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J-Pouch ForumsPouchitis
Treatment
BB Burning Brian
ks1905 have you been able to lower your dosage? I am on Flagyl (which is working for me) and I started at 550 mgs twice a day and now I am down to 325 mgs once a day. And if all goes well to taper to zero but it's been a slow process. [ more ]
TE Marie I'm wondering why your doctor hasn't had you try a different antibiotic because you are still having symptoms after taking it for so long. I can't take Cipro because I got a c.diff infection from it years before my j-pouch surgeries. I'm telling you this because unlike Scott I can't take Cipro. I have chronic pouchitis now and rotate between flagyl and augmentin. Cipro isn't the only antibiotic used. [ more ]
Scott F I've been on Cipro for several years, with just a few pauses. Others prefer an antiobiotic rotation, if they have to stay on antibiotics to maintain good function. It's useful to have additional choices that work for you, but I wouldn't panic based on one bad day. I've tried a few times to stop the antibiotics, but it just doesn't work for me, and I refuse to live that way (with uncontrolled pouchitis) as long as I have an alternative. [ more ]
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J-Pouch ForumsGeneral Discussion
question regarding contacting Dr.
N nbm
Jaypea Pick up the phone and speak to his assistant. That person will probably be able to steer you in the right direction immediately. [ more ]
Jan Dollar I agree 100%. I prefer emails too. No worry about the message getting "lost in translation," or screwing around with phone tag. But, that only applies when there is an ongoing relationship. I would not expect a doctor to even remember who I was after 10 years. But, no harm in putting it out there. Jan [ more ]
nbm Thanks Jan. I will figure something out. I personally prefer emails to phone calls--they seem so much more efficient and less time consuming for both people involved when the question is simple but I understand that it is different in the medical community. [ more ]
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J-Pouch ForumsGeneral Discussion
VSL#3 DS - taste
C clouwho2
Jeff D I just started taking VSL DS last month. I tried it once with water and hated the taste. I now mix it with cinnamon applesauce and that works really well for me. [ more ]
Lesandiego I couldn't stand the taste either, so my doctor said to take any probiotic (regardless of research studies on VSL). I have taken Align (in capsule form) for almost 2 years with only one episode of pouchitis (which was probably related to my taking Advil at the time anyway). [ more ]
clouwho2 ❤️
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J-Pouch ForumsGeneral Discussion
bidet
S scallop
dgtracy wow, everyone has those expensive coco and totos... i have a 65.00 Neo 320 that i bought off of amazon, has cold and hot water. you just plumb the cold water line like you do all bidets then it supplies the materials needed to run another smaller line to the hot water off your sink. depending on the location of your toilet and sink it may not work if they are say across from each other, but my toilet is 3 feet to the left of my sink and the line is hidden nicely behind cabinet. [ more ]
betsaronie I also second the CoCo. I bought one that was $295, been using it for 3.5 years now. It's kinda hard to clean under it without removing the whole thing, but i've gotten used to that. I have the heated seat model which is lovely in the winter. I've used a cheaper one, that was just an additive to the back of the toliet seat, no heated water, but it was still heaven when I was on vacation and away from my CoCo. It was either a Luxe or an Astor. both of which are on amazon for $30-$50. [ more ]
CeeeeCeeee My Toto Washlet is about 12 years old and going strong. However, I am the only one that uses it and I'm very careful not to abuse it! It is worth every penny I spent on it! [ more ]
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J-Pouch ForumsGeneral Discussion
Setons, recovery, and more testing, yay...
betsaroniebetsaronie
TE Marie The booklet my surgeon gave me before my surgeries said cuffitis affected only 4% (or some other ridiculous percentage). My dad survived a surgery that his surgeon said only 10% survive. My husband wanted to rely on a 25% prostate cancer risk to not have the biopsy that lead to his diagnosis performed. I convinced him that playing the percentages isn't something reliable to do when your health is concerned. He had prostate cancer and it required it's removal or radiation. Radiation could... [ more ]
Scott F For what it's worth, you can't really know that his lymphoma was caused by the biologic, though I don't blame you for the suspicion. I have a good friend who developed lymphoma at 25. Sometimes it's just bad luck. [ more ]
betsaronie Thank you ladies. I really appreciate it. I think i was on the super emotional train and just needed to hear that it can work out. I have been wanting to see a therapist, lots of guilt and health and body issues and my poor boyfriend can't keep up with me draining all of it on him. I'm lucky to have a great support team in my friends, family and my boyfriend. His brother has Crohn's so he has a unique understanding that most "normal" people don't have. Having said that, part of the reason... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hard lump (abscess?)
J j-poucher
j-poucher Thank you. Hopefully I can get some answers this week. I appreciate the feedback very much. [ more ]
Jan Dollar Could be, but it sounds like it is describing pouchitis, as mural thickening is the bowel wall. You should not feel it in your perineum. What you describe sounds different than what was seen in the prior CT. Jan [ more ]
j-poucher Thanks Jan, no fever but that is about the only symptom I have not experienced lately. I had a CT scan last month and I cut and pasted the Radiologist's comment below.... "A focal area of mural thickening and enhancement is demonstrated in the right lower quadrant, proximal to the remaining colon/tortuous pouch. Extensive postoperative change is seen. Findings are suggestive of a focal region of inflammation" . Does this make sense to you? If so, is this "inflammation" he refers to what I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Extreme anal pain/chronic fatigue/need new dr.
ChrIssy25ChrIssy25
lablover What a idiot your husband is. I am the 'well' one in our marriage. I wouldn't have thought of leaving my husband even at the worst times. 'Sickness and in Health.' I am sorry about what you are going through. Cyber hugs. Hang in there.. [ more ]
Jeffsmom I need to say that I'm crying with everyone as well. Chrissy, you are a remarkable women. you have been through so much, in fact, everyone of the people on this have been through way more than any deserves. I am amazed at the strength and determination each one of you have. All of you are so brave and far stronger than you realize. Chrissy, things will get better. You have to believe that. Your husband has to be a complete selfish ....... I strongly believe in Karma. When you are feeling a... [ more ]
Haidalyn I just had my surgery a month ago and am having some struggles of my own but I just wanted to respond because your story made me cry. You sound like a very brave and strong person and I can't believe how much you have survived. I hope you find love, comfort and support in your coming days. Your husband clearly didn't deserve you. Sending a big hug. [ more ]
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J-Pouch ForumsHelp! Need advice now!
need surgeon
MS michael s
BillV Michael, I encourage you to get additional information and contacts through his website. Susan Kay, his program coordinator, can address some of your concerns and send you a contact list of about 300 people who have BCIR’s, including those have had valve revisions to a k-pouch. I have had 4 major surgeries to date and would go in for another if needed to correct a problem with my pouch. Quality of life is very important to me. [ more ]
michael s Thanks I would like to keep the pouch but after two failed revisions and bad experiance I do not know if I want to try it again,wish I had met Dr Renhke earlier [ more ]
BillV I can’t offer suggestions for surgeons in your area since I live in northern Wisconsin, but one question you should consider is whether you would prefer to have an ileostomy with a bag or to continue with a continent ileostomy like you have had for many years. I was 68 when I had my BCIR done by Dr. Ernest Rehnke in St. Petersburg, FL and am very satisfied with the care I received and the results of the surgery. Dr. Rehnke performs valve revisions on leaking k-pouches and BCIR’s and his... [ more ]
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J-Pouch ForumsGeneral Discussion
first meal
U UjohnjC
Annikki I would avoid the OJ. Oranges cause me severe butt burn. [ more ]
Virdent A word of caution on the orange juice, some people experience extra butt burn with acidic things like some juices and tomatoes..but hey I guess you can try everything for your self but I'd hold off on it for now. =P [ more ]
CeeeeCeeee I agree with Marianne! Keep it rather simple. If a particular food doesn't work for you at this stage, stop eating it for awhile but try it again in a few weeks. At first, for me, orange juice, was problematic. Later on.....no problem! Best wishes! [ more ]
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J-Pouch ForumsGeneral Discussion
Dilation
Deanna6Deanna6
JeffDC The symptoms I had when I knew the stricture had appeared were multiple, back to back bathroom trips with very little output. The only way I could get decent output was with a good bit of straining and twisting on the throne. I have had two dilations, I think, and a stricturoplasty. The doc recommended I purchase a dialator, and gave me the diameter so I could order the right one. I have it, but have not used it in several years. The first several weeks after the dilation were wonderful. But... [ more ]
rachelraven Sometimes things get better, a few times they got way worse (nicked up some inflammation, and steroids put it right). This time, kinda about the same, but wasn't having much issue prior, even though the doc thought it necessary to do. [ more ]
mgmt10 I had a stricture develop shortly after my takedown surgery. I had to have it dilated a total of 5 times before the scar tissue stopped forming and it stayed open. My surgeon had me come in once a month and just did it digitally in his office. [ more ]
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J-Pouch ForumsGeneral Discussion
takedown tomorrow
U UjohnjC
Jeffsmom Marybeth, I feel your,pain! My son listens to nothing I say regarding food! she will,figure out soon enough that stuff is going to make her sick. Something my son is FINALLY understanding, lots of tiny meals. Eat something every 3-4 hours. Before my son lost is large intestine, he was almost 300 lbs., about 100 over weight. The doctors even made him lose weight before they would do his surgery. Long story short, while he had is ostomy and even after his take down in Sept. Would eat in huge... [ more ]
UjohnjC I'm starting on full liquids today little nervous waiting on oatmeal and yogurt and cup of coffee doubt i eat it all I'm hoping it all goes well i get to go home tomorrow miss my girls they won't come up cause last time my 14 year old got c diff then she was in another hospital not fun for my wife or anyone i have 2 friends w pouchs and they say they can not eat french fries sweet potato fries they can though all trial by error though good luck [ more ]
mary beth Im sorry to hear you had a little set back but glad you´re feeling better now. Lily is doing better today. She was in a lot of pain yesterday and she was ¨starving¨ so the surgeon actually let her start food last night which I was skeptical about since it had been less than 48 hours. And instead of eating something bland as I suggested, she insisted on mac and cheese and then snuck some of her sisters french fries. I can´t follow her around forever so I feel she´s gotta learn on her own what... [ more ]
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J-Pouch ForumsGeneral Discussion
Who would be more likely to survive on an island?
F fightUC2
TE Marie J-pouch, even if stranded with nothing. Lots of good in coconuts and I think I'd be able to stay hydrated. [ more ]
skn69 Give me a tube and enough lube (or coconut oil and a straw) and my k pouch would win hands down...not that I am planning to try it anytime soon...By the way, you didn't mention if it was a nice, warm tropical island or a cold northern island...I prefer the warm and sunny kind given half a choice. I understand where you are coming from...the fear and terror will get to you pre-op...mind games (or mental gymnastics) are very helpful in allaying the fears... good luck Sharon ps...you didn't... [ more ]
Jaypea If there were supplies to start an IV (jelco and tubing) you can use coconut water instead of saline. It is sterile and can be infused directly into a vein. i do prefer my coconut water with a little whipped cream and rum but hey, in a pinch, the plain stuff will do. [ more ]
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J-Pouch ForumsGeneral Discussion
Interesting Article on Microbes/Probiotics
ATXGuyATXGuy
Scott F ❤️
Jan Dollar Very interesting. For me, the most important take-away is the fact that many probiotic makers really do not truthfully advertise what their product can do. The evidence is weak, but they make a big deal of it. The second thing noted that I appreciated was the fact that nobody really knows which probiotics are useful for any particular person. This is why there are no simple answers, and why things change every time you take antibiotics. The article does a great job showing what a huge task... [ more ]
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J-Pouch ForumsGeneral Discussion
Medication question
JeffsmomJeffsmom
Jan Dollar Dr. Remzi is pretty much top dog in regard to pouch salvage. He would also be the top doc for dtermining whether there is enough small bowell for a redo. It only takes 6-12 inches, and the normal length of small bowel is 15-20 feet, more than enough for 2-3 j-pouches. But, there are individual variances, and if he had some small bowelresection the first time, that would make a difference. The more you can get Dr. Remzi's consulting opinion, the better. Jan [ more ]
Jeffsmom Thanks everyone for your input. Very helpful. This is a surgical complication. There is a micro tear that caused the abscess/fistula. The problem is, no one can find it. And no one seems to know how to fix it. in the call yesterday between my surgeon and Dr. Remzi, it was discussed and some ideas were tossed around but they may not be viable in my son's situation. He does not have enough small intestine to just make a new pouch. Also, to try and plug up the tear, they have to do it from the... [ more ]
Jan Dollar Prednisone, biologics and the like will not heal fistulas that are simply a result of surgical complication. Only if they are due to IBD, will these drugs help. Prednisone is sort of a dangerous proposition when infection is involved. The trick is knowing if this is IBD related. But, if the leak is at the suture line, it is most likely a complication, not IBD caused. I am not trying to dash hopes of other treatments. You should ask about them. But, I did not want you to have false hopes in... [ more ]
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J-Pouch ForumsHelp! Need advice now!
pain 1 day out
U UjohnjC
rachelraven CeeeeCeeee, when I'm backed up, a warm Sitz bath does the same thing: relaxes things, then, blammo! Out it comes. [ more ]
CeeeeCeeee You might try various positions to place your J-pouch higher than your stomach. Getting down on all fours with your buttocks elevated may help the gas rise and exit. Another position/activity which has helped me is to sit on the toilet and cough hard several times. The gas comes exploding out of me! I've also stood in the shower and held the shower wand in my hand while letting the hot/warm water spray shoot straight up "you know where". This has seemed to relax the sphincters so that the... [ more ]
Jaypea Gas pain post-op is the worst. Try to get up and move around as much as possible. The threat of the dreaded NG tube my scare your bowel into moving some of that gas out. [ more ]
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J-Pouch ForumsGeneral Discussion
How do we PM?
LambiepieLambiepie
Lambiepie Got it. Thanks! [ more ]
Scott F There's a rectangular "Dialogs" button near the top, right corner of the screen. Clcking that will show you all of your dialogs. [ more ]
Lambiepie Thanks, Scott. Can you tell me how to view the current conversation? I PMed someone but don't know how to view her response. When I clicked on her name, then "start dialog," it would only allow me to post a new PM. I am computer illiterate anyway - this is confusing to me! [ more ]
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J-Pouch ForumsGeneral Discussion
Flare up after surgery?
DB Dr. B
Spooky You could have cuffitis as well (or pouchits and cuffitis as they can occur at the same time), which would be a more likely explanation for bleeding. You can still have UC flares after surgery. These are usually in the form of cuffitis, which is literally UC in the area of the rectal cuff that is retained after surgery. The likelihood of developing cuffitis may depend on the amount of cuff that is retained or the severity of your UC prior to surgery. But even though the affected area is... [ more ]
Scott F If the Cipro is just a year or so old and hasn't been in extreme temperature or humidity is should be completely fine. [ more ]
Dr. B Thanks Marianne. I plan to call Dr in morning. Anyone know if you can take cipro that is right at 1 year old? [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
pouch response to IVF stimulation?
E elliepouch
LoveLife Hi all, what about pains after taking out the eggs? Some 'normal' people describe horrible pains weeks after. Did you feel any? [ more ]
Lovin Life I just went through my first (Failed) round of IVF in Dec. I did not experience any issues with my pouch related to stims. I did suffer from constipation from the pain medicine, but other than that all else was fine. I am going in next week to get Essure, because it is very likely that my IVF failed due to the fluid in my tubes. If you have any questions feel free to ask. [ more ]
Ksande I did IVF in the fall of 2012 (and now have a 1.5 year old!) and I had more gas and general discomfort from the hormones rather than the actual retrieval and transfer. Best of luck! [ more ]
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J-Pouch ForumsGeneral Discussion
new to the jpouch
J joey_rock
Gentle Now Wow Strange! You are already down to 4-6 per day? That's wonderful! I had my takedown around the same time as you (I remember because I had to pack my wound for the first two weeks and was intrigued that you didn't). I'm still at 12-15 day. Are you taking any meds or do you have any other suggestions to share? [ more ]
rachelraven I lost weight pre-surgery, and immediately post-op (I'm barely 5'2", and left the hospital around 88lbs). But I gained weight fast with my loop ileostomy. I was back up to about 100lbs at takedown. By my mid-20s I was probably 110lbs, on average. Thirties, around 120... Now, in my "older" years (40s), I have the opposite issue! lol I'm the highest I've ever been, non-pregnant, at 133lbs. I do know some con't to battle low weights, but I'm pretty sure most don't eventually at some point after... [ more ]
Hoping I had my takedown surgery in 2014. I was in the hospital 4 days and as soon as I got home went back with a raging UTI. I guess that happens to many of us. It has almost been a year and I am still learning. I have found that potatoes, bananas, rice and yogurt are my friends. It is different for each person. On good days I have 6-8 bm's sometimes less sometimes more. I lost 30 pounds after surgery. Food just did not sound good or interest me at all. I am just now starting to have a better... [ more ]
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J-Pouch ForumsOstomy & Skin
pain and skin 6 days after surgery
K kariA
kariA Hi guys, Thank you for your replies. You are right, I need patience and have time pass. Fight like a girl, am able to drink oj. But had some Gummi es today and stomach ache... you never know. thumprhare, not having discharge just some pressure and discomfort, like having to go to the restroom. Was told it's normal. Hopefully. .. having new problem and will post it in a bit. [ more ]
thumprhare I had mine Feb 18th!! I have the same complaint of skin pain around the ostomy site. I feel like my skin is very clearly red and irritated although not bleeding yet. I have not ostomy nurse other than one 1 1/2 hours away. :-( You are lucky you have someone to come by. My ostomy nurse wanted me to use the powder and spray when it was irritated. I will follow because I need all the help I can get. Oh, are you having discharge from the bum? I was told expect some mucous but what I am getting... [ more ]
Fight like a girl Hello...it's been 25 years since my surgery but I do remember what you are talking about. I noticed you said you are drinking O.J. with water, everyone is different, but I could not drink O.J. at all even know I can't. Take care. But definetly keep hydrated. Patti [ more ]
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J-Pouch ForumsGeneral Discussion
Remicade
H Hoping
Hoping Thanks for the information everyone. It makes me feel better to know that you have not had any major problems with Remicade. Ready to give it a try. [ more ]
Andy1993 I am currently on ramicade. It is an expensive drug but if it works it works! I am a nursing student and been in the ER and a nursing home and I didn't get sick once even though I was exposed to ill patients. There is also a pneumonia vaccine you can get I believe it is every three years and your annual flu shot. It does make you more susceptible to any infection, but you gotta see if that out ways the benefit the drug does for you. [ more ]
mgmt10 I was on Remicade for a while when I had uc. I never had any ill effects from it. Never got sick the whole time I was on it. It stopped working and that's when I stopped it and had surgery. My mom has been on Remicade for 10 years now to treat her RA and it's been a God send for her. She's not had any issues at all. She started it when she was 73 and now she's 83 and her bloodwork is always perfect. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need help with fistulas/narrowing/scar tissue. J pouch done in 1983
CO Char. O.
Jeffsmom Find a new doctor, fast. Do not let anyone touch you who has no experience, even if you have to go out of state. You can google gastro surgeons who do what you need. USNews and World Report magazine has a whole thing on gastro people and where you can go. Also, how far in Mayo or Cleveland. If you have to travel, might as well go to the best! [ more ]
Char. O. thank you for saying there is some hope. I need a Dr. that understands this. They are few and far between. [ more ]
rachelraven I will say my GI who has experience with J pouch patients and only focuses on IBD patients has said that patients with "old" pouches are coming to him with new IBD symptoms, strictures, fistulas, refractory pouchitis, etc after years of, maybe, having little or no issues. His saying that to me was HUGE, because I felt like I was slowly going crazy. Like, why after 20ish years was I feeling bad? Why did I develop a fistula? Etc. It was definitely validating. My surgeon still works with this... [ more ]
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J-Pouch ForumsOstomy & Skin
Did I just have a blockage??
LambiepieLambiepie
chiromancer The barrier strips by Coloplast are two half circles maybe one inch wide and you place them over the edge of the pouch that is on the skin so that they are attached to the pouch flange and also onto the skin. They over lap each other. They both hold the pouch on securely (no need for belts) and can help keep any leaks from getting out. Nothing is perfect but since using them I really dont think about leaks or always having a "change" with me. Its been several years since I began using them... [ more ]
Lambiepie Chiromancer, can u tell me how you use barrier strips? [ more ]
chiromancer Sorry for your experience. Hard to say if it was a blockage. If the out put after the initial eruption was mostly liquid I would say yes. There seems to be flushing after a blockage and it can last from a few hours to a few days. With me it also tends to have a particular smell. If your not using them I would really recommend you add barrier strips to your pouch set up. I use Coloplast Brava barrier strips and they both help in securing the pouch and in retaining any leakage. [ more ]
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J-Pouch ForumsGeneral Discussion
out of surgery
U UjohnjC
UjohnjC up early hard to sleep in hospital had small bm last night water with few farts stomach still in pain walking around hospital a lot go on liquid diet today to start not sure if i can eat later peace all [ more ]
mgmt10 Try to walk around as much as you can. The nurses will start bugging you to get up and walk and it's really good to do so. It helps wake up the bowels. Hope you're feeling ok! [ more ]
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J-Pouch ForumsHelp! Need advice now!
incontinence
M MaryL
MaryL Thanks Scott for all of your help - will call his doctor in the a.m. [ more ]
Scott F C diff can vary in symptoms, but troublesome diarrhea is most common. If I had his symptoms, I'd discuss the possibility with my doctor, at least to get tested to rule it out. [ more ]
MaryL What are the symptoms of cdiff? He has no fever, appetite is fine just this constant urgency and accidents [ more ]
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J-Pouch ForumsGeneral Discussion
Cholestyramine and cuffitis
M Madi78
TE Marie My local GI said he'd rather I not use it because it binds things so much it might hinder the medications I take such as for my thyroid and antidepressants. I have chronic cuffitis and thought it would help it by neutralizing some of the acidity flowing through. I don't like your doctor's attitude! You are the one experiencing the reaction not your doctor. If you are not benefiting from using it then stop using it. I haven't seen much discussion about it's use in this support group therefore... [ more ]
Jan Dollar One way to find out for sure is to stop it for a few days and see if the symptoms resolve. I suppose an inactive ingredient could be causing irritation. Maybe a different brand or formulation would work better, like Cholestid pills. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Imodium Timing Question
ATXGuyATXGuy
Catinthehat Interesting. Imodium has little effect on me. Certainly not that much. I often take 2 before meals and never have a problem with it slowing too much. For me, even 1/2 a beer will cancel out the imodium effect. [ more ]
ATXGuy I drink quite a lot of water and, these days, very little alcohol. While I quite enjoy alcoholic beverages, since my takedown I haven't really felt like drinking much, so I've decided to listen to my body on that count. For reference, at the rehearsal, I consumed two margaritas, with four 12 oz glasses of ice water, with regular water during the day beforehand. At the wedding, I consumed three drinks (one beer, two mixed drinks) and six glasses of water, from 12-16 oz depending on the... [ more ]
Scott F Is it possible that you're drinking less water (and/or more alcohol) at these times? In any case, if you add more water to the mix you might get a better result. [ more ]
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J-Pouch ForumsGeneral Discussion
Meta-mucil
G GraceB
Jan Dollar Unfortunately, the best advice is regarding the fact that there is no perfect diet or "best" medication/supplement to have optimum function. One reason is that results vary individually. Another reason is that we each have our own priorities in regard to what is essential, important, nice-but-not-necessary, and unimportant. There are intolerances and dislikes That factor in. This is why trial and error is a big player, and what you think makes sense may not work at all, or even make things... [ more ]
GraceB Thanks Jan you and Scott and a lot of others always have good advice which I love. It just so wonderful that when a question goes out there are so many that are able to answer and help one another. Thanks again Grace [ more ]
Jan Dollar I don't have a lot of answers. For myself, I preferred to take the maximum amount of Imodium and not limit my diet in a big way. Right from the get-go I ate all sorts of vegetables, just limiting the amount in each meal. One thing I can say is that Imodium and lomotil will likely work best when you take it on a regular basis, rather than just occasionally. That way, there is some in your system all the time, instead of big peaks and valleys of blood levels. It takes a long time for your gut... [ more ]
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J-Pouch ForumsGeneral Discussion
Better after Take Down
MB mary beth
mgmt10 She will feel better after takedown. It may take a little while while she heals but things will improve. I had a very tough recovery after my first step surgery. Basically for those four months I felt like I got hit by a bus. I couldn't gain weight and my ileostomy ran like a faucet. That takes a lot out of a person. Once I had my reversal, things greatly improved. The weight came back on (and then some!) and I had much more energy. Oh, and the mucus is totally normal (even with some blood)... [ more ]
rachelraven The output from my disconnected J pouch was not crystal clear, and at first would be tinged with pink. It settled into the light tan mucusy color that is indicative of normal bowel mucus. It never had an odor. I was 19 when I had my surgeries, but I never had stomach pains, and was ravenous after, and gained back my weight pretty easily. Never needed Immodium or Metamucil. I have a suspicion some people have longer small bowels allowing for more absorption. However, I never had stomach pains... [ more ]
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J-Pouch ForumsGeneral Discussion
Advil
JD Jeff D
mgmt10 I have no problems taking NSAIDs with my j pouch. I don't take them daily but Advil is usually my go to pain reliever. No issues what so ever. Just like anything else....everyone is different. [ more ]
Spooky tulsamom, I think it's like anything else - we all have different tolerances. Some of us may be more sensitive to the affects of NSAIDs than others. Also, I would imagine if you have taken high doses in the past, you might also be more sensitive. As for me, I seem to be able to tolerate NSAIDs, but then again I have never taken high doses nor been on them for an extended period of time. Currently I may take no more than 4 to 6 tablets per month of Advil, if even at all. I typically use Advil... [ more ]
tulsamom I am surprised to hear so many people have taken NSAIDS without problems. I'm also extremely glad for them that they didn't have the effects I did when took them. The very few times I risked it back in the early 2000s I had a bad pouch reaction. So I stay away from them like I would from a mediation that I am allergic of. I've been able to get a narcotic RX for the few times I was in severe pain, like from dental work, because of my reaction to NSAIDS. Otherwise I use heating pads and ice... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
How many months of trying?
ICCICC
Ljclifford816 It took us 10 months to conceive naturally. Based on OB's advice, around 6 months of trying with no luck my husband was tested and I had an HGN test to make sure my tubes weren't blocked from scar tissue. Knowing that everything was working and it would hopefully be possible to naturally conceive allowed me to stress a little less about it. I would recommend having an HGN done if doc will do one- good to have the power of information. [ more ]
ICC Thanks ladies. We have only been trying for 4 months, but I don't want to wait too long to get checked out. [ more ]
Kate1026 Also, I know this isn't exactly what you were asking, but to my knowledge it's standard to have a full fertility work up for both partners before IVF, including sperm analysis, so they aren't missing something that would make the IVF cycle fail. So you would definitely do it then. But I think you meant at what point of trying naturally should you have your husband/partner tested. The standard advice is after 1year of trying, or earlier if there are other concerns. But that is best to ask... [ more ]
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J-Pouch ForumsHelp! Need advice now!
VSL#3 probiotic
P pouchE
Scott F I think VSL #3 DS helped me stay off antibiotics for a couple of years. I still use it at maximum dose (4 packets/day), and it keeps trouble away. [ more ]
CTBarrister It's not used to treat active severe pouchitis. You need to treat the pouchitis first and once that is done, consider using it prophylactically to keep pouchitis away. [ more ]
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J-Pouch ForumsOstomy & Skin
11 days post Stage 1 w/ lots of pouch emptying
thumprharethumprhare
thumprhare I may go ahead and call Hollister as you suggest. The first time they called they recommended the diamond which worked some better. Tonight it leaked in that same belly button area. I don't know what I am going to do. If I change the flange every day or so (when the skin hurts) to get the skin healed then have a belly button leak I am going to burn through my supplies. The ostomy secrets belt is good, my only experience. The "intimate moments' (giggle/snort) is actually the most comfortable... [ more ]
Lambiepie Haha, I just called it a ring of fire because that's what it feels like! I use Hollister products, too. Maybe you can speak to them and see if they have any suggestions. I have sensitive skin, too, and have the red square, but I think it's just from removing the flange. It feels ok once the appliance is on. I'm looking for some kind of belt. Do you like the one from Ostomy Secrets? [ more ]
thumprhare Thanks for the reply. I do use a two piece system, and I am turning to a diamond shape. Sorry, I guess I should have put that in there. At this point, I have to make it a diamond shape then make a little snip of the tape, squash the ring at the place my belly button start and lay the tape in my belly button. This morning, my husband and I remeasured, got 1 1/8" so cut to fit. We put the Eakin in, after the crusting and all that jazz. I noticed that I think I may be having a reaction to the... [ more ]
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J-Pouch ForumsGeneral Discussion
level of physical activity before with UC and after laparoscopically j pouch surgery
F fightUC2
Annikki I didn't have a choice. I has acute bout of UC that was severe and was on deaths door. After 16 years with my pouch I was just as or more so active. I work out 4 times a week and walk daily up to 10km. [ more ]
Scott F Yes, *successful* J-pouch surgery is much better physically than poorly-controlled (and uncontrollable) UC. That's not really the right question, though, IMO. In order to have successful J-pouch surgery, you had to *risk* unsuccessful J-pouch surgery, and that's no fun at all. Furthermore, if meds could control your UC, the right question, I think, is if J-pouch surgery is better than well-controlled UC. Most of us, I suspect, would prefer to have skipped the surgery if things could have... [ more ]
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J-Pouch ForumsGeneral Discussion
Moong Daal
I iHateColitis
Jan Dollar Beans and lentils may have opposite effects for many, but not all. They each contain unique protiens and fiber that you will have variable tolerability as an individual. To me, there is no difference. The main factor is the amount. Too much of either causes gas and urgency. in moderate amounts, they are thickening. Jan [ more ]
skn69 I consider lentils to be a form of plaster...they litterally bind everything up in my gut (sometimes not such a bad thing) but do cause some gas...I eat them a tablespoon at a time depending on whether or not I need to be social or not. They are very healthy, full of good, bioavailable iron and mix very well with Vit C (try using tomatoes, potatoes or other veggies full of Vit C)...There are 3 colours, red, yellow or golden and green. Not sure if the color changes anything but the red seem... [ more ]
iHateColitis Thanks Jan. But then what is the difference between lentils and beans? Why do beans have the adverse effect? [ more ]
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J-Pouch ForumsGeneral Discussion
Seeking Forum for AMD Age-Related Macular Degeneration
JimInMaineJimInMaine
Jan Dollar Jim, I hope you get some useful info. For something as common as AMD, you'd think there would be loads of discussions boards out there. I suspect that since treatment is limited, there is not too much to discuss. I did find this one, but you probably already ran across it: http://www.visionaware.org/for...neration-community/1 Jan [ more ]
JimInMaine Hi again Jan — I'm replying to you here as well as you had the grace to reply to me in both threads. I have signed up for the mail-list at the MD Support website which is purportedly the "venue" for the most active group discussion. Though, so far, my impression is that the site and/or its mail-list are not nearly as active and dynamic as is the j-pouch. The MD Support site does contain a lot of information and good links so will be a very good resource. I'll try to remember to come back... [ more ]
Jan Dollar I posted a reply to your other post. This was the best link I could find: http://www.mdsupport.org/support/ Jan [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
10 days post takedown difficulty emptying
S Shainy
Jan Dollar I have trouble getting up from a low toilet. I would rather just have a low stool for putting my feet on rather than trying to get up from the low toilet. I love my higher toilet. Jan [ more ]
CeeeeCeeee A lot of my friends (we are over 70 years old) have installed high-rise toilets in their homes for ease of standing up after using them. I hate them because I do so much better emptying when sitting (closer to a squat) on a low-rise (regular) toilet. For that reason alone, I'll never install a high rise toilet in my home. I have installed grab bars and they serve the purpose of helping those of us who need help standing! [ more ]
mgmt10 Shainy, Mine was at the anastomosis site. [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
lexapro and the j-pouch
ksrksr
ksr ok, I spoke with my gi doctor's nurse and she advised me not to take anything to loosen my stool. Only water and fiber. I am going to see my psychiatrist on Tuesday and talk to him about this issue with the lexapro. [ more ]
TE Marie FYI - I too changed antidepressants 5 months ago. As the Amitriptyline dose was increased the Viibryd dose decreased. There was almost an immediate effect on my j-pouch function. I no longer need Lopermide, Imodium, as the consistency of my stool's improved. I was told by my neurologist and GI that not only was it going to rid me of my migraine headaches but help my depression and GI tract as well. It's nice having doctors that work together like mine do at Mayo's. In other words it could... [ more ]
ksr I am not taking any lomotil or imodium. I am worried about taking anything to loosen it because I don't want to have stool leakage. That has been a major problem. I am calling my GI doctor's office to see what they say. I left another message for the nurse at my psychiatrist's office. Waiting for a call back. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Eye Problems 6 yrs post op
K KDelphi
JimInMaine Originally Posted by Daffodilly: ...<snip>....I always wondered if the eye problems were from the UC as I learned the eye is an area that requires much nourishment/vitamins and I was practically malnourished for years due to UC. Just a guess. Hi Daf — That's an interesting line of thought. I also had long periods of extreme anemia, electrolyte shortages and the like. It's a pretty good bet that such "malnourishment" could have caused, or initiated, damage to my retinas. I wonder if... [ more ]
JimInMaine Originally Posted by Jan Dollar: I did some looking and you are right. Not much out there. Have you checked out the links here...<snip>.... it seems to have more than any other site I saw. Hey Jan — Thanks. I had blown through that site but you encouraged me to re-investigate. It's funny: the main group activity is an old-fashioned mail-list. I've subscribed and await the arrival of the first digest. Gotta say, it's been a few years since I've done the mail-list thing. There is a bunch... [ more ]
Daffodilly I have had the J-pouch for 5 years. I developed a problem in my right eye a few months ago; inflammation and fluid filled cysts on the macula. It makes everything look very distorted. I have had steroid drops and three weeks ago, a steroid injection in the eye. I have some improvement since then. I was diagnosed with dry macular degeneration when I was emaciated from UC. I always wondered if the eye problems were from the UC as I learned the eye is an area that requires much... [ more ]
See all 16 replies...
J-Pouch ForumsGeneral Discussion
Is there an explanation for this??
dgtracydgtracy
dgtracy I wanted to come back to this and say that after the dilation zi could go to the bathroom a lot easier. I was on antibiotics for some time after the dilation and recently ended. After ending them a few days my stool has been pretty loose and still likes to keep me going alot in the evening hours. Gas is a big problem right now. Trying to get a hold on it. [ more ]
AllyKat reconnection was only a few weeks ago. It sounds like your system needs some time to adjust. [ more ]
dgtracy Allkat this was my assumption as well. I am hoping with everything I have that mondays dilation will at least give me some answers. I'm losing my mind trying to deal with this again. I have a bidet and have not tried to use some water for that yet. Maybe I'll try. The idea is a bit uncomfortable though. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
way to help with gas when its already there and producing ?
dgtracydgtracy
dgtracy Thanks jan I believe your right. [ more ]
Jan Dollar Once it is in there, all you can do is get it out. don't slow things down. I would say the Moonpie was the worst offender. Between the very high sugar content and lord knows what else they put in there, you really put your gut to the test. I always tolerated grilled cheese fine, especially aged cheddar, not American cheese. Jan [ more ]
See all 2 replies...

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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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