J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsHelp! Need advice now!
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 ]
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 ]
wine works too. [ more ]
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J-Pouch ForumsGeneral Discussion
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 ]
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 ]
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 ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
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 ]
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 ]
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
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 ]
ohhh ya, baths are great especially in the first few months when its hard to get relief! [ more ]
Sitz-Bath with very warm, almost hot water. Or a hot bath! Works wonders. [ more ]
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J-Pouch ForumsK-Pouch Korner
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 ]
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 ]
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 ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Don't know the %, but I had takedown in 1992 and J Pouch surgical revisions in 1998 and 2000 due to a septum that developed in the pouch, and then recurred. These surgeries were relatively noninvasive as they went through my rectum to perform the necessary cutting, snipping and stitching. No surgeries since 2000. [ more ]
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J-Pouch ForumsK-Pouch Korner
I have found tobacco pouches to be the best. [ more ]
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 ]
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 ForumsHelp! Need advice now!
J-Pouch ForumsK-Pouch Korner
I second Sharon's diet -- perfect for me. I need to avoid melons and celery (not for gas for obstruction) [ more ]
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 ]
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
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 ]
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 ]
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
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
Why does your doctor not recommend having kids? I guess I am not understanding that part? [ more ]
Another vote for surrogate. Seriously, it's still your baby. [ more ]
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 ForumsWomen's Health & Pregnancy
J-Pouch ForumsGeneral Discussion
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 ]
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 ]
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
It should be removed especially since rectal cancer can still hit there. [ more ]
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 ]
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
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 ]
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 ]
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
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 ]
thank you what about the gelcaps digesting though? [ more ]
thank you what about the gelcaps digesting though? [ more ]
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J-Pouch ForumsGeneral Discussion
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 ]
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 ]
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!
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 ]
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 ]
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
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 ]
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 ]
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 ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
Thanks everyone for the replies! [ more ]
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 ]
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
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 ]
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 ]
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
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 ]
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
J-Pouch ForumsGeneral Discussion
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 ]
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 ]
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
Hi NJK, I have used a barrier cream called Siopel (UK) which helps a lot for me. I first was given it when I had my temp ileo and was sore around the stoma but have found it is a great relief for burning pains now. Dave [ more ]
When I get a case of butt burn, I use Calmoseptine ointment and I find it helps tremendously. [ more ]
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J-Pouch ForumsGeneral Discussion
Sounds terrific. The more knowledge the better. I wish you well! [ more ]
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 ]
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
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 ]
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 ]
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
Congratz! Ad [ more ]
Congrats Eric! Glad to hear that you are out there enjoying your life! Isn't it great? I wish you continued success!!! [ more ]
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
Thanks everyone! I am going to see the doctor today to see if I can get some answers. Thanks, Rosie [ more ]
Bacteria Overgrowth is treated with antibiotics, it works wonders for me. night and day if I go off them. [ more ]
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!
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 ]
Are abscesses a symptom or not? This is really confusing! [ more ]
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
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 ]
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 ]
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 ForumsGeneral Discussion
J-Pouch ForumsHelp! Need advice now!
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
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 ]
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
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 ]
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 ]
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
-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 ]
That's incredible, I wish I ever had it that good and I'm 20 plus years now [ more ]
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
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 ]
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 ]
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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J-Pouch ForumsHelp! Need advice now!
Thank you, that makes me feel better because yesterday I broke down and went to Steak N Shake. Logic tells me it won't matter since my J Pouch hasn't had any waste go through it yet. Now I'm sitting in the waiting room ready to get this enema over with. Thanks! [ more ]
I had this done last month and I had no prep or instruction for clears at all. All the imaging came out great if that helps at all. [ more ]
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J-Pouch ForumsGeneral Discussion
Colleges and Universities do a pretty good job of getting this information out to students. Chances are your daughter had information about the OSD on her campus but either forgot, or didn't take the time to read the information on all the services available to students. It's really not your doctor's job to point your daughter in the direction of help, outside of his/her purview. I work with college age children and am often amazed at how uninformed they are as compared to the independence... [ more ]
FYI - I just contacted the school and I can't believe we did not do this last year!! My daughter would have had less worries had that happened - that being said it seems to be a relatively easy process. I wish doctors who have college students were more aware of this and could encourage their patients to take advantage of it. I know we will be giving her gastro the information to help his other patients with this. Thanks to all for the information - her school has an online form that gets... [ more ]
I'd also like to add that my daughter and I are very open about her condition. We personally feel that if instructors know exactly what she is going through they tend to be more accommodating and go above and beyond what is legally required of them. We also realize this is a very personal decision and your privacy is your right. That being said, she has NEVER come across anyone who has ridiculed her or treated her poorly in any way because they knew her health conditions. We feel it is to... [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks JJA, but as I've already tried to thicken bms on numerous occasions with no result I don't think I'd try to go that route of implanting the device, I'm probably being a coward, but the thought of all that pain, still not completely resolved has put me off anymore procedures,at least for now, also I'm pretty sure more of the previous implants are trying to eject from the muscle as the pain and bleeding has been quite intense. Thanks for your input, I suspected bms had to be quite firm... [ more ]
I got an implant last spring also. It will not help for liquid stool. You need at minimum a soft stool for it to make a difference-our objective was to thicken stool as much as possible with copious amounts of metamucil, immodium, codeine (I used to take paragoric liquid, but became taste aersie to it), oatmeal for breakfast, etc (I take 9 capsules of metamuscil, 2 immodium, and 1 30mg codeine, 3-4 times daily, usually before meals). I went from 2-3 major accidents/day to 1 minor accident... [ more ]
I was taking a similar product, it was in a glass bottle, but had to take nearly the whole thing before it made any difference, then it only lasted a little while, tasted revolting too!! Back to the specialist, more cost, get nowhere!! I just really can't take another trial after all the pain I've had since Jan 09, as all the implants broke up in the anal sphincter, some rejected, broke thru the bowel wall causing an erosion and rectal pockets to form, some were removed, some have migrated... [ more ]
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J-Pouch ForumsGeneral Discussion
You sound great! Congratulations you made it back to normal! [ more ]
Congrats on your good success!! [ more ]
Thank you for the update. It is helpful to hear success stories and see your full experience! I'm sure many of us are like me, recovering from the take down and dealing with frequent bathroom trips and it's good to know that everything gets better with time. [ more ]
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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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