Mema 1
Jan Dollar You're welcome. I'm sure you'd be just fine. Lots of very helpful and knowledgeable people here. Jan [ more ]
Mema 1 Thank you so much, Jan. You're so unbelievably knowledgeable in all areas. Thank you so much for all the posts and all the advice and most of all your concern with everyone (including me) on this site. Whatever would we do without you?? [ more ]
Jan Dollar There is much controversy/contradiction regarding small bowel involvement post colectomy for UC. Some consider it always to be Crohn's that was previously undiagnosed. If it is only in the pouch, Crohn's is less suspect. But, if the inflammation (including ulcers) are well beyond the pouch, Crohn's becomes more likely, barring other causes, such as NSAIDs, bacterial infection, celiac disease, etc. The sad truth is that they can't tell just by looking at it. Even biopsies and serologies are... [ more ]
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J-Pouch ForumsGeneral Discussion
cleveland 2nd round
ST shoot thru
mgmt10 I remember your posts from last summer. I hope she rebounds quickly this time. These surgeries are really tough but very much worth it in the end. Wishing her a very speedy recovery. Let us know how she's making out. [ more ]
shoot thru Thank you. She is a little better today.. [ more ]
liz11 hang in there jim and your wife. If you are at CC. ... its the best place she can be. My mum had lupus and I'm currently in the suspicion of lupus phase. I know it is a very difficult disease. So blessings to you and her and prayers that she can recover from this surgery quickly. [ more ]
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J-Pouch ForumsHelp! Need advice now!
suffering with terrible sickness
C chrystal
chrystal thank you for your replies , sorry i have not been on line for a day or so, i have stopped the imodium after speaking to the hospital yesterday , they said my son most likely had the norovirus as it was present on the ward he was discharged from, i decided yesterday to take away the fruit juices and give him only a water based diet starting at 5 mil every half hour for 2 hours then to 15 mil every 20-30 minutes so far thats all i have managed but his kept it down thankfully, i am taking him... [ more ]
Scott F I agree that this isn't a normal situation that's appropriate to manage at home. I think he needs to get sorted out by the folks who sent him home, or whoever is available to figure out what's going on. I'd suggest staying away from Imodium until it's clear that he's moving food in the correct direction. [ more ]
GinLyn He probably should go back to the hospital and be seen. He might need some IV drugs or liquids, maybe an NG tube. He can become dehydrated VERY quickly so this is always a concern. With the symptoms you describe I'd hit the A&E ASAP. Gin [ more ]
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J-Pouch ForumsGeneral Discussion
pouch advancement for fistula?
GinLynGinLyn
GinLyn Thank you both for your replies! Yes, it is a difficult surgery and, I've heard, quite painful, but I really can't live with this stupid fistula much longer. The constant infections and pain -- not to mention that I am now losing up to half a liter of liquid at a time! -- is making it not possible to live with at all. My poor kids are so used to Mommy being sick and tired all the time that when I really am up and around and doing things they go into semi-shock and don't know what to do with... [ more ]
n/a My Cleveland Clinic surgeon also recommended a pouch "redo" - I don't know if it's the same thing as an advancement - for my PV fistula, which sounds similar to yours (low). She said, however, there was no guarantee that the fistula would be taken care of with this approach. However, it sounded like there was a more likely chance of a redo working than any of the other options I was given - which she rated at a 0 - 10% chance of success, other than pouch removal. I'm still sitting on the... [ more ]
GoBlueGrl Hi Gin Lyn, I had the pouch advancement surgery to repair a fistula about two years ago. The surgery wasn't fun but it was the last resort after several other, less complicated, surgeries failed. There were some complications and I ended up having two emergency surgeries in 24 hours (so I'm told, I don't remember any of it) and was in ICU for five days. Please understand that I am not trying to scare you or steer you away from undergoing this surgery. I have had over 17 surgeries for my... [ more ]
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J-Pouch ForumsGeneral Discussion
Trash the Pouch
MysticobraMysticobra
liz11 pouch failure can simply be because the pouch was built wrong in the first place. unfortunate... but it happens way too much. This is one of the reasons Remzi at CC is advocating to make the jpouch surgery a board certified surgery. Because far too many patients are coming to CC with messed up jpouches. I had my pouch disconnected 3.5 years ago (just 6 months after it was connected) .. as shen and remzi insisited it happen immediately as I was so sick and underweight. I then had it ripped... [ more ]
Mysticobra Thanks. That is quite a hike for me but I may call. First I have to talk to my GI. I have not met up with him since my surgery. Richard. [ more ]
nocolon-2000 If your insurance will cover them, give Dr. Robert Jacobson or Dr. Paintoon Tulanon at Baylor - Dallas a try. An awesome GI is Dr. Kimberley Persley in Dallas. They are who I see and I love them! [ more ]
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J-Pouch ForumsGeneral Discussion
Crohn's Plus GI Doctor
Mema 1Mema 1
Mema 1 Thanks, Scott, I'm in terrible pain tonight, the same pain that I before I was put on entocort. Just don't know what to do anymore and I'm getting very discouraged. I will mention to the doctor, when I call him tomorrow what is happening and also the backwash iletis. Think I'm also going to start a new discussion to see if anyone can offer me suggestions of what to do. I'm at my wits end at this point. [ more ]
Scott F Just to be clear, ulcers in the small intestine don't prove Chrohn's, they just make it important to consider. Backwash ileitis could probably cause the same thing. The reason to label it (as Crohn's or whatever) isn't to worsen or allay your (completely legitimate) concerns. The label (when it's correct) helps suggest treatments most likely to help. If the diagnosis isn't really clear, then you just have to try more things until you (hopefully) find something that works. [ more ]
Mema 1 DUH, AlleyKat - I guess I didn't realize that CD is Crohn's Disease [ more ]
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J-Pouch ForumsGeneral Discussion
Mucosectomy
C Corzine
Corzine Thanks! [ more ]
dtmack I had mine completed by Dr. David Dietz at Cleveland Clinic. He has done hundreds of them. While the procedure was extremely painful, i have had zero side effects from it. Good luck [ more ]
suebear Good question. My surgeon had done over 2000 pouches when I had surgery and I later learned I was only his sixth mucosecotomy. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
We need advocates for the Kock Pouch/BCIR
J Jasmine 2
BillV The Quality Life Association’s mission is to support those with continent ostomies and provide information about those procedures to prospective patients and the medical community. I recommend those who have interest in these procedures visit the QLA website: www.qla-ostomy.org and consider becoming a member. Health Corporation of America (HCA) recently acquired Palms of Pasadena Hospital in St. Petersburg, FL (which has one of the two BCIR programs in the U.S.A), and it is my understanding... [ more ]
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J-Pouch ForumsGeneral Discussion
Green Juice
S sally85
sally85 Thanx sharon, i tried the juice diet since i last posted and my ileostomy has just been full of gas and water to be expected really i guess, im guessing this type of juice diet would be a no no if i ever had the j pouch created :/ [ more ]
skn69 Sally, I have heard different things about juicing and "green goo" and various other liquid diets. Some very good and other neutral but according to my rhumatologist 'it couldn't hurt' but he does not guarantee that it will help either. It will 'detox' your body and that may un-swell you and reduce some inflammation but it does not 'cure' any underlying disease as far as I know. I have done liquid diets my whole life, some voluntary and others medically required due to pouch problems and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Extremely sick and lost
LA Laura Anne
AllyKat Yes, I would go to the ER. This May or may not be pouch related. I hope u get well soon. [ more ]
Laura Anne Hi friends. I just wanted to know if anyone has any advice for me since I am still continuing to get worse. What could be wrong? Do I need to have the doctor scope again in case he missed anything? Go to the hospital at this point since I couldn't leave my bed today? I'm lost. [ more ]
Laura Anne I didn't know that! That's wonderful news. Thank you! [ more ]
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J-Pouch ForumsHelp! Need advice now!
cuffitis treatment
G goldie
goldie I use cipro and flagyl for the pouchitis...they work it's just that it was great not having to take them with the remicade...I know the risk of pouch failure with Crohns...all to aware and I'm not going to lose it without a fight...I've had a stricture at the anastomoses for over 10 years and it's never bothered me...I've actually never had problems going until now...and I've never had bleeding with my jpouch until now...the symptoms appear to be cuffitis but who knows...does methotrexate... [ more ]
Jan Dollar If the cimzia is not helping the pouchitis, have you treated with antibiotics? I would presume you had, since it is ptretty standard. What about using methotrexate in combination with the cimzia? I use Simponi, but that has not been approved for Crohn's, at leadt not yet. Cuffitis may or may not be chronic, and if you have an anal stricture and/or chronic poucitis, that can worsen things. You can have bleeding with pouchitis too, just less likely. I am sure that you know that pouch failure... [ more ]
goldie Thanks Jan...I'm currently on cort enemas...have a scope tomorrow...in 22 years I've never had this problem...I'm actually just assuming its the cuffitis but I seem to have the symptoms...if I do have it, is it easily treated or is this a sign of more issues to come...I have Crohns as well now and im treated with cimzia...remicade worked great for both the crohns and pouchitis but I had a reaction to it and after almost 5 years I built up antibodies against humira...cimzia helps the crohns... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
brand new j pouch and feeling alone
J JHendrix
Pluot A little bleeding is not unusual. It should decrease over time as you get further out from surgery though, so if you have a sudden increase, do reach out to your surgeon. It is normal to continue to see some mucus in your bowel movements from now on. The GI tract is always producing mucus and occasionally passes small amounts. It's normally "hidden" because it gets compacted in stool, but since the pouch doesn't really compact anything like a colon, you'll be able to see it most of the time. [ more ]
mgmt10 If you have just had the reversal then this could be a normal part of the recovery progress. I had a little bleeding after take-down but it only lasted a couple of days. If you start feeling worse and/or the bleeding continues, give your surgeon a call and let them know. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Really need advice / suggestions
RE5RE5
Jan Dollar Besides encouraging bacterial overgrowth, consuming drinks/foods high in sugar also promotes diarrhea, due to an osmotic effect. Sports drinks are for those with normal GI systems. You are better off with G2 or other low sugar types, or dilute Gatorade or juices by half to avoid the diarrhea. Otherwise, you are defeating the purpose. Plain water is OK, but you need to sip, not slam it down, to hydrate properly. Jan [ more ]
RE5 I honestly didn't know that but, it makes sense. I was only drinking water when I was lifting / running but since I can't do that at this point I've just been trying to get whatever I can down to stay hydrated. [ more ]
jeane Gatorade is very high in sugar. You need to watch your sugar intake with a jpouch as it can breed harmful bacteria. I have had less symptoms by eliminating almost all sugar from my diet. [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
My pouch is functioning bad last weeks, some diarrhea, blood and cramps
I Ikh
Roni* This could easily be caused by your antibiotic. It's probably causing a bacterial overgrowth in your guts. I'm sure your doc prescribed the probiotic in order to prevent this. May have gotten out of control and will take some time to calm down. Make sure you are getting PLENTY of probiotics. Maybe add some yogurt along with the VSL. -Roni* [ more ]
See 1 reply...
J-Pouch ForumsOstomy & Skin
Where is your stoma?
LHettiLHetti
aka KNKLHEAD My apologies for not being clear .. I didn't have re-positioning, necessarily. I had a temporary ileostomy, the take-down to pouch, then another ileostomy in the same place, then another take-down. Two in the same place. However, I developed more issues with the pouch and back to a temporary, but the surgeon wanted a new location for this, switched to the left side for this new ileostomy. I hope that makes sense! In essence this is my third ileo but takedowns in between. [ more ]
Donna H KH, How extent was the surgery for just repositioning of your stoma??? How long was the surgery? I have mine for another 6 months and did not even think of doing something like this. [ more ]
aka KNKLHEAD Hi, I had the opportunity to "choose" a new location for my second "temporary." My first one was too high, just above my pant line. I had to buy pants that were much longer than normal and hike them up! I looked pretty goofy with hiked up pants! Ostomy placement is very, very important, and frankly, the ostomy specialists in the hospital IMHO are not all that good about placement. When discussing where it should go, she immediately drew an X. I told her no, I wanted it lower and then she... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Questions need answers ASAP plz
M Matt34
Scott F Fair enough, Kiwi. That's why I wrote "most of us" and "some circumstances." You have to get to know your body, including what it takes to stay hydrated. Most J-pouchers do fine just drinking plenty of water. Some (like you) discover that they need something more, but I think that works better as a discovery than an assumption. [ more ]
KiwiPoucher Hi Scott Not all of us are that lucky. You don't have to run a marathon to get seriously dehydrated. Chronic dehydration can be a serious problem with a J-pouch so it is good for a new j-poucher to be aware of the possibility of it. No matter how much I drink I can still end up in hospital when all I have done is rest. It is worst during the summer when it is hot my small bowel just does not absorb enough to keep my levels high enough. [ more ]
Scott F Water is fine for most of us for hydration. Under some circumstances extra electrolytes might be needed, but we're not running marathons every day. [ more ]
See all 15 replies...
J-Pouch ForumsGeneral Discussion
Making a Decision on Second Surgery
NJ New J-Pouch
CeeeeCeeee I will never great having the surgery to connect my J-pouch. I seriously considered not doing so because I felt so wonderful with the ileostomy. I kept my temporary ileostomy a full year and once I learned which products worked best for me, it was wonderful. I'm 73 years old and wondering if I wouldn't be better off with an ileostomy even though I'm have no problems with my J-pouch. If I should need full time care in my future, I think it would be much easier for a careprovider to take care... [ more ]
New J-Pouch I have been SO satisfied with my surgeon and told he is the best at C. Clinic, but I am embarassed to say "Why didn't I ask that". I was surprised at my 3 month visit to find I had a rectum. So this is one question I will ask when call them about my decision. There is SO MUCH TO ABSORB, in the consultation that maybe I just don't remember. Thanks for your input and I will keep you all posted when I find out. Everyone has been very helpful. [ more ]
KiwiPoucher Like Mariane I am puzzled why you would be given the option of keeping your rectum as it is a prime site for UC. To give you some reassurance, I had my colon and rectum removed and the surgeon left no cuff so my small intestine was effectively pulled through and a new anus made with it. I am 100% continent and emptying my pouch is totally easy and controlled. Such a relief after 33 years of bowel incontinence on and off with UC. I think it is vital if you do go down that route you are 100%... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Long-term outlook
donn369donn369
pouchington thanks jan! [ more ]
Jan Dollar There is a difference between restoring normal testosterone levels, and using it to boost performance and/or for body building. The former is prescribed for a medical condition, the latter is not a sanctioned use, but common in the body building/sports enhancement field. Long term use in this way leads to damaging effects. As for the lifting, Dr. Shen has seen pouch rupture associated with lifting in his clinic. But, I have not seen documentation noting this extreme lifting admonition in the... [ more ]
pouchington why did he say to stop the testosterone? i need it because my levels are at zero without it... [ more ]
See all 8 replies...

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bjohnson@j-pouch.org

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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This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.


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