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J-Pouch ForumsGeneral Discussion
Still looking for answers
L LisaT
Jan Dollar The anemia without active bleeding can be indicative of Crohn's, as the anemia of chronic inflammation is fairly common with Crohn's. It also occurs with chronic pouchitis, so not terribly specific. Also, abdominal pain is common with Crohn's. Entocort may not be enough treatment for you. Perhaps biologics should be next on your list. Jan [ more ]
CTBarrister Confirmation is not likely something you are going to get or should expect. I am travelling down the same road as you, have had the Prometheus Test, the CT Enterography (both negative for Crohn's AND UC), yet scopes show ulcers and a lot of inflammation in my neoterminal ileum. Now I am going for an MRI Enterography on July 20 which, as I understand it, will be testing for thickening of the small bowel that would be indicative of further inflammation not seen on the scopes. Whether we have... [ more ]
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J-Pouch ForumsGeneral Discussion
Post takedown details
Kline84Kline84
Kline84 Ok thank you Marianne! After all the hospital visits and problems over the last year I get a little worried if things aren't textbook or considered the norm haha. I guess I start thinking this is to good to be true so there must be something wrong! Lol thank u for your input, this site has been a gold mine of knowledge. [ more ]
mgmt10 Oh believe me if you had a blockage or even a partial one, you would know it. You would have pain and vomiting. I think you are just one of the rare and fortunate ones to have so few bm's this early on. As long as you are feeling okay, thats terrific. [ more ]
Kline84 Well it's day five since my takedown and I am still pretty sore but the pain seems to get better the more I get up and move around. In the morning when I wake up I am pretty sore and if I sit for a long period it seems like things stiffen up and hurt. I am still only having 2-3 BMs a day and none at night. My stools are paste like in consistency and there is no urgency when I need to go. I have been sticking to light low residue meals. The old ostomy site is tender to the touch around the... [ more ]
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J-Pouch ForumsGeneral Discussion
Prometheus Test
FM Former Member
Former Member Thanks for everyone's responses! I am curious to see what the Mayo clinic doctors say about it also! We meet with them on Tuesday! Will keep you guys posted! [ more ]
Lorsall My prometheus came back negative for either UC or Crohn's, even though all my biopsies were positive for UC. I have since been told that the test is notoriously unreliable. I hope things go well at Mayo! [ more ]
suebear The Prometheus test has been in use since the 1990s. My surgeon told me, back in 2000, that there research was flawed and he didn't put any weight on their reports. I believe the Cleveland Clinic also is skeptical of their testing. Sue [ more ]
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J-Pouch ForumsHelp! Need advice now!
Gallbladder/ Joint pain?
FM Former Member
TE Marie Has anyone suggested you see a rheumatogist? I think you should go see one as it could be caused by some kind of arthritis. If you went on vacation I hope you are doing ok and that it is reducing your stress. [ more ]
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J-Pouch ForumsGeneral Discussion
Need advise about surgery
FM Former Member
kathy smith Dog Day/Fredbird - once again you make an anti-jpouch statement without any backup evidence. Everyone knows that you don't like your jpouch but that's a personal belief. It certainly isn't true for the vast majority of pouchers. kathy [ more ]
vanessavy Also BCIR and Kpouch options [ more ]
Former Member special thanks to CeeeeCeeee and Gmarie for sharing your experiences. Seems it is desirable if I can reduce prednisolone but might not be essential. I am facing problem of extreme tiredness and fatigue, muscle and joint pain also, I am taking 10 min to walk a distance people can cover in 1 min, pushing open a door or going up a staircase is becoming almost impossible by the day. I know that I have to hang in there and pass 1 day at a time for the next 15 days/ 1 month till my surgery. But... [ more ]
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J-Pouch ForumsGeneral Discussion
yeast infection questions
R Rebe0505
CTBarrister I cannot speak to female yeast infection issues but as to the male yeast infection issues, the sensitive areas or areas prone to infection are the legpits, the armpits, the groin and the area underneath the scrotum, because these areas all get moist during the day. I had a bad infection in all of the above areas in 2010, which took months to get rid of. I ultimately had to take anti-fungal pills. Since then the following regimen has kept it away: 1. Copious drying of these areas after... [ more ]
DON alias (Butt Blaster) Try using a Bidet It may bring relief It flushes water up and when I have internal itch it is like relief I have the $20 one on e bay it is worth the try hooks up easy and the cold water stops my itch instanlently you not only get used to the spray but will forward to it. [ more ]
Former Member Hi Rebecca,I`m sorry to hear of your predicament.I`ve had a severe yeast infection,I`m male by the way,that has not responded to any kind of treatment,in the fold of my belly and inside both creases of my groin area.All this mess happened after I gained about 80lbs. through 9 years of not working anymore a complication of my jpouch surgery and just decaying on my couch not trying to lose weight or anything.The end result being like I said a very very severe yeast infection which requires... [ more ]
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J-Pouch ForumsGeneral Discussion
Take Town Surgery July 3rd!!
FM Former Member
BlmBlp Sorry about the butt burn--it can be shocking. It does suck but will not last forever. Try coating the entire "area" with a skin barrier. I like Nupercainal. Lots of people use Calmoseptine, but I had too much irritation with it. A squirt bottle of water to rinse off that tender area is a life savior. I bought a Toto bidet (it was an anniversary gift from my husband ). Not cheap but worth every penny. Good luck and congratulations on moving on! [ more ]
Former Member I had my take down on 7-3. All went well I have an open wound where my stoma once was. (I almost miss seeing it there.) I was on liquids until today then regular diet and I came home. Now that I am home and eating the butt burn has really kicked in and holy hell it hurts. I didnt know it would feel like a burning burning a bm I thought it was more of a rash afterwords. but this sucks either way. I am trying to stay positive. just uncomfortable. I didnt wake up last night to bm however I may... [ more ]
mgmt10 Wow I didn't even know they did the j pouch there. It's a wonderful hospital. I'm just 45 minutes from New Brunswick. My GI doc referred me to a surgeon in Philadelphia so I still was close to home. Let us know how you made out....this is a wonderful site! [ more ]
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J-Pouch ForumsGeneral Discussion
FAP/Gardners survivors w/J-Pouches
RJG-RossRJG-Ross
Former Member I am 27 and was diagnosed with FAP in December of this year. I also live in NJ and had my surgery done in robert Wood Johnson Hospital in New Brunswick. My father(who got it from his mother) passed it to me as well as my brother. I had my temp ileo sugery on may first and on July 3rd had my take down. All in all it is going well. Painful BM's due to but burn but I am coping. I do know my father and brother both felt very alone about their medical situations and for some reason when I became... [ more ]
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J-Pouch ForumsGeneral Discussion
Takedown tomorrow finally!
Kline84Kline84
Holly M glad you came thru this ok. Had my takedown on April 18th. Am back to work and doing fairly well. Make sure you don't use their hard TP!! Have the soft stuff ready and use a rinse bottle if you need to so the output doesn't stay on your tush too long and cause discomfort. Keep us posted on your recovery. [ more ]
Kline84 It went well... I'm still pretty groggy from the anesthesia and in loads of pain at the old ostomy site. It's strang because with the first step I didn't have much pain at all. Now I find myself holding my breath subconsciously cause I'm so sore. No BMs yet but I have not drank or eaten anything either. [ more ]
Lizzie Knott Hope it went well. Be prepared the pouch likes to first wake up at night. [ more ]
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J-Pouch ForumsK-Pouch Korner
Align
vanessavyvanessavy
vanessavy My GI says overgrowth of bacteria in small intestine so I am on cipro now then will switch in 10 days to half a dose then maintain it with Xifaxin (sp). Maybe that will lessen when they remove more of it! (sarcasm about more surgery) [ more ]
Jan Dollar There is no one thing that works for everyone. Sorry they did not work out for you. Jan [ more ]
vanessavy Probiotics make me worse. I am starting to agree with the studies there just isn't enough to prove they help without a colon. I had to go back on a dose of cipro to kill the horrible stuff that was inside my pouch. Doing wonderful actually now. Started 5mg of Prozac for pain and it helps, makes me wired as hell though but I think that will pass after a few weeks like most SSRI side effects do. For now I have to go on and off antibiotics but VSL, VSL DS and Align were ok coming off... [ more ]
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J-Pouch ForumsGeneral Discussion
Help with talking to G.I.
SubskySubsky
Subsky Alright guys I have an update! I saw my GP today and received the results of my gastroscopy. Everything looked good, and both the biopsy for the stomach and upper duodenum came back normal. Got a lab form for a complete blood work up, and have an appointment to see my GI august 2nd. By then I'll almost be done tapering off of prednisone, and we'll talk about biologic treatment options. As of now I feel great, no pain/urgency from my pouch, so now all I can do is be healthy and wait till... [ more ]
Subsky Since this morning I emptied my pouch for the first time today just now, it was fully formed, and it's 8pm. Have had ZERO pouch pain today, even went for 4 laps around the track, and played tennis for the last hour. So as of now fingers crossed it stays away! I just got back from a trip on a plane to visit my sister and mom, that trip alone with stress could have been causing my issues. Hopefully it wasn't even pouchitis! We will see. Yeah I'm ok with the shot hurting, I have a crazy high... [ more ]
Jan Dollar Sounds like a good plan. Just one thing to remember, though. There is no such thing as a biopsy that is negative for Crohn's. What I mean by that is that while there may be markers that mean a positive diagnosis for Crohn's, mostly granulomas, since the other things, like transmural inflammation can occur in UC. So, biopsies cannot actually rule out Crohn's. Granulomas are found in less than half of those with Crohn's, so the diagnosis is usually more of a preponderance of the evidence. I am... [ more ]
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J-Pouch ForumsHelp! Need advice now!
To heck and back! Please give me any opinions!
P peewee80
peewee80 thank you so much Jan! Just some insight makes me feel better. I have had a couple other blockages and all the symtems were the same except for the abdominal fluid. The doctor here told me there is only a tiny amout in a womans abdomine and he said their was a lot. Not trying to make a mountain out of a mole hill you know just DONT wanna do that again! [ more ]
Jan Dollar From what you describe, this sounds like a small bowel obstruction, not too uncommon with intestinal surgery. It can be from adhesions (internal scarring), which typically can cause kinking of the bowel, and the obstruction you had. The conservative treatment you had is best, because surgery can lead to more adhesions. Sometimes surgery is required, but it looks like you were lucky. There really is no way to predict if this will recur or not, and it generally has nothing to do with what you... [ more ]
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J-Pouch ForumsGeneral Discussion
Remicade
FM Former Member
Lizzie Knott I did not have success, but both of my twin 18 year old cousins have had great success. It is an individual thing. [ more ]
fleanut If he's had 5 infusions, then he should have been on it for several months now, which means it's clearly not working. It sounds to me like they're just throwing whatever medications that seem somewhat relevant at him. I'm thinking you might want to get him to a better hospital or j-pouch specialist. And you didn't mention anything about immodium or lomotil, but either or both of those together would be worth a try I think. [ more ]
tammykathleen Hi Sandra, I had UC and Remicade failed. I had the surgery 5 years ago and then last winter I was diagnosed with Crohns. I didn't want to really try the Remicade again, but I did. Once again it failed. BUT, I started the Humira and it has been a godsend! It is much easier (as it is a home injection, not a hospital infusion), has far fewer side effects for me, and has given me my life back. I was wary because I thought that since I failed with Remicade, I would fail with all biologics. Not... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Don't know what this is
S Sara1986
TE Marie Congratulations for your new baby My internist told me that the antibiotic flagyl I took to get rid of my C-diff would not help a sinus infection. I always thought an antibiotic was good for every thing with some better than others, depending on what was wrong with you. I just got over a C-diff infection that took 2 rounds of flagyl to kill. She didn't want to put me on an antibiotic because the kind I need for my sinus infection could cause my C-diff to flare up again. So if you start with... [ more ]
Sara1986 I meant don't [ more ]
Sara1986 Thanks Tammy! I have an appt with my gi next week. I just finished my last antibiotic from my sinus infection today. I hope I do start to have the runs again:-( hopefully I will feel better until I see the dr [ more ]
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J-Pouch ForumsGeneral Discussion
Spasms/Contractions with Jpouch? Before Jpouch?
P Pkitty
TE Marie Pkitty, The Mayo doctor that did my flex pouch scope said when the cuffitis goes away my pouch was built well and I should only have to go 4 times a day, versus the 10-15 I'm now going. I don't have urgency like I did before the surgeries but still have to go a lot now. It is uncomfortable I need to get rid of the waste ASAP. Sorry I didn't explain that too well. [ more ]
Pkitty Thanks guys! Toughenough - thats not bad at all - only 4 BMS a day with no urgency even with IPS? So then, how does the IPS affect you? What does it cause? [ more ]
CeeeeCeeee I agree with everyone who says you'll know when you're ready! I held off three years while I tried everything my GI doc would let me try. He was very kind! Finally, he sent me to a colleage of his at Cedar Sinai who heard my story, examined me and then said I had learned to cope too well. She asked me what I was waiting for? Well....that did it! The final treatment I tried was a medication that gave me pancreatitis. So much for that. By the time my surgery date came I almost ran to the... [ more ]
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J-Pouch ForumsGeneral Discussion
Itchy external hemorroids
B bratcat
Donna H Have you ever tried a squirt bottle to clean your area instead of wiping which can cause iritation to an irritated bum. I use cold water and try not to scratch because the more you do, the itchier you can become. Have you tried Calmoseptine? [ more ]
bratcat Thank you. I guess I'll just continue what I've been doing. It's annoying because it usually itches after I use the bathroom, and sometimes when I'm out, there's not much I can do. I can only carry so many wipes with me. [ more ]
CeeeeCeeee Doing what you are doing plus slathering some barrier cream all over the external hemmorroids right after cleaning and drying (and after each b.m.) helped me relieve the itch. Also spraying the area or sitz bathing in as warm ( hot) water as you can tolerate also helps relieve the itch. Follow up with drying thoroughly and applying cream. It may seem like a bother, but....if it helps, it's worth it. [ more ]
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J-Pouch ForumsGeneral Discussion
Ideal Time Gap between Step 1 and Step 2?
P Pkitty
Former Member oops i meant abdominal [ more ]
Former Member I had my surgeries in three steps. It was 8 months between step.1 to step.2 would have been longer but my stoma prolapsed. It didn't affect my anal muscles cause they left 15cm of my colon in at step.1 and attached it to my front admonial wall so i still had active UC for those eight months so i was still passing blood and mucus(sorry bit gross). Then it was 4 months from 2 to 3 which was nearly too long cause my j-pouch started to shrink and they had to inflate it back to proper size. I had... [ more ]
Ryeliz13 For me it was only five weeks and one day. I was supposed to wait 6 weeks but my stoma closure was sewn too tight so nothing was passing through and I chose to have it sooner and I was miserable with the illeostomy. That was last thursday and now I'm feeling great and already love my j pouch! My doctor said that it helped my pouch with a shorter time between the surgeries going into the first surgery relatively healthy and nourished. He also said in some patients he had to go in at three or... [ more ]
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J-Pouch ForumsGeneral Discussion
Humira: Does it really help long term or does it just mask inflammation?
xitalianchick01xxitalianchick01x
Jan Dollar They didn't used to think so, but the newer evidence indicates that it may stop or slow progression of inflammatory arthritis. It has been shown to help heal fistulas and keep Crohn's in remission. It does not mask the inflammation, but blocks it from occurring. It is not as indiscriminate as prednisone and does not damage the other organs like prednisone. But, there may be long term negative effects. Not a given, but it can happen. The main ones, I am sure you are aware of, bone marrow... [ more ]
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J-Pouch ForumsGeneral Discussion
so upset
Lizzie KnottLizzie Knott
Lizzie Knott He did give me hope, and it was dashed today. I have the ankle veins too. I had already had veins stripped before surgery, regretting that too. He did say I have some good ones, but the left does the work. He said exercise will help too. I was doing good, still having to go slow since scar tissue. It helps to know I am not the only one. Thanks Jan [ more ]
Jan Dollar I have the same thing. A totally clotted vein from a DVT in 1995 (post op). The leg has since been swollen as compared to the other, ugly veins around the ankle, and I have been told by my surgeon don't EVER get my veins stripped because my collateral veins are all I have left. So, days of shorts and nice legs are gone, gone, gone. But, I don't have to wear support hose all the time anymore. I only wear them on long flights now. I don't know who told you it was possible to open a long ago... [ more ]
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J-Pouch ForumsGeneral Discussion
Number of bowel movements three weeks out
S SteveRM
CeeeeCeeee I used Balneol when I was in the throes of UC. It was a very gentle, cooling cleanser and easy to use since it didn't stick as much as the Calmoseptine type ointment. Best wishes on getting a hand on the butt situation! [ more ]
SteveRM I just contacted my surgeon and he recommended Balneol and over the counter cleansing cream for both men and women. It does have an anti fungal incredient. [ more ]
shawne h Hi A cream my Dr. gave me a presc. for in Canada at least is called Viaderm KC drug company is Taro I found it excellent it is a combo of corticosteriod,anti-inflammatory,antibacterial as well antifungal. Because it has a steriod I would use it as needed not on a forever after every BM. I found it cooled things down very quickly. [ more ]
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J-Pouch ForumsK-Pouch Korner
Post op pain
EricEric
vanessavy I was on 80 miligrams of Oxy and a fentalyn (sp) patch for about 2 months post op. I was down to maybe 10-20 mg by the 3rd. I had horrible pain up until 4 months, surgical that is. Just like all surgeries, every week it gets better then eventually we start to forget how bad it was. My butt pain I think was the easiest to cope with and I had a donut pillow to sit on when I returned to work about 3 months post op. [ more ]
JaniceM You are right on track. The bumm surgery is brutal in as itself. Having the constant cath starts making the valve and stoma very sore but you gotta do it. Once it's out it will still be sore as you have to empty often. As time goes on and you empty less, it all heals up and gets some rest and settles down. I still get very sore if I hitch up my constant cath for a few days if I'm sick with the flu. It really takes a full 2 - 3 mos just to start the healing. The pouch maturing causes so much... [ more ]
Jasmine 2 Hi Eric...hang in there!!!! I had my Kock Pouch done in 1978, and I think I was in the hospital for 3 weeks hooked up to a suction. They do things differently now. I do remember my butt taking a long time to heal though, in fact back then I was told it could take 1 year, but I'm sure that is different now too. I hope you keep improving and things get better for you soon....xoxo [ more ]
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J-Pouch ForumsHelp! Need advice now!
Just had step 2 of 3 J Pouch, please read
BD Blake D.
mgmt10 Glad you went to the doc and got it figured out and taken care. Hope you feel better real soon! [ more ]
Blake D. Hey guys! You are some knowledgable J Pouchers, some of you hit it right on the head. I woke up today itching my skin off, I had a really bad rash on my back, stomach and a few other places. My wife took one look at my back and I could hear her panic. Then we looked at my incision and there was still a lot of puss and stuff coming out. We went to the hospital and one of the colorectal doctors got me in right away and was pretty sure the incision was infected. He packed the incision which I... [ more ]
Jan Dollar The rash (sounds like you had hives), itching and swelling sounds like a drug allergy, so you need to call the doctor on that. Could be an antibiotic you are no longer taking, since the reaction can occur after you discontinue it, but it could also be the pain medicine, so call right away. Even if you were taking the same medicine in the hospital with no problem, you can develop an allergy at any time. You also need to report the oozing from the incision, unless it was happening before... [ more ]
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J-Pouch ForumsGeneral Discussion
Long time Jpouch - can it "expire?"
P Pkitty
CeeeeCeeee Thanks for sharing, Linda! It helps to know we are not alone in our "crazy" thoughts! [ more ]
Former Member Oh my goodness. I have been thinking those same thoughts- so glad it's not just me!! I even told my husband and my son-in-law about it as he is a general surgeon. I told my daughter if I could not get up to go to the bathroom that I probably needed an ileostomy. I agree with Jan that it can be challenging taking care of an ileostomy, but if you do have caretakers and they don't change your diapers or whatever fast enough or often enough, your skin down there can get eaten up real fast by the... [ more ]
CeeeeCeeee I'm glad "we've" had this discussion before I make a rash decision to revert to an ileostomy simply because of age! Then again, I'd do so in a heartbeat if my J-pouch gave me unresolveable trouble. I learned to be quite a pro at managing my ileostomy during the year I had it. [ more ]
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J-Pouch ForumsGeneral Discussion
Checking in & Need advice
S SimpleX
CeeeeCeeee I see where my Calmoseptine suggestion might make the problem worse. Thanks, Jan! Sorry! [ more ]
CeeeeCeeee Every now and then I, too, get the itch you describe. Once while examining me my surgeon was sort of surprised when I told him not to stop because he was taking care of relieving my itch! He told me an anal itch is usually caused by "seepage" and to try to keep the area expecially clean. Sometimes, in addition to cleaning the area frequently, just keeping a bit of cotton "up there" helps along with anti-itch cream or barrier cream such as Calmoseptine. Best wishes. [ more ]
Jan Dollar It is quite possible you have a yeast/fungal infection. Try over the counter creams first (like miconazole, same as athlete's foot cream). Give it a week or so and if that does not work, call your doctor for something stronger. The barrier creams can lead to fungal infections sometimes. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Takedown tomorrow!!
LB Lisa B
Lizzie Knott Good luck tomorrow!! [ more ]
Former Member Hope it went well! I have my takedown in August. Just had step 1 on June 8th. So far doing well, other than being re-hospitalized for an obstruction. Lizzie, Where was your scar tissue, and was it an open surgery or laproscopic to remove it? HOw are you doing since? What were the symptoms of having scar tissue problems? [ more ]
Lizzie Knott Hope it went well. [ more ]
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J-Pouch ForumsGeneral Discussion
Step 1 Surgery Tomorrow Morning
S Srf1
Former Member Good luck to you! I just had step 1 on June 8th. Doing great! Keep positive and GET UP AND WALK AS SOON AS POSSIBLE! I got up the very night of surgery and walked, and was able to go home after 3 days because my gastro-intestinal system woke up very quickly. Walking is the key. Yes, it hurts to get up those first few times, but just dose up on the pain meds right before and remember that getting through that pain and just walking is key to a quick recovery! Also, make sure the ostomy nurse... [ more ]
kathy smith Well of course it's starting to freak you out. You have a pulse after all. Sending heavy duty vibes that all goes absolutely perfectly. See you on the other side. kathy [ more ]
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J-Pouch ForumsGeneral Discussion
Sleep
Mesa PoucherMesa Poucher
Jake McCoy ❤️
SBS I've found that the need to go at night changes as you adjust to your pouch & your pouch adjusts to you. The first 7 yrs or so I was up every night pretty close to 100% of the time; the next 7 yrs or so, 50%; the last 7 yrs or so, rarely (though now I have to get up and pee...lol). The keys for me are (1) eat early (2-3 hrs before bed); (2) use a fiber supplement (I take Metamucil); (3) reduce fluid intake (I try not to drink anything after dinner); and (4) the loo is my last stop before... [ more ]
azmedic Hey Chrfor, yeah I have had that problem in the past too, not always, but it does happen. I can count on 1 hand the amount of times that I've slept through the night since my takedown surgery and that was 3 years ago tomorrow. Wow, I just realized that its been 3 years already. I am going to see about donnatal and see if that works. It would be amazing to sleep through the night. I have another question for you guys though. Do you have any problems sleeping on your side or stomach since your... [ more ]
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J-Pouch ForumsPouchitis
Could This Be Pouchitis, And If So, How Do I Treat It?
K Kobe
Jan Dollar This sounds like pouchitis to me too. I don't know how it works in Australia, but in the US, we can usually get a prescription by just calling our doc and describing the symptoms. No need for an office visit or scope first time out. Now, if the antibiotics do not work or the symptoms keep returning after stopping antibiotics, then a scope is in order. Studies have shown that supplements do not work with acute pouchitis. If they do, then you didn't actually have pouchitis. I usually like to... [ more ]
CTBarrister Some people have used probiotics but usually only after the pouchitis is in remission. I am not sure if you can get pouchitis in remission using natural treatments. I have tried a few like aloe vera juice, straight probiotics and they did not work. If the pouchitis is not effectively treated it will get worse. [ more ]
Kobe Are there any natural treatments available? I'd rather not have to see a doctor unless it gets much worse. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Affrent limb syndrome
L LisaT
Jan Dollar You had me going there at first, since ALS is amyotrophic lateral sclerosis (Lou Gehrig Disease). Not usually associated with the j-pouch, but one of our moderators, Dave H, actually died from it. But, I see from your topic that you actually are talking about afferent limb syndrome, which is a structural defect in the small bowel entering the pouch that causes obstructions. Surgery is usually needed to release adhesions or repair the pouch to prevent repeated obstruction. It is not common. [ more ]
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J-Pouch ForumsGeneral Discussion
gmarie's J-pouch removed
gmarie1208gmarie1208
kathy smith I'm so sorry she's back in the hospital. Sounds like ileus. Hopefully they'll be able to help resolve it with minimal invasiveness. This has happened to quite a few people. kathy [ more ]
gmarie1208 gmarie asked me to post this for her: "I spoke too soon & am back in hospital w/ worst pain I've ever had. On morphine. Dr thinks it's a partial blockage." MsI [ more ]
KangaRoe I am so sorry to hear about the removal of your pouch. I was originally diagnosed as having UC but I too have Crohn's. I have had 5 operations over the years but I am fortunate that I still have my pouch. Once I found out I had the Crohn's I was put on Pentasa which is not a biologic. I am feeling much better and this is the first time I have not had a bleeding episode or Pouchitis in years since I first had my pouch. It is keeping me in remission pretty well. The doctor did say if I have a... [ more ]
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J-Pouch ForumsGeneral Discussion
Freaking out!!!!!
C Cate87
TE Marie Have you tried warm broth to put the heat inside? I think apple or white grape juice is good as well. Some on here say to move around a lot to dislodge it. Maybe you could do a search on here and find some more suggestions. [ more ]
beckysmom Sorry you are having this trouble. If it is a blockage, when my daughter had them she would walk around a lot and also put her hips in the air, get down on your knees, and sway from side to side hoping to move something along. Are you having urgency? She usually has the feeling like she has to go but nothing or hardly anything comes out until it passes. Maybe you can call the dr's service and first ask who is on call, it just might be your dr, if not you can tell them to forget it, you'll... [ more ]
Cate87 Going to see my doctor tomorrow. It's almost 3pm and I haven't had one bowel movement yet. This hasn't happened. I haven't eaten since last night in attempts to rest my bowels. Being hungry is making me feel ten times worse. I feel awful. Cramps are still present with gas pains but nothing is passing through. I'm so upset and aggravated. [ more ]
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J-Pouch ForumsGeneral Discussion
Disability
ManchesterManchester
Frances I have been on short term for 8 weeks now and must exhaust it before i can go for Long Term disability. I have money taken out for long term and thank god i have done that. I talked to someone in my HR dept and she said if i get approved for long term through work. I have to still apply for SS disability. She said i can be on it with work and then after 2 years is just saying i cant work there and then i have to prove i cant work anywhere after the 2 years. Go to specialist at Cleveland... [ more ]
Former Member I`m so happy for you manchester.I got approved about 7 years ago now and thats for life, I hope,the way things are going.I to got back pay $27,000 canadian I believe it was.But once the Mrs. got her grubby little hands on it I was back to being poor just like I was the day before I got this lump sum.I`m just joking,for what my wife put up with all these years and staying beside me through thick and thin and being a harbour for my soul she deserves a million times that amount that I got back pay. [ more ]
TE Marie Manchester, I'm sorry you are having all of these problems. My UC was diagnosed 14 years before my surgeries and had it years before it was finally diagnosed. I have PTSD, depression and anxiety as well as fibromyalgia and a few other autoimmune problems. I know it's hard for people to understand why we have PTSD and such as they are all hidden disabilities, until we loose or gain too much weight. I found out in counseling that this was not the first trauma in my life and am having to deal... [ more ]
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J-Pouch ForumsGeneral Discussion
Long Term Disability
FrancesFrances
TE Marie Frances, I got approved by my long term disability insurance company in 2 months, I didn't file until I was out of work for 10 months and they paid me back to the last day I worked minus the waiting period. They sent out requests for records to all of my doctors and in the initial application my Internist sat down and filled her part out during one of my exams. I am in the process of them going around and updating everything to make sure I'm still unable to work. I finally applied for social... [ more ]
Frances Thanks so much for your support. I have 2 letters from 2 of the three doctors and 1 is from the expert from Cleveland Clinic. It took a year and a half. We cant make it that long with out my income. I know i will get denied from Social security but i hope not from my employer that i pay for with every check. I have been on short term for 8 weeks now and get 65% of my pay and i will run out 8-15 i think and then they send me to long term. Im so stressed about what will happen that i cant... [ more ]
Former Member Hi Frances,I from Canada and I think both Countries are pretty much the same when it comes to Long and Short Disability issues.It took me about a year and a half to finally get approved for my long term claim.It got pretty depressing some times when dealing with these heartless goons but once I had all my eggs lined up and an Iron clad positive report meaning,my doctors report enphaticcaly saying that yes I was 100% disabled because of my pouch and no longer able to do any type of... [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch runs life as well
R RLC
RLC Thank you - I am still battling. On the picc line but now running 18 hours. I get a 6 hour reprieve from being hooked up! Still very weak! I am eating a little now. My mornings are really tough. Very sore internally and alot of bone pain in the morning. I finally stopped the steroids a couple of weeks ago and I think that is my problem. I do not do well weeks after being weaned off of steroids. Not sure what is next for me....trying to keep the faith! Roberta [ more ]
azmedic Hey Roberta, Things will get better. I had my takedown 3 years ago tomorrow. I went back to work full-duty 2 months later. I am a firefighter/paramedic and let me tell you, the first couple of months being back on the truck doing 24+ hour shifts were not fun, but they got better with time. Our schedule changed a few months back on the truck and we went to a 48/96 schedule, meaning we were on for 2 off for 4 days. I eventually got back to working 3 days in a row without any complications... [ more ]
ElmerFudd Roberta, I am 6'2" and went into the hospital pretty sick in 2006 weighing a nice 185 pounds or so. When I got home 19 days later, after a week of fluid runoff (I peed SO much for a week), I weighted 148 pounds. So I can totally relate. I looked at my legs and thought, "Who am I anymore?" My doc prohibited immodium for quite some time, and nothing helped me for months. I can relate to the 20-30 times a day, and up every hour at night. That was normal for me and I was told by everyone it... [ more ]
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J-Pouch ForumsGeneral Discussion
Question for all Jpouchers on Step 1 food timeline
P Pkitty
mgmt10 An obstruction can happen at any time but you are most vulnerable right after surgery. [ more ]
Pkitty Thanks all for the great info! With bowel obstruction, is it correct that it typically happens (if it's going to happen) in the immediate weeks after the surgeries? And then you are safe? Or bowel obstruction can happen anytime even as the years go by? Also gstubbe - what happens with soda and a bag? Stoma irritation or something? [ more ]
Former Member I ate pretty much what I wanted a few weeks after surgery. I watched my intake of mushrooms, nuts and coconuts. If cautious of something then just eat it in moderation. I drank soda but not as often, and never close to bedtime cause boy ole boy gas and a bag not good lol. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Butt burn forever?
C Cate87
TinCan A reasonable expectation is that the butt burn will go away and you will get better. It took me a good 3-4 months before it began to dissipate. Now, it is not a problem at all (8 months out). If you don't already have one, a bidet helps a lot. [ more ]
CeeeeCeeee For me, butt burn seems to be directly related to having eaten specific foods which cause the problem. Once the culprit food is out of me...the butt burn leaves. So, if you can identify which foods, etc. might be causing your butt burn you can modify when/how much you eat them and if you continue to do so....prepare your butt prior to eating them with a barrier cream and continue using it until the food has completely passed out of you. Different foods seem to cause butt burn for each of us... [ more ]
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J-Pouch ForumsGeneral Discussion
Humira Hooray!
tammykathleentammykathleen
Former Member That is Fantastic news [ more ]
Breezie I love my Humira, too. I use it for Ankylosing Spondylitis and had been on a two-week interval but when I was pregnant and breastfeeding, my doctor and I agreed to an "as-needed" basis, since the Humira kicked in pretty quickly when I used it. I am fortunate (supposedly) to be keenly aware of when things are starting to brew disease-wise, so for the past six years, it had been going well. I guess I got a little too lax (managing to get by with one injection every two to three months) because... [ more ]
Jan Dollar Very good news indeed. I also was one of those who did not last the two weeks Humira was supposed to work. I was on it for enteropathic arthritis. My rheumy told me that those with IBD tend to need more frequent dosing. I did pretty well with the weekly dosing, but once Simponi was approved for AS, I asked to switch (monthly injections). It has been over a year and I am doing better on the Simponi than Humira, although I wound up injecting every 3 weeks instead of monthly at first, but now... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
VSL#3 DS to give away in Dallas/Forth Worth
B beucfree
beucfree Copperhead, I don't know about the differences in brand between USA & Canada, sorry. I hope my explanation in previous post answers your other question. Thanks! [ more ]
Former Member Hi beucfree I`m from Canada and just started taking the VSL#3.What did you mean when you said it wasn`t working with your pouch?Also is it true that the Canadian brand is far less potent than the American one?Thanks. [ more ]
beucfree AP- Usually within 30 minutes after taking VSL, I have to go to bathroom and, usually only a little bit would come out. For hours I would feel I have to go but don't feel emptied. Also, first several day of starting VSL, I had excess gas and high frequency, which improved over time. With Align, I don't have those issues. I don't have to time it because I can take and leave home immediately. Whereas, with VSL, I usually don't leave home for an hour or so. Align has no impact on my frequency. [ more ]
See all 5 replies...
J-Pouch ForumsK-Pouch Korner
Testimonials
skn69skn69
vanessavy I think it would be awesome if it was global. I am sure there are people in other countries that are wishing they could have a continent ileo. I see people ask all the time on forums. Doctors without borders but for people with no colons. I do branding, identity and marketing for a living and run my own business that supplies graphics for businesses and homes so sure I could help somewhere along those lines. [ more ]
JaniceM Great idea. I sent a formal letter to all the surgeons on the american side at http://www.fascrs.org/ and NO ONE replied. I think the challenge is huge. It will start with GI dr knowledge, ET nurses (for those like me that were raw from allergic reaction to adhesives, etc.) and the volume of need. I do know that at our Take Steps walk, a top GI dr at University of Irvine recommended only a KP and for his patient to see Dr Worsey at Scripps or Cleveland Clinic. I got referred in 1980 from my... [ more ]
ke353 I think that would be great! Maybe with the help of the internet these days the k-pouch could become a bigger thing? [ more ]
See all 5 replies...
J-Pouch ForumsK-Pouch Korner
Probiotics & Excess Stoma Mucous
Dixie from SaskatchewanDixie from Saskatchewan
vanessavy The morning is the worst for me. I am too dry to get anything out. I usually drain at noon after I have hydrated. [ more ]
lesrich1 I irrigate all the time.In the morning I often wake up very dry even after irrigating at night. I have eliminated dairy almost completely from my diet and that has made a significant drop in the mucous discharge. That is not the reason I did it; just another plus. [ more ]
vanessavy Lol No I have wetness more after I irigate at night, during the day not that much. Align has cut down. I use one dressing a day. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
5.5 weeks post-op - surgery 1
U 1970UC
kathy smith You are doing really well considering you're dealing a loop ileo. And yes, the j-pouch function is much different than the loop ileo function. kathy [ more ]
mgmt10 Glad you are doing well! I hated that loop ileo. Mine ran like a faucet 24/7. It's true...you cannot compare the ileo output to when your j pouch is hooked up...it's so much less. Good luck with the remainder of your journey! [ more ]
See all 2 replies...

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William J. Johnson
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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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