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J-Pouch ForumsPouchitis
do ALL pouchers do better with antibiotics?
fqfq
Epic Scotsman The small intestine isn't designed to carry the same kind of bacterial load as the colon. Since the pouch is formed from small intestinal tissue, the increase in gut bacteria could cause a few problems here and there while the pouch is adapting. However, in the long run it'd probably be better to allow the pouch to adjust to the new bacterial presence, rather than take antibiotics long term (unless they are truly needed, of course). So, in a way, all pouches probably do function a bit better... [ more ]
clz81 I'm sure there are many exceptions, but i too have always thought this to be true for the majority. Its the bacteria in our pouches that causes the gas and whatnot so getting rid of it should quiet everything down. However, if someone doesn't truly need it, I would not advise taking it. Once you take it, your intestinal flora is changed, and sometimes a challenge to get back to where it should be. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Heading to Cleveland Clinic....very uncertain!
FM Former Member
Guest Kalady did mine 4.5 years ago. I like him. Dealing with a sinus from pouch now, Shen has done 2 needle/knife procedures and looking at a few more. Shen feels if he can't fix it, I need to have surgery. Dr.Kalady does not agree. Have not had any serious issues just some inflammation. [ more ]
Former Member My wife had total coloectomy and rectectomy with jpouch at Cleveland clinic in Ohio by Dr Kalady. She has myh colorectal cancer and they are heading up research on it. Kalady was very competent, we were overall very happy with staff and facilities as well as surgical results and we are both in medical field so that is saying alot. Hope that helps Terri and Kristina [ more ]
Rebe0505 yasman florida cleveland clinic is not the famed one which is in cleveland and that is a great clinic ..the famed gi ..dr. bo shen is there as is some of the most knowledgeable surgeons.. rebe [ more ]
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J-Pouch ForumsGeneral Discussion
Lump near anus
Dave TexDave Tex
Spooky First thing that came to mind was a fistula, but it could also be an abcess. Either way, it's good you've made the appointment and I hope you can get it sorted out! [ more ]
Former Member Cyst? Fistula? Those all come to mind. Make sure you soak the area, that will draw anything remaining out, Epsom salts are good for keeping it clean too. [ more ]
Dave Tex Hi Vanessavy. Although gross, it erupted this morning. White goop then blood then nothing. Happened while cleaning after bm. Ouch! Got tp and squeezed just a bit, that is when it really squirted. Lump still there but, smaller. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abdominal cramping, back ache, hard to go! Help!
S SloanNYC
Solomin Hi SloanNYC, I have very similar symptoms; my back hurts, my hip hurts, My leg is numb and I have difficulty with BM's. I had an MRI done and it appears that I have pinched nerve. I still say the pain is connected to my bowel issues. I am doing therapy (chiropractor) and it is helping a little. Also taking Lyrica. Please let me know how things develop. Maybe an MRI would be beneficial. Good luck! Solomin [ more ]
SloanNYC Went to Gastro -- checking bloods for infection. I have major pain in hip, lower/mid back and some pain in upper left leg. Icing the area and PT seem to help for short periods of time (few hours or less). Going to the bathroom once a day now and straining. If there is no infection and I continue to have this pain, could backpain/hip flexor strain be so bad that it would impact intestines/stomach? [ more ]
liz11 wine works too. [ more ]
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J-Pouch ForumsGeneral Discussion
Stupid problem!
FM Former Member
vstRN I've had some luck sitting on a chair with my knees pulled up to my chest. Kind of annoying but it works sometimes. [ more ]
Guest Tracy this problem isn't "stupid" as much as it's annoying. I understand what you're going through. About the only time I've been able to pass gas while standing on 2 legs has been by accident, such as when I'm really active. In those rare cases the gas is released without me even trying to pass gas. Otherwise, the best you can do is try to keep away from foods that produce gas. I understand how that's like walking thru a minefield too when you have a J Pouch. I'm sorry if you've heard that... [ more ]
Guest Tracy this problem isn't "stupid" as much as it's annoying. I understand what you're going through. About the only time I've been able to pass gas while standing on 2 legs has been by accident, such as when I'm really active. In those rare cases the gas is released without me even trying to pass gas. Otherwise, the best you can do is try to keep away from foods that produce gas. I understand how that's like walking thru a minefield too when you have a J Pouch. I'm sorry if you've heard that... [ more ]
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J-Pouch ForumsGeneral Discussion
Fluid build up post op
vanessavyvanessavy
liz11 rachey. seems like that might be something your surgeon should check out. Any fluid buildup like that could be infectious. I had fluid buildups and abscesses draining and more abscesses bursting after my last surgery. It was so serious they got an infectious disease doctor involved. Just sayin.. might be something your surgeon should take a look at. [ more ]
Former Member I have fluid build-up right now and its just coming out through my staples on my wound site. The home healthcare nurse said its not a concerning color and its normal after surgery. It was very painful when it popped but she said it should go away on its own. [ more ]
blufnger03 I had fluid buildup after my 1st surgery. It actually ended up popping on its own, although it was really painful and drained for like 2 weeks. They discovered it through ultrasound. [ more ]
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J-Pouch ForumsGeneral Discussion
Butt Burn and what's your "cure"
B Bethie
Bethie I think the keeping dry thing is probably a huge help - she has the creams, does take nice hot baths and hopefully she will learn to manage the amount of movements as well as the tushy burn! [ more ]
JenniferG ohhh ya, baths are great especially in the first few months when its hard to get relief! [ more ]
Jpouch8888 Sitz-Bath with very warm, almost hot water. Or a hot bath! Works wonders. [ more ]
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J-Pouch ForumsK-Pouch Korner
Who has had a valve revision?
vanessavyvanessavy
vanessavy Everyone guesses it is scar tissue. I have a "speed bump" I call it at the entrance of my stoma so I think that is scar tissue for sure. It also feels like my stoma is a suction cup around my catheter at times, like it shrunk, no idea what to do for that, stretching it or leaving a stent in doesn't work anymore, i just had my 2nd pouch scope yesterday in 3 months and the valve is good just on an angle. I guess for now since I just had surgery this local Kpouch surgeon is going to try to do... [ more ]
Tokyoexpat I had my K pouch done in 1980 and have had revisions in 1998 and 2006. Both times problems began when I had trouble inserting my catheter. [ more ]
AFmom I have had my BCIR since May 2007, after about three years developed some scar tissue around stoma opening, doctor tried to repair without cutting me open, just didn't take, had stoma revision this past Feb, he had to cut me open again thru the old scar, but was able to convience him to get rid of those extra two lumps on either side of the scar, so everything works great and I have a flatter tummy, shorter hospital stay than original, no regrets even with new scar. [ more ]
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J-Pouch ForumsK-Pouch Korner
smell proof containers for tubes
D dpol
Tokyoexpat I have found tobacco pouches to be the best. [ more ]
grandma64 Whenever I shower, I intubate first thing, then I rinse out the tube, throw in on the floor of the shower while I wash! That way it's getting a cleaning at the same time as me! My tubes stay pretty clean and I haven't ever noticed a smell. [ more ]
JaniceM Yep, my cath gets a bit funky after a while....you can soak in the sink with bleach not too strong to be sure it doesn't eat up the cath holes. I just keep in zip lock bag. I like Jasmines idea of pencil case! what about a peice of cotton with a big tea tree oil as that is a natural antiseptic and shouldn't hurt stoma. Try not to worry about it. [ more ]
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J-Pouch ForumsK-Pouch Korner
Food Questions?
grandma64grandma64
TrinaS I second Sharon's diet -- perfect for me. I need to avoid melons and celery (not for gas for obstruction) [ more ]
vanessavy I had a lot of those issues now I don't get gas but I am on Omnicef, an antibiotic. Probiotics made my issues worse and there isn't enough science that shows they work without a colon present. For my bacteria overgrowth I am on small dose of antibiotics. Minute I go off them it is a world of hell. Maybe you have some overgrowth or pouchitis? I can tell when mine is bad off of antibiotics. The smell alone is my indication. [ more ]
skn69 I use the GNC kind or something from Walmart and don't bother with fancy, expensive stuff. It works well for me but sometimes I need to crush them a bit or they don't digest before going through. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Please describe the J-Pouch improvements
fqfq
Epic Scotsman I'm gonna go ahead and talk to fq here (this is his thread after all). fq - I know just how you feel. I had my takedown just about 7 months ago and at the outset, I had no idea what to expect. I'll admit, it scared the crap out of me (no pun intended) but the only thing to do is let time pass and see what unfolds. I urge you to fill that time with something enjoyable, it really does take your mind off things. Everyone is different. Take both the good and bad stories on this site with a grain... [ more ]
Guest Oh I see it's really wrong for me to express my own opinion here Kathy just because it's different than yours. If you feel so strong about that please move to Iran or some other place that doesn't permit freedom of speech. You'd just love their justice system there too since you're not entitled to a fair trial. You must love that Kathy since ever since I started posting here you've accussed me of being somebody else. You don't even have one shred of evidence too when it comes to that. And... [ more ]
Guest Oh I see it's really wrong for me to express my own opinion here Kathy just because it's different than yours. If you feel so strong about that please move to Iran or some other place that doesn't permit freedom of speech. You'd just love their justice system there too since you're not entitled to a fair trial. You must love that Kathy since ever since I started posting here you've accussed me of being somebody else. You don't even have one shred of evidence too when it comes to that. And... [ more ]
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J-Pouch ForumsGeneral Discussion
Long term Humira use....?
CatajaCataja
CTBarrister Cataja, I am not really sure which area of the ileum is getting inflamed so as to cause these twice yearly obstructions, but my recent MRI Enterography discovered a segmental thickening and narrowing of my ileum just above the J Pouch - suspected, but unproven Crohn's. I was warned flat out that if it got worse, and narrowed further, I would be prone to blockages and possibly twisted bowel, which killed Maurice Gibb. So I am on Entocort with the the hope that we can bring down the... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Doc doesn't kids..i have one with an ex and now i'm getting married again
ChelleHChelleH
Comber Why does your doctor not recommend having kids? I guess I am not understanding that part? [ more ]
rockandroller Another vote for surrogate. Seriously, it's still your baby. [ more ]
lina Don't rule out the surrogate. You can do a gestational surrogate with your egg, too. What a wonderful gift. I wish I had a sister who would do that for me. This may be a really good option. [ more ]
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J-Pouch ForumsGeneral Discussion
? for those who went to Cleveland Clinic (Ohio)
A ActiveUC'er
vanessavy The cool thing about CC is they do a one port colectomy. Take the thing right out through the belly button! Watched a video of it the other day. Think they are the only ones doing it that way. [ more ]
ActiveUC'er I'm going to be having a colectomy...so at least I won't be fighting with them for the bathroom! . I will take the care and expertise of the CC over a single room any day. I got spoiled the last time I was hospitalized. They thought I had CDIFF so I was put into a room all by my lonesome! [ more ]
liz11 yes.. and the rooms are very small also. Its quite a tight fit when each roomate has a significant other sitting in a chair next to their hospital bed. But... can't really complain about it.. as the quality of care there, and the love of the nursing staff is unsurpassed. [ more ]
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J-Pouch ForumsK-Pouch Korner
questions about procedure
N NJK
vanessavy It should be removed especially since rectal cancer can still hit there. [ more ]
Former Member I still have a rectal stump left. I originally thought that I was going to have a "barbie butt", but when I came out of surgery, my doctor informed me that he did not remove the stump. He said in his opinion it would have done more harm than good to me (I had surgeries on that area when I was a baby and have scar tissue). I trusted his judgement and have had no issues with it being left intact. However, I believe most of the time it is removed, I am just an exception. Always have been! [ more ]
skn69 Barbie Butt for sure...they do not leave anything in because this is a 'no return' sort of surgery...but quite honestly I was thrilled to be rid of the source of all of my pain and anguish. Sharon [ more ]
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J-Pouch ForumsK-Pouch Korner
Had a CT Scan
vanessavyvanessavy
vanessavy I can only go 2 times a day to 3. Depending. Just how my pouch works right now. it's a pain in the butt [ more ]
skn69 Vanessa, With a kinked valve you should not be emptying only twice a day but relieving the pressure more often because it puts 'inside to outside' pressure on the valve and can cause a real problem getting the tube in. Next, you are absolutely right, the more you lift the worse it is going to get because it may be the muscles around your stoma that are aggravating your kink or worse a small, undetectable hernia that is worsening due to the weights so you should really lay off for a while or... [ more ]
vanessavy Yea I am over doctors lately, Nobody wants to claim the fluid as of now. Colorectal guy locally said it is GYN related, my GYN said with that much fluid and perfect ovaries it is not GYN related. I mean CC has done articles on this that people with UC and FAP build up fluid, thy have no explanation for it but they drain it. Either way I am not getting help locally so I will just wait and see what these people say at CC. I don't get damn doctors sometimes. Otherwise I am doing really good... [ more ]
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J-Pouch ForumsGeneral Discussion
flaxseed gelcaps
G Guest
Guest Since gel caps are made to dissolve my guess is you wouldn't have much of a problem with them. You're probably better off with the crushed flax seeds though if you can find them in gel caps. I consume my flax seed mixed with milk and oatmeal in the morning. It's one of the better foods I've used since my J Pouch was installed. [ more ]
Guest thank you what about the gelcaps digesting though? [ more ]
Guest thank you what about the gelcaps digesting though? [ more ]
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J-Pouch ForumsGeneral Discussion
My mom just died
skn69skn69
skn69 Thank you so much Bethie, I sincerly hope that your daughter does well and can finally go on with her life and live as she deserves and not as this horrible illness dictates...the loss of our freedom, of both body and mind is not fair and we often succum to frustation, depression and hopelessness...having a loving and supportive mother can make all of the difference. You sound like a wonderful mother and she is so fortunate to have you. My mother was forced into the role of nurse to me when... [ more ]
Bethie Sharon I read this thread and quite honestly as a mother of a daughter who just went through 3 years of absolute hell, it broke my heart that you did not have a mother who could help you with what you went through. It's clear from what you wrote about her that she had issues that ultimately had nothing to do with you and everything to do with her...you were merely the victim of her issues. I'm so sorry that you went through that. As a mother I can say it's the hardest thing I have ever been... [ more ]
JeffDC Sharon, I am very sorry about your mom. You have some strength and comfort being sent your way. Please remember that you did not fail. Jeff [ more ]
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J-Pouch ForumsHelp! Need advice now!
At the end of my rope - please give me some guidance!
FM Former Member
Kelsie My daughter sounds so similar. She was having terrible pain at the connection site, and then began having problems emptying. MRI appeared normal. Biopsies showed pouchitis but she only had one actual ulcer and otherwise her pouch looked great. The pain had become very debilitating and the only thing that would help is oxy. Their suggestion was pain rehab!! They couldn't find an obvious reason for her pain so tell her to just accept she has to live like this and learn to deal with it---NOT... [ more ]
liz11 regina- I want to suggest for you to somehow get a hold of Dr. Shen. You need to tell him exactly what you have told us here. Also, sometimes he has access through sales reps, etc... to get samples, freebies. He helped me get a a large volume of a prohibitively expensive prescription nutritional supplement by putting his sales rep in contact with me. Can you schedule another appointment with him, write down all of your issues and concerns, and go over them with them. Sometimes in initial... [ more ]
Reginabean How are you doing now? I hope you are doing better. I can relate with you. I have been going through something very similar. I have been going to the CC and Dr Shen said I have afferent limb syndrome at the top of my jpouch. I also have an ulcer and tissue buildup at the bottom of my pouch caused from straining. He prescribed me the lactulose and belladonna opium suppositories. It seems to help. I also have been married to the toilet and am completely exhausted. I try to go and only a tiny... [ more ]
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J-Pouch ForumsOstomy & Skin
Exercise tips
K ke353
ke353 I'll be seeing my surgeon next week, and usually the ostomy nurse stops in, so I'll be sure to ask! I just curious what has worked for others. Thanks Liz! [ more ]
liz11 ke.. can you go visit an ostomy nurse? You should be able to find a system/procedure that works consistently. There are so many different things to try that an ostomy nurse may come up with the best plan by seeing your situation. After you get that solved.. then yes of course swim, use the steam room, run, lift weights, do whatever the heck you want. I would suggest using either "sure seals" or coloplast brava elastic strips to help frame down the outside part of your wafer before swimming... [ more ]
Guest Use other things, when I had an ostomy for 3 months I didn't think about exercising with it. If you're having a ton of leaks now, you need to find a fix for that before you even think about exercising. You can still try getting away with bike rides, walking, etc. though. If you happen to live near a lake give that a try. I understand why you would want to stay away from pools. Every time I go running shirtless I 've thought many times, "how would I get away with this if I still had an ostomy?" [ more ]
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J-Pouch ForumsGeneral Discussion
Blueberries
N new2thisstuff
new2thisstuff Thanks everyone for the replies! [ more ]
SBS I'm with DJBHusky; they don't go through me as fast if they're cooked into something else. Like others, it doesn't stop me from eating them though. Sorry for the detail, but they often come out looking a lot like they went in. :-) Best Wishes, Steve [ more ]
CTBarrister The best thing you can do with a blueberry, and I mean the absolute best, is put them in pancakes. Then you have blueberry pancakes, which are the pancakes of Kings, and Queens. When I eat them raw they tend to act as a laxative, but when I have them as part of blueberry pancakes, they go down REAL SMOOTH. I think blueberries and pancakes just naturally go together, like cipro and flagyl, like Laurel and Hardy, and Abbott and Costello, and Simon and Garfunkel. They are just great duos that... [ more ]
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J-Pouch ForumsGeneral Discussion
Took me almost 2 years to sleep through the night
FM Former Member
JeffDC Nice, Mick. Sorry it took two years. It is a rare night for me to sleep through, but then on what may be a good jpouch night, the cats handle the rest. [ more ]
Spooky Same here. I don't think I slept an entire night until about the 2 year mark. Before that I always got up, usually only once, but I would be hard pressed to recall a night I slept through before that. When I finally did sleep through the night, it was a real milestone for me. That's not to say I sleep all nights now. I still get up to go once, but now only about a 1/3 of the time, compared to every night early after my takedown. But just being able to sleep 6,7, or even 8 hours straight now... [ more ]
fq wow that is so encouraging. thank u for posting it! i am 2 months out and wake up 2-3 times in the night. even if my last meal is at 6:30 pm. 2 years seems like forever right now, but i hope to be as successful as you! j-pouch : 2 months [ more ]
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J-Pouch ForumsGeneral Discussion
Pain and frequency?
FM Former Member
Former Member Thanks Colleen, I have actually started a diary of tracking input/output, and am noticing trends. Adjusting meds and meals accordingly. Actually slept good last night, hoping for another. Found some OTC products that help the butt burn good for me Balneol works good, Calmoseptine is good as well. I realize that it is still soon after let down, just gets discouraging sometimes. [ more ]
Colleen2001 Hi, Sorry you are feeling so poorly. Four weeks is really very early on. Try not to be discouraged. Have you started taking any Immodium/Lomotil to cut frequency? Are you still on pain meds? There are tons of foods that help to slow you down. Did your surgeon give you a list when you went home? A few are: oatmeal, applesauce, pasta, certain cereals, bananas (for some). Try to stay away from raw vegetables and too much fruit. Fiber wafers, or Metamucil will also help you to bulk up your... [ more ]
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J-Pouch ForumsGeneral Discussion
should i ask surgeon to move takedown date up a bit?
G Guest
CeeeeCeeee I waited a full year before having my takedown and never regretted it. It was my choice and my work schedule which helped me make that decision. I had absolutely no issues after takedown and I credit waiting all that time with my good fortune. Best wishes. [ more ]
Holly M Everyone is different, but I would personally have to agree with Subzeromambo and have takedown after the move. It has been 4 months for me since takedown and it hasn't always been easy. [ more ]
Subzeromambo I had my takedown date moved up to accommodate a vacation. I thought that eight weeks would be more than enough time for me to recover. I had been led to believe that after the eight weeks mark I would have the life I had before uc. Ha! I love my j-pouch but realistically it will be much longer, maybe four months?, before I expect to have a normal amount of energy and feel more confident about being away from easy access to bathrooms. Based on my experience, I would move first and then have... [ more ]
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J-Pouch ForumsGeneral Discussion
Android app for jpouch people
FM Former Member
Laurie49 Sounds terrific. The more knowledge the better. I wish you well! [ more ]
Guest Since I've gone through all these years without a app and learned what I learned, I have no interest in a app now. [ more ]
Guest Since I've gone through all these years without a app and learned what I learned, I have no interest in a app now. [ more ]
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J-Pouch ForumsGeneral Discussion
I hate this!
fqfq
Laurie49 fq...you are brand new to this whole jpouch thing. I know 2 months feels like an eternity, but honestly -- the healing process and adjustment to your new norm takes months (more for some, less for others). I remember getting very frustrated -- but, in the end -- for me, it has all been worth it. Good luck and keep coming here for advice. [ more ]
Laurie49 Simplex...Dog Day is a notorious troll (using many different names) on ALL j-pouch sites. In fact, he has been banned from just about all of them, but finds a way around it. He's had his pouch for over 20 years and the only problem was dehydration ONCE. Eventually, someone will trigger him innocently, he will go off and will get banned. It's just a matter of time. Just ignore his repetitive nonsense. It's like a broken record. [ more ]
Connie As noted in other threads, "Dog Day" is the ever-present black hole AKA Fred Bird. [ more ]
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J-Pouch ForumsK-Pouch Korner
I did it!!!
EricEric
Adroen Congratz! Ad [ more ]
Rosie128 Congrats Eric! Glad to hear that you are out there enjoying your life! Isn't it great? I wish you continued success!!! [ more ]
skn69 Congratulations Eric! next time use 2 pads and be very careful of speed bumps and potholes...your hinny is still delicate and unhealed on the inside. Sharon [ more ]
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J-Pouch ForumsK-Pouch Korner
Pouchitis?
Rosie128Rosie128
Rosie128 Thanks everyone! I am going to see the doctor today to see if I can get some answers. Thanks, Rosie [ more ]
vanessavy Bacteria Overgrowth is treated with antibiotics, it works wonders for me. night and day if I go off them. [ more ]
skn69 Rosie, If it is pouchitis they will probably have to put you on flagyl of another anti biotic like cipro but if it is bacterial overgrowth that won't really help a lot...try going onto a clear fluid diet, NO milk products at all, no sugars either and drink tons of fresh veggies juices, homemade broths and veggies soups and start taking probiotics immediately along with brewer's yeast and see if you start to improve in a couple of days.If you do then you can introduce grilled chicken breast... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Multiple abscesses... Argh!
FM Former Member
Former Member skn69, my pouch checks out according to all the tests they did on me when I first got an abscess; the doctor called the first abscess a "communication" between my pouch and the rest of the soft tissue. I think what I really have are multiple fistulas, some of which are ok and draining on their own, but there are two big ones that are the angriest, both on the right side, and they caused the open wound. They've drained without setons, it seems, but they hurt like hell. I haven't packed the... [ more ]
samantha1803 Are abscesses a symptom or not? This is really confusing! [ more ]
skn69 Knxvil, I had a couple of years of inguinal abscesses that kept developing and getting bigger and bigger at an alarming rate, never popping and always needing to be drained and long, interminable runs on antibiotics...one rather wise old family doctor finally looked at me when I walked into his office announcing that I had more abscesses and said...they will keep comimg back until we find out what is causing them...abscesses are a symptom and not a disease. So we cranked up the... [ more ]
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J-Pouch ForumsGeneral Discussion
Not liking this j pouch
R RLC
RLC Based on having had a colonoscopy w/NO meds and seeing the disease UC was the proper dx at that time. Now, not sure what is going on. I don't know if my body is just so beat up and depleted that this is something new (mouth sores and fever). Can't seem to get it together! I think I am taking a step forward and then POW another different symptom. I will be giving my surgeon a call today to update him. Ro, I am not really counting calories but I do go anywhere from 4 - 10 times a day and not... [ more ]
Ro hello...to answer your question, i go around 7-9 times a day, but thats also with only consuming less than 1000 calories, often averaging only 6 or 700....im losing weight, but its been relatively slow i guess. i left the hospital around 192 and im now around 175...and my takedown was 4/13 [ more ]
Guest Your post surgery symptoms are different from what I went through long ago. I can't remember experiencing canker sores then. My temperature was normal after the surgery too. There's always the chance you might have been misdiagnosed, from everything I've seen and heard, UC and CD can be tough to accurately diagnose at times. I'm 99% sure though that my UC diagnoses was correct. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Obstructions
G Grandonion
beucfree I just wanted to share with you my experience, not necessary is what you have. I had similar obstructions. Several episodes and ER visits over 8 months period. The final one didn't clear for days. This was while I was in Hospital. Finally, I ok’ed my surgeon to go in to see what is causing the blockage. It turned out that my old stoma site was narrowed. He cut that part out. It's been 3 months since the surgery and I am doing good so far (knock on the wood). Hopefully yours is not that... [ more ]
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J-Pouch ForumsGeneral Discussion
Northport, Washington UC outbreak
FM Former Member
Subzeromambo I was shocked at how many cookies were sent out by the Seattle Time's website. It is a good article but the number of cookies are worrisome. [ more ]
Ethumb I would love for them to find a definitive cause for this and they may be on to something but some of these articles just leave me wanting to grab my pitchfork and gather up my posse. I guess I would like to see the science before I start letting the pot stirring media sway the results. [ more ]
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J-Pouch ForumsGeneral Discussion
panicky feeling
G Guest
ActiveUC'er I second the counselor/psychiatrist recommendation. The psychiatrist is good for prescribing drugs, the counselor is good for talking through things. You may have PTSD or some kind of other anxiety disorder. It's not like you are having to deal with "normal" things in your day to day life (aka surgery and whatever lead up to surgery)! I had generalized anxiety (or possibly PTSD) before I started suffering from UC. Celexa was a great help before UC and continues to be a great help while I'm... [ more ]
skn69 You are probably right...dehydration can manifest itself in many different forms from headaches to nausea to cold sweats and cramps stait to anxiety and dizziness so if you are in hot Fla and not drinking enough fluids (and us pouchers need tons more fluids than normal people do) then I would agree that it may very well be part of the problem (or maybe all of it)...drink smart and use those sports drinks that help you to keep your electrolytes up and try eating salty nuts and potatoes to... [ more ]
Guest ive been avoiding drinking too many fluids as i kept reading you have to be thick and shouldnt drink without eating something first. if i follow that id never stop eating to get enough fluids. today i threw caution at that idea and drank when i wanted and i swear to you that crap feeling is dissipating. i am starting to think ive been dehydrated all this time. i hope im right. [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch veterans: do you remember your 6 week mark?
fqfq
NewShinyCD -Hmm I think I was going about 8-12 times a day. -I woke up at night and still do. It isn't bad, maybe 2-3 times but I'm in and out in less than 5 minutes (unless I take my phone with me and I end up sitting there playing sudoku or something). -I ate pretty much what I wanted. In fact I ate Sonnys BBQ 2 weeks after getting out of the hospital. -The first 3 weeks, yes butt burn was awful. Then it just went away. -I had cramps that felt like I needed to go but if I stopped and waited they... [ more ]
Guest That's incredible, I wish I ever had it that good and I'm 20 plus years now [ more ]
Guest That's incredible, I wish I ever had it that good and I'm 20 plus years now [ more ]
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J-Pouch ForumsGeneral Discussion
Post Pouchitis/Flagyl Question
TinCanTinCan
Karbear I experience fatigue for about a week after stopping Flagyl. All side side effects you listed are the reason why I no longer take Flagyl for pouchitis (combined with the fact that it doesn't help me at all unless combined with Cipro). If things don't improve in a couple of weeks, maybe you should schedule another appointment with your GI. Until then, rest up! [ more ]
TinCan Thank you LionsPride - sounds like good advice to me. It was indeed a prolonged period before I received treatment. kjeane - this is my first experience with pouchitis so I don't know if there is a connection to my diet. I do know that it occurred when I stopped taking probiotics (not because I wanted to, but because I ran out and it took me a couple of weeks to get more). I'm hoping it doesn't become a chronic thing. I can't imagine what it must be like to live with this all the time. In... [ more ]
jeane Pouchitis always does this to me and unfortunately I have ot chronically so if I miss my augmentin for a few days or a few doses in beween I feel like I have been hit by a truck, total body aches, fatigue, insomnia from interrupted sleep, butt brun and just a plain lousy feeling of malaise. I agree that you need to up your fluid intake and rest when needed and try and stick to natural foods at this time. I still am amazed at folks who get pouchitis on occasion versus some of us who have it... [ more ]
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