J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
The s-pouch is an ileoanal pouch, like the j-pouch, but is s-shaped instead of j-shaped (3 limbs instead of 2). They use it when the j-pouch will not reach. But, it is more prone to structural problems. Jan [ more ]
I never heard of the S pouch. Is that like a k? [ more ]
Depends on the pain, Caroline. I have a site that is my old colostomy site (even though I no longer have a colon) and somewhere around there I get sharp pains...when I have a blockage I know that that is the site (middle left side) and I massage it, do whatever I can to prevent it from getting worse and get onto a clear liquid diet and add heat...and jump up and down a lot ...but it is my sore spot/danger spot...even when the blockage passes it is occasionally there...it is probably a spot... [ more ]
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J-Pouch ForumsGeneral Discussion
I had my j-pouch created and ileostomy taken down in one surgery, so when I woke up I was cut up pretty good. The NG tube was tried with me when I started to throw up after surgery, it also didn't work so I just threw up the old fashioned way. It last for a day or so then everything woke up and worked like a charm. I remember it being very hard for the first few days after surgery. Take it super slow with liquids/foods the next few days. Everyone is spot on about the getting up and walking... [ more ]
Randi - I'm so sorry you had a bit of a setback. But I'd wager things will progress now and all of this will be a distant fading memory soon. kjeane - I can't even imagine repeatedly vomiting after surgery. Ouch! kathy [ more ]
Randi, So sorry..I can empathize totally. Take your food intake VERY slow...liquids, ice at first etc. Also if you are able to, WALK as much as possible. I know that sounds impossible now, but trust me it will help. They never successfully got the nose tube in me after 2 tries and I told them 'I could vomit myself without their help' as I vomited very time they tried to insert it (the lovely banana spray they squirt in your throat with no warning helped bring everything up also). At that... [ more ]
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J-Pouch ForumsGeneral Discussion
Ray C. just bumping this thread because I have not heard back from you since getting your original PM to which I could not respond. PS just tried to send a PM but don't know if it got through. [ more ]
Your PM is showing as locked in my PM box - it has a lock icon on it. I can read it but cannot respond. Please unlock it. [ more ]
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J-Pouch ForumsGeneral Discussion
Kathy, Thanks for the refferal! Ok, I am a health nut when it comes to pouches and believe that a healty body makes for a healthy pouch...so, in that line of thinking... Parsley pesto: Take a large bunch of washed and dried parsley, 3-6 cloves of garlic and put them in a food processor or blender and blend until well chopped...add half a cup of olive oil, salt and pepper if you can...blend another couple of seconds and keep in a glass jar in the fridge. Make the same thing with Cilantro and... [ more ]
My advice would be to figure out which food does best with the new pouch. Once you figure that out then go online to find recipes with the ingredients that do well. You can find cookbooks for all sorts of things but you'll never find a cookbook that is completely tailored to your particular needs, likes, and dislikes. I find it much easier to just look up recipes online. Once you find something that works and that you like, start your personal 'cookbook' recipe collection. You might want to... [ more ]
I'm in the same boat with trying to learn new healthy recipes. I'm making a really healthy chicken stew at my parent's place this weekend, we're going to make it together then she'll give me the recipe. It's all from scratch, super easy to make, you'll have left overs for days, and best of all, it's very healthy for you. I'll post the recipe up this weekend so you can try it out. [ more ]
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J-Pouch ForumsGeneral Discussion
I'm 8 years out and have been sleeping through the night for 7 of those years. I know that I'm lucky, but I really only have problems when I'm bad. Beer and salsa are my worst problems, but that's to be expected. I treat it like a hangover, it's sometimes worth it. Good luck with getting a full night sleep. [ more ]
Thanks for all the support, im definitely going to think about my intake now in terms of gas [ more ]
I def. don't drink any carbonated drinks or anything that will cause excessive gas . I do however have my one cup of coffee in the morning and it doesn't seem to bother me. Also, I don't hold it. When I have to go I go. I use my upstairs bathroom because that is where my bidet is at and there are times when I barely make it there in time. Evenings are definately worse for me. I don't have the pain you guys are having and I hope it eases up for sure for you. [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks everyone. I figured it would be good for a while still, I just wasn't sure exactly how long, given that it already expired 7 months ago. But actually, I do recall reading somewhere that medication such as Tylenol is still good even 2 years past the shelf expiry, while cough syrup generally has a shorter shelf life, though that tends to be due to the other, non-medical ingredients which may go rancid. Anyway, imodium costs a pretty penny, even at Costco. Definitely no reason to toss it. [ more ]
Thanks Jan, I didn't know that! Never had an issue with out of date imodium yet, I use it too fast i guess :P [ more ]
Most meds are good at least a year or more past the date (even a decade or more in many cases), paticularly if stored correctly (tight lid and not exposed to heat). The date is not truely an expiration, but a guarantee of potentcy. http://www.health.harvard.edu/...es/update1103a.shtml Jan [ more ]
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J-Pouch ForumsGeneral Discussion
I think that's the only solution here, for you both to respect eachother's comments, but don't quote each other or add your own opinion to their statement. If you two do that then I don't think anyone will feel alienated, and we can all still got both of your opinions...just seperately!:P [ more ]
I don't respond to her posts unless she starts posting nonsense about mine. Go back and read her response to my post and ask yourself whether it was called for. Subsky saw it for exactly what it was, and called it immediately in the next post. Then KathySmith tells us that she was really posting for the benefit of Minnie. Oh really? Then why are you quoting my post and spinning it and offering a purported opinion which is contrarian to nothing that I actually wrote? She could simply take the... [ more ]
I am truly sorry if I did anything that offended you Breezie. [ more ]
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J-Pouch ForumsOstomy & Skin
nope, never been sore or swollen that I noticed. But I have always worn clothing On another running note... be sure you HYDRATE... before, during, and after. [ more ]
Thanks for the information ladies. I will definitely wear something tight over it as suggested. Liz, does your ileostomy ever feel sore or get swollen from running? I don't think I'll be running any half marathons anytime soon (good for you!), but definitely am trying to get back into shape after surgery. Thanks again! [ more ]
I have run 3half marathons with an ileostomy. I just wear TIGHT shorts that fully cover the ostomy. None of those fancy cute running shorts with little panties in them. I wear more like "boy shorts" varying lenghts depending on the weather. [ more ]
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J-Pouch ForumsPouchitis
hot bath, hot shower,heating pad. as kathi said-move around. walk walk walk. twist. and even try the red wine. [ more ]
Kathy: I think the pain is in waves but I am also cramping from my fibroids, that is the surgery I am having. I hope that does not confuse the issue. Also I had my husband go to the pharmacy and ask what to do they dispensed Laevolac syrup. I guess it is some sort of saccharide. (lactulose) Anyway I made sure he told them i do not have a colon and they said it was OK and this was normal course for pain killer constipation. One other thing though, my husband was rubbing my tummy for me... [ more ]
Yes, people have found that the white grape juice seems to really help to get things going. But if you have a partial blockage you might want to move around as much as you can. Drink warm/hot liquids. Get on the floor on your hands and knees and quickly way your hips from side to side. Are you noticing pain in waves? One thing to note, if this is a partial (or full) blockage and you start to vomit or you're passing NO stool, you need to get to the hospital. But if you were getting sick... [ more ]
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J-Pouch ForumsGeneral Discussion
Your daughter is a fighter. She has the wonderful support of caring parents. I've prayed for her everyday and will continue. Good thoughts, prayers and hugs for a smooth and speedy recovery to good health! [ more ]
I have followed your story for several years and I know that you have done everything for your daughter and researched this disease to the 10th degree. I am sorry she has to have surgery but I am hoping that in a couple of months both you will see the healthy daughter you have been missing. All my best to you. Sue [ more ]
It must be unbearable pressure having to make this kind of decision on behalf of a child. I am actually in awe just thinking about it and how I would feel if it were my kid. Plus, I have been there on the other side of it. I had UC from age 9 and although no surgical decisions needed to be made until I was 29 years old, I recall the immense worry and pressure my parents felt as I bounced from one hospital to the next, 3 in total during the 4th grade. My parents are the kind of people that... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I have had very negative reactions to Flagyl. It makes me feel so nauseous and on the verge of vomiting the entire time I am on it. I haven't been on it in years, as my docs always prescribe something different due to my reactions. If it the side effects are worse than what it is meant to treat, I feel it's not worth it and would suggest you ask your physician for an alternative. Best of luck! Colleen [ more ]
The only reaction I have to Flagyl is experiencing a slight case of nausea the entire time I'm on it. I get the dry heaves! When given to me in the hospital, IV, they added some anti-nausea meds. Because I don't really mind losing my appetite for a few days, I don't mind this symptom. As long as I stay hydrated, it is a 14 day diet for me! [ more ]
I was on flagyl when I had C. Diff. in my colon, and, yes, I had problems with it, too. In fact, it seemed to increase the bleeding I was having. Plus, every day in the afternoon, I would get terrible pain in my upper back. It was unbearable. I was on Vanco at the same time, but it was the flagyl that caused the problems, as I was on Vanco for the greater part of two years and never had side effects like that from it. I hope you feel better soon. ~ Laurie [ more ]
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J-Pouch ForumsGeneral Discussion
Well that's sort of perfect. It will be YOUR independence day. The very best of luck with your surgery. I hear only very good things about Dr. Varma! kathy [ more ]
Well at least you know what you'll be in for, and how the j-pouch will be much easier to go through then that! [ more ]
Thank's for the encouragement everybody! I went through a major surgery once already back in my teens. I had two lobes of my left lung surgically removed due to a major infection caused by pneumonia. Between the pneumonia and the surgery I spent close to half a year in the hospital. After that I have a hard time even walking into a hospital to visit someone. Sure was hopeing my that hospital stay days were over for good and then colitis came along. [ more ]
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J-Pouch ForumsGeneral Discussion
Kathy, lettuce is one of the few if not only food I can still identify in the toilet. This didn't happen to me either long before I received my J Pouch. Compared to other foods I've digested it's very quick at speeding right through my system. That's not to say other foods don't trouble my pouch but many fruits and vegetables rank at the top of my list. Therefore, I can certainly understand why lettuce is included as "foods that may increase pouch output" on this link ... [ more ]
Lettuce has never given my pouch any trouble. I only have a bit on a sandwich or a side salad here and there. [ more ]
Yes Kathy that is very true. We see food in the toilet that coloned people will never see. I find it quite funny sometimes! [ more ]
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J-Pouch ForumsHelp! Need advice now!
That's awesome the drops are working for you Brittany! I've never been on them before, but if I ever run into a situation where imodium isn't working, I'll look into trying the drops out. [ more ]
Thank you everyone I have been taking the drops, and it has done wonders for me!! I am able to sleep throught the entire night, and leave the house with out worrying about running to the bathroom! The taste is nasty, but I am getting use to it. [ more ]
One of the advantages of mixing with a bit of water is that you can premix and carry with you in in small bottles (I use small plastic, the size as used for carrying liquids on a plane) The other advantage and why I always do it even at home, is it doesn't taste near as foul. [ more ]
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J-Pouch ForumsGeneral Discussion
I must have been lucky because the only strange sensation I experience from scoping without anasthesia was when the surgeon inserted air into the area he was examining. I watched him remove polyps and watching the process was also strange...using the snare to grab and remove them. When one removal resulted in more bleeding than the surgeon was pleased with, he cauterized the area....watching my inards smoke was the third weird part of the experience! No pain, however, and I'm glad I was able... [ more ]
Polyp removal shouldn't hurt either, but it can take more time. I've had a number of them removed, but not more than one or two during a single scope. You definitely need to be reasonably still, so the doc can snare the right thing. Some people are just more sensitive to the pain from the air that is pumped in. Plus, if you are inflamed, your gut is going to be less distendable. Even with sedation, when I had colonoscopies while in a flare, there was much more pain/discomfort. In addition,... [ more ]
JohnJthompson, Sorry about the polyps. I agree with Jan about the biopsies not hurting but polyp removal is an entirely different thing. You tried it and now you know to always get medicated! [ more ]
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J-Pouch ForumsGeneral Discussion
I say go for the Coke if you're craving it. Let it sit for a bit to remove some of the carbonation. Since you had your ileo for 4 years you might indeed have lazy sphincters and they might need a little help in remembering what their job is. You might want to see if there is a rectal therapist in your area who can help teach those lazy muscles. kathy [ more ]
Thanks I will try that [ more ]
I am so sorry that you are going through this...I know how painful, embarassing and destructive to the ego this can be (beware of butt burn...wash your bottom as often as you can with mild soap and water) but nature has a nasty way of telling us if you don't use it, you lose it....but it is not a permanent state...Keep up those keigels! Tighten, loosen, hold for 10sec...And increase the time as you go...deep breathing and holding your breath deep in your abdomen at the same time...inhale and... [ more ]
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J-Pouch ForumsGeneral Discussion
I had a one-step 20 years ago because high-grade dysplasia was found during a routine colonoscopy. My surgeon said that I was a good candidate for a one-step because I hadn't been on prednisone (UC)in many years, was a good weight, and was in relatively good health. He did warn me that he wouldn't know for sure whether I would have a one-step until he took a look inside. I'm 5'10" so he wasn't sure if the mesentery artery would be long enough to connect to the pouch. My pouch has worked very... [ more ]
Another reason why my one step j-pouch surgery was possible was because I had an end ileostomy for a year, so my body was fully healed and healthy when I went in for the j-pouch. Plus I'm sure the pyoderma gangrenosum skin ulcers I had all around my stoma site lead him to keeping everything inside me if possible, lol. [ more ]
I was so sick and had so many complications that the planned three-step ended up taking four. And I had one of the best surgeons on the US. If you've got a surgeon who says you're a good candidate, then what's the benefit to a planned two-step? None that I can think of. But as said, run from a surgeon who guarantees a one-step since the final assessment will happen when you're under anesthesia already. Sometimes someone can seem a good candidate, but then seeing the organs up close can... [ more ]
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J-Pouch ForumsGeneral Discussion
That's such a better idea! I wish I'd known that before I had to do it the hard way. I've had the tests done at e hospital before & that was fine, I just went with the little 'hat' in the toilet & left it & the nurses did all the 'dirty work' I'll keep your advise in mind if I ever have to do this test again! [ more ]
I was lucky mine was done while I was at the hospital, they just put one of those toilet dome things under the seat, I went, then a nurse came and took it away, couldn't complain :P I remember having to do them at home by myself though, I was very careful. Spooky I did the very same thing you suggested with the plastic wrap when I did it years ago, someone else suggested it to me and it worked very well. Not only that, and most importantly it made it less gross and a lot easier clean up. [ more ]
When I had to do it, I was just given a platic "biohazard" bag. I luckily didn't need to use vials. But this way would work just as well; you could still use the plastic wrap for the collection, and then use the spoon to collect for the vials. It's still much better than trying to hover over a ziplock bag. Good luck! [ more ]
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J-Pouch ForumsK-Pouch Korner
Just checking into the thread since it went OT for a bit but I am doing really good for the past 2 days. I wasn't 3 days prior, went off the antibiotics and switched to probiotics. My pouch was bad and I had the usual glass shards pain shooting up my rib cage and pouch and everything was just pure clear liquid coming out of me. So went on cipro and few hours later I was good. I am now on a sublingual previcid for my severe inflamation in my esophugus and gastritis. My gas is still there but... [ more ]
Adam.. I don't have a kpouch but had the jpouch removed and "barbie butt" just 3months ago. This pressure and pain you describe was happening to me last week and then like you said it all burst out with fluid everywhere, guess it was an abscess. So Vanessa.. should you have that checked out too as mine was started with what seemed like a blister. I saw the doc yesterday and was told this could just keep happening. I had abscesses while hospitalized and had one drained in another surgery and... [ more ]
Carrot & apple juice....I forgot...the 2 things that I have found that are astringent enough to 'dry out' a wet gut (read: high motility, over liquidy stool etc)...also, and you may find this useful if you are trying to taper off of all unnatural products, Active Carbon....you can make it yourself by burning a piece of toast but you can find it in pill form at your local health food store...it is another 'grandma's remedies' or in this case, grandpa...in the war when everyone was... [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks so much for posting, Sharon. I'm going to pass this along to several moms I know ... [ more ]
I was just watching a 'Natural News' article on fake foods, notably, fake blueberries in foods and how they substitue red dye & blue dye along with hydrogenated fats and liquid sugars for blueberries...this is the stuff that makes us sick...when we think that we are eating healthy, pay the price for healthier foods and realising later that it is all a scam and we are eating nothing but artificial stuff that is killing our guts...I am pasting in the link for anyone interested... [ more ]
Andrea, I saw it here in France on a private chanel but I can't seem to find it in the T.V. guide...if you type in to your search engine 'research, autism, intestinal flora, clostridiup,vancomycin... you might come up with it. I was blown away but the case studies...I know of a lot of people who had perfectly healthy children who suddenly regressed and became autistic...and I have been screaming silently for years that it just is not normal...I have campaigned against antibiotic distribution... [ more ]
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J-Pouch ForumsGeneral Discussion
It seems so strange to experience constipation after years of the opposite! I believe it is all part of our new parts learning to adapt. There is so much trial and error in learning to work with our new plumbing. For me, eating an apple takes care of the "constipation" issue. Simple fix, for me anyway! Hang in there. It does get better. If not, don't give up. There are answers out there but they are not always obvious. [ more ]
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J-Pouch ForumsGeneral Discussion
thanks for the response. im not sure if it was the alcohol, because i tried again and didnt have the same problems... crazy stuff here, this j pouch is!!!! [ more ]
I was stubborn from the start and decided I wasn't going to cut anything form my diet, and so suffered through sometimes weeks of gas or pain from lettuce of broccoli or something, and now, 17 years later, I can have anything I want. It wasn't always easy, but it's been fine. Some people find they can't tolerate things they once could, and trying to work through it is harder than giving it up, and some aren't going to be able to. If this is your first time trying alcohol, try a smaller... [ more ]
Kathy I need to thank you for the beet post. I get fooled every time! I don't eat them too often but I swear I start crying every time i see the toilet that color. I sure this is the big one! Thanks for the laugh, I really needed that. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Lupeeloo, Just to reassure yourself along the way you can give yourself deep tissue massages with warm oil over the scar sites that will help you to 'feel' your scar better and ease the stretching...you don't need a specialist or doctor for that, just apply warm oil (olive oil is just fine and you can heat it up with a few sprigs of lavander or thym to give it a nice scent) and massage in circles over the scar putting mild pressure with your fingertips as you go...if you feel pain then ease... [ more ]
Here in the US IVF drs only follow patients through six weeks, then you get released to you OB. Not sure if UK is the same. [ more ]
The good news is that the hormones of pregnancy that loosen your ligaments to allow for uterine growth, and delivery later on, also relaxes the tough scar tissue so it can stretch. The external scars will not be an issue at all, and adhesions will stretch and possibly break, causing some pain, but again, not a problem. Enjoy your pregnancy! A question though. Doesn't the IVF team that facilitated your pregnancy also follow you during the pregnancy? Jan [ more ]
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J-Pouch ForumsGeneral Discussion
That`s why I became active on this site again, to help out others and let them know it gets better. I remember when I was in the hospital years ago a guy who had a j-pouch came in the visit me, and tell me about the surgery. He was very helpful, down to earth, and most importantly let me know what I could realistically expect from j-pouch life. He also told me about j-pouch.org, which I became a member of my first week out of the hospital after my one stage j-pouch. For years I haven`t taken... [ more ]
Subsky, I hope some of your great attitude rubs off on me! We have not gone through all we have to give up now. I'm too stubborn to stay down but it sure is hell some days! [ more ]
Thanks I'll look that up about the VSL#3DS. I also hope it's not Crohn's. Last scope a received a couple months ago my GI took biopsies and they came back negative for Crohn's, but he said the biopsies can be tricky. Also the physical thickening of section of small intestine, not just interior inflammation as UC is, made them think maybe Crohn's. My plan right now is to use this hitting bottom as my chance to climb back up. I've been feeling so ****ty from the pouch pain and frequency for so... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Yes, this surgery isn't a "cure" for UC...more like a solution to the problem so all the other little nastys that go along with UC may still end up afflicting us. [ more ]
It's not uncommon, as removing the colon may not immediately address other areas of inflammation. In fact, I suffered most of my intraintestinal manifestations AFTER most of my colon was removed. I still had the rectum and my UC there never went into remission, but after my subtotal colectomy, I developed a retinal inflammation and later on, severe mouth ulcerations (not just the common tongue ulcers; this was all over my gums and I had difficulty eating). I was also worried about Crohn's,... [ more ]
Yes its common. In fact I have a doc appt next week for the bad arthralgia I'm having. I thought all of the extra-intestinal issues would all be gone after having my entire jpouch recently removed, but how wrong I was. I just can't stand it when people say having your colon removed cures UC. [ more ]
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J-Pouch ForumsGeneral Discussion
Hi Minnie, Many of us have been where you are now, and we are proof that it WILL get better. I am so glad that you went to the ER and you are in the hospital. I despise being there myself when I have to go in, but it is really the best place for us to get all our issues resolved. I pray this nasty obstruction passes. How you have been feeling since you have been obstructed is NOT an indication of how you will feel when it has passed. I promise you. It takes patience, courage and faith. I... [ more ]
I went to the ER last night and they are keeping me for testing/observation. they think it's a partial bowel obstruction since I threw up bile 5 times yesterday. I was very careful about eating soft bland foods, but I guess you could still get an obstruction? My stools are green diarrhea too so they are checking for infection. I hope the day will come soon that I will say I am glad I had this surgery. Thanks for the kind words. [ more ]
How are you today? If you are still vomiting, please go to the ER. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Seconding Jan. It could be an infection, like an abscess, that needs care ASAP before it gets worse (a week's wait should never happen), or it could be scar tissue forming. If you're not sure, then go in. Especially when you're still healing, it's much better to be safer than sorry. [ more ]
Not an emergency, but you need to call your surgeon. Sounds like it is an infection or possibly just a seroma. Either way, probably needs to be drained. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Where is the itching occurring? If it is on his skin a dermatologist can scrape the skin, look at the scrape samples under a microscope, and tell you in less than 30 seconds whether it is yeast. Yeast infections can be defeated through antifungal creams, powders and pills. [ more ]
Another good one for the itch is Calmoseptine. It's generally a moisture barrier, but the menthol relieves the itch. Just don't use too much, especially with children. It can almost burn if applied in too thick of a layer. Good luck! [ more ]
Did they also test for yeast? Yeah, that itch is maddening. There are two products that help me. One is OTC Nupercainal - it's located in the same vicinity as Preparation H. The other product that really helps is Ilex. Drugstores can order for you or you can order it directly from the company . It's the king of butt creams. You need to put a thin layer of vaseline over the top so the gluteal cheeks don't stick together. But I usually don't bother with the lube layer. kathy [ more ]
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J-Pouch ForumsGeneral Discussion
Do you currently have a loop or end ileostomy right now? Have you discussed how many parts your surgery is going to be? If they go non invasive, then time in the hospital won't be more than a week or so. Depends on how healthy you are and how your surgeon wants to go about hooking you up. My j-pouch was supposed to be a two part with a temp ileo but he liked how the pouch looked and hooked it up right then. I love it, you need time for your body to adjust, but with a healthy lifestyle and... [ more ]
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J-Pouch ForumsGeneral Discussion
Could just be a pulled muscle, a torn adhesion (not a bad thing, just a thing), or a kink in your intestine. The fact that it is better probably means it will resolve on its own. As long as the sharp pain is not there and it is improving, you can just wait and see. But, if it persists more than a few days without gradual improvement, call your doctor. Obviously, if it gets worse, particularly if the pain is sever, you need to call sooner. Some of the complications at the stoma site can be... [ more ]
I had my takedown on May 21st and I have a spot like that on top. So, I'm very interested to hear some responses to this. Sorry I'm no help [ more ]
Wow you are doing good walking 3 miles a day so soon after takedown. I had takedown March 18th and that same area you are describing is still a little sore. Maybe you are overdoing it a little and just need to take it a little easy and see if that helps. Good luck to you! You are doing much better than I was after takedown that is for sure! [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsPouchitis
I would like to commend all you posters for having the energy to do these types of work-outs! (I am proud that I have started walking my dog around the park, lol!) Kudos to you pouchers!! [ more ]
In my experience working out has always made me feel better not worse, as long as I'm healthy to begin with. For myself, it's if I work out when my pouch is already inflamed, then working out just creates more pain/urgency than before. Personally I think working out or doing any strenuous activity when you have bad pouch pain/frequent diarrhea is just going to add to the problem. Those activities require you to absorb and use water/nutrients much more than normal, and if you can't keep up... [ more ]
whatever your issue is i do not think it has been causing pouchitis or by extreme exercise..if you were okay in every other way(muscles,over tired etc)..but some people get sick from extreme or exercise without jpouches..and it sounds like something different than your normal pouchitis issues... i have worked out for many years if anything work out make me feel better.. [ more ]
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J-Pouch ForumsGeneral Discussion
Looks like your health is dependent on whether or not the yankees win husky, hopefully they have a good season :P I used to be a light smoker, a few smokes a day. I quit a few weeks ago, I don't have the lungs/body for it. And cigar smoke would make anyone light headed if you inhale it, even if you're a regular smoker. Picked up some cuban cohibas to smoke last time I was out of the country, still have one left to light up for a special occasion [ more ]
OK guys, let's stay on topic. We are not a sports forum. Jan [ more ]
rusty, Yankees play the Nats this weekend, I too am looking forward to seeing Bryce Harper and the surprising Nats. [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks skn69. I have not only tried one veggie so far and it is squash. I don't think I can try and others yet. I had my take down March 16th, 2012. I am finally feeling better this week. The doctor doubled my medicine and I think it is working. I do eat blueberries but just a few at a time. We do grow our own garden so I will have cucumbers soon!!! I am just excited I have slowed my diarrhea down. I take 2 lomotil and 2 loperamide four times a day now. I hope this works. I am also on Cipro... [ more ]
Granmaof1, Bananas are not the only fruit that contains potassium...you can try tomatoes if you like or potatoes (not fried but steamed or boiled) and cucumber have tons of trace minerals without all of the calories...basically if you eat fruits 'of the season' all year round and a good healthy quality of them daily as well as lots of green veggies in steamed form then you should be ok...but add sea salt to your veggies. Sharon [ more ]
I only drink Smart Water and Target has a brand also and both have electrolytes in them. I am so glad I found them. Krogers have Smart Water on sale this week. Buy 15 and they are only $.67 each. I stocked up. This is all I drink now. I do feel so much better. I also hate bananas but I found that I love dried banana chips. So that may help me also. Maybe this will help you out also. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Same thing happened to me initially. I was only going once a day! But it didn't last that long. Drink some juice and eat some veggies to get things moving along. You should initially see a high risk OB for them to evaluate you, but like me, you may be told that a normal OB can handle your pregnancy. If you don't have any other complications, a regular OB can manage your pregnancy with you. The high risk OB told me that since I had successfully had a baby vaginally in the past and if the baby... [ more ]
Congrats!!! walk walk and walk. Please try to move as much as possible. Also drink lots of water and keep active! Good Luck and have fun being preggo I loved it! [ more ]
IMO, all pouchers should be seen by a MFM (maternal-fetal medicine specialist aka high risk obstetritian - not a gyno, you see an OB for pregnancy), because the pouch surgery can cause specific complications or problems that a normal pregnancy would not encounter, such as blockages, tearing of adhesions as the baby grows and breaks up scar tissue (not much you can do about that) and then there's the issue of delivery and whether or not the "works" down there can withstand a vaginal delivery. [ more ]
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J-Pouch ForumsGeneral Discussion
liz11 - Thank you so much for your post. I am going to get a scope tomorrow to see what is going on. My surgeon's nurse is leaning toward stricture - thank you for the warning. Ughh... doesn't sound fun. Did you need any dilations after that one? [ more ]
could be an abscess or stricture. I had tons of mucous discharge between 2 and 3 and then it reduced but I ended up having tons of pain. Seems I had a stricture, so I ended up having to have a dilatation under anesthesia between step 2 and 3. Just be forwarned if your surgeon tries a little look and see in his office first. OMG.. that was the worst pain I ever had. After that failed office scope he scheduled the dilatation for 2 days later. [ more ]
My GI was recommended by my former GI when I was living in Chicago. He then recommended my surgeon who he works closely with. I adore both of them. And yes, I'm a nurse but not at NYP. I'm actually a nicu nurse so absolutely no help when it comes to all of this. [ more ]
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J-Pouch ForumsGeneral Discussion
Mmmmm Pirates Booty is the best! My kids favorite snack. [ more ]
I do have a problem with popcorn and corn on the cob but my sister-in-law turned me on to "Pirates Booty". I like it better than popcorn. It is just like popcorn without the hard hulls and it comes in different flavors. My favorite is the white cheddar. Yum, give it a try. I bet you like it. KangaRoe [ more ]
I don't get the hulles even though I should, it is better for your teeth. I found out I can eat popcorn with my BCIR at an awesome restaurant called Salt&Fat in NYC. They bring out popcorn popped in bacon greese instead of bread! Another way I pop it is now in coconut oil. All natural and the flavor with the coconut is really good! [ more ]
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J-Pouch ForumsGeneral Discussion
Thank you so much for sharing your experience so completely. It sounds as though you had and are having the very best of care. Best wishes for a thoroughly positive outcome! [ more ]
I just wanted to add, for those interested: there was NO PREP for this EUA other than not eating/drinking past midnight. No fleets, no drinks, no nothing. The surgeon and her assistant just said "they don't do that here". So I just have to wonder why they're required for pouchoscopies by so many doctors (including Shen).... [ more ]
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J-Pouch ForumsGeneral Discussion
Super. That just cheered up my day [ more ]
Yay. Something new to worry about. [ more ]
Oh that's lovely, isn't it? I couldn't get the links to work but I can just imagine how happy the articles made you feel. I guess there's nothing to do but wait around. Hopefully it will never be something you have to deal with. kathy [ more ]
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J-Pouch ForumsGeneral Discussion
I too have been taking probiotics forever and have not gained weight through the years; I haven't been terribly careful with what I eat, but only lately have been trying to eat as Rebecca described, and probably most importantly, don't eat a lot ... [ more ]
i do not buy that study..there could be so many other factors like is everyone eating the exact same foods everyday that is the people they test,how many calories are they taking in and so on.... i do not get direct connection to probiotics.. i take them and manage my weight fine its because i am careful of what i eat.. if i eat certain things i will gain weight.. if i don`t i will not..i need to avoid sugars(sweets) and bread mostly...and i have to increase my protein intake and lower my... [ more ]
I was thinking the exact same thing Jan, Darn! Another reason (excuse?) why I can't loose weight! Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
I had incisional repair surgery that he was going to do laprosopically that ended up open as it was too large. I'd suggest to take care of it while it's smaller, if he thinks it is going to get bigger. [ more ]
Hope, I won't tell you to live with it although for some it is possible...I would say that laproscopic surgery is more or less a walk in the park compared to everything else that we have lived through...I had a small per-stomal hernia that grew quickly and caused countless problems...they fixed it traditonnally twice and then had to fix it through laporoscopy...much easier and a much better fix. With lap surgery you go in in the morning and can be back in your bed that night or the next... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Ahahahahaha! Thanks Sharon! LOL. Minty fresh! [ more ]
Not to belittle your concern but...things should come out smelling nice and minty Sharon [ more ]
Thanks everyone! I just had a very warm chicken noodle soup and some warm tea. I feel less nervous! Thanks! Hopefully it's dissolved by now! [ more ]
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J-Pouch ForumsGeneral Discussion
I had iced sugar cookies. The burn on the way out was almost unbearable. Stay away from surgary foods in the beginning! Rice and soup are your friends. I also convinced them to let me suck on cantelope and watermelon, as long as I promised not to swallow them. So tasty. [ more ]
one of the first substantial meals i had in the hospital was grilled cheese and french fries, which they said is their "test food" post op....looking back, i wouldnt have gone that intense.......i ended up sticking to eggs and toast the rest of the time i think.....bagels maybe..... [ more ]
Everyone's different. I had california rolls and cooked-type sushi the day after i was released from the hospital with no problem For me cheese was (and can still be) pretty horrible. Pretzels, bread, pasta with a non-tomato based sauce, potatoes, and lots of soup are foods I would recommend. -Sara [ more ]
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J-Pouch ForumsGeneral Discussion
i dont knwo what it is, but my best guess is that its just sore from all the squeezing. and possibly the remainder of our colons just getting irritated from the same thing. hmmm. [ more ]
Exactly! [ more ]
i get a soreness feeling in teh pouch area, more by my tailbone, and it also comes and goes. id lilke to know what it is too. i feel like for me it COULD be diet related, or it also just seems to happen more often when im going a lot, or toward the end of a 24 hour period where im into my 8th 9th 10th crap of the day... hmmm... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thanks Kjeane & Liz, I too have the joint problems and sweats but have fibromyalgia and other problems. I can't tell what is causing what anymore but am pretty sure it is all autoimmune relates - as far as the doctors can find. Liz I am so sorry you had to suffer so much and it had to be horrible if CC didn't do a revision. kjeane you tell it like it is, I am a crab too but I don't have to deal with many people as my children are grown and living out of state. I wish they were closer. My... [ more ]
Liz, I too suffer from the symptoms you describe from pouchitis except my frequency is tolerable (nighttime seems a bit worse than daytime). The constant fatigue and body/joint pain can be unbearable at times and I often get the sweats out of nowhere. My GI just recommended a pouch decogram (not sure if right term) to see if I have functional problems with my pouch as well. My surgeon told me my pouch should expand to the size of a small football after the adaptation period and I was... [ more ]
I had cuffitis and pouchitis together. Horridly. I was going about 40-50 times a day immediately from takedown. Was thrown to the side of the road by my surgeon and left undiagnosed for almost a month until I got back to a GI doc. Cuffitis seemed to tame down with daily canasa suppositories. Bleeding pretty much stopped and decreased going to about 20+times a day. Never bothered me doing rectal meds. If it helped me by reducing bleeding and frequency I just carried on. I had been on rectal... [ more ]
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J-Pouch ForumsGeneral Discussion
They had to cath me too like mgmt10 - the nurses did it in the room, ouch. I had my first BM 12 hours after the surgery but my female bladder wanted to take a few days off. [ more ]
I just had my ostomy closed almost three weeks ago. I was in the hospital for exactly one week. It was an easy stay, though- I wasn't catherized either, and was up and moving around very soon after surgery. I would definitely say that the surgery itself is a quick recovery. [ more ]
The average is 3-4 days. However, complications can arise you are not prepared for. My stay ended up being exactly two weeks. My bowels woke up then went back to sleep and I had to have the NG tube put in, then I got some fluid pockets in my abdomen and had to have drains put in. I am 8.5 weeks post op now and feeling so much better and back to work. Hopefully you won't have any problems and you can go home in the normal time frame. I was not catherized. Had to get up to pee not long after... [ more ]
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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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