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J-Pouch ForumsWomen's Health & Pregnancy
does this sound like a fistula?
fqfq
rnj2010 What options should I check into? What options have been effective for others? [I'm a little frustrated that my doc used staples, I've heard that staples more likely have fistulas as the site than the disintegrating thread (I was always concerned about that.) ] How do you like the K-pouch? My body does not like surgery so I'm hoping to find a med or procedure that might be helpful. If you want to email me instead of writing here, you can use goldenpup13 _a_t_ y a h o o - dot- c o m [ more ]
Kara Fred I had several surgeries-glue, plug, seton, visceral sealing. I had UC and a jpouch at the time and my GI was more than willing to try any biologic as long as I was okay with it. I then became a patient of Dr. Shen at the Clinic because my GI was out of options and it wasn't healing. Dr. Shen did these injections in my pouch to help seal it up but that would require several visits that I could not do to Cleveland. I remember Dr. Shen not promoting biologics at all. Because the fistula was... [ more ]
rnj2010 What surgery did you have? Do you know what all the options are (surgical and not)? Do you have a diagnosis of UC or Crohns? If UC do you know how to find a doc who is willing to try biologics? How did the surgery go? (And if you don't mind-skip this one if you do) How old were you when you have the surgery? Thanks so much for the response [ more ]
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J-Pouch ForumsGeneral Discussion
Joint Pain
GoodspeedeGoodspeede
Charlie cbnice@verizon.net ❤️
TCM Sharon, Thanks for the swimming hint. We have a community pool for summer use and our gym has a saltwater pool, so I have no excuses! [ more ]
skn69 TCM I have found that the best exercise (if you have access) is swimming...I am 'home' for the summer and our residence has a pool so I spend about 3-6hrs in it daily...although the lower back pain/sacroilitis is still there it is less present while in the water and the exercises that I do help to ease some of the severest pain> I do about 3hrs of exercise every morning. Heat helps a lot but so does ice so I alternate both. I have been off of most NSAIDs lately as per my MDs request...so... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Debilitating Chronic Muscle and Joint Pain and Losing Weight. Not making ANY progress! and need more QUALITY OF LIFE. Anyone else suffering like this?
JS Jersey Shore
skn69 Hi Jersey, I am so sorry. There are no words. But I do have some questions. Firstly, what in your opinion is the primary issue, the weight loss, the muscle loss or the pain? I know that they are intimately related but which one is the #1 concern? For the pain, I have found the only way to deal with it (but not cure it by any means) is to submerge myself in water. At home I spend a lot of time in the bath but while on vacation I spend 2-4hrs in the pool. Hot or cold, pool or sea, doesn't... [ more ]
BillV I had my BCIR surgery in April, 2013 and my surgeon was Dr. Ernest Rehnke in St. Petersburg, FL. After my consultation with Dr. Pemberton, I learned that they no longer do the k pouch at Mayo and have never done the BCIR. Cleveland Clinic does the k pouch surgery. Although I was disappointed with Dr. Pemberton’s recommendation for an ileo vs. a k pouch or BCIR (he said I was too old to get one, which is BS), he did a very good examination that confirmed that there was no cancer present. My... [ more ]
Jersey Shore Thats amazing Bill. God... You have been through a lot. How long ago was your conversion? Dr Pemberton did the surgery? Where you happy with Dr. Pemberton ? Are you happy with the results and the quality of life ? [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pregnancy and J pouch
C CandiceT
clz81 Hi Candice. You can find lots of great threads on this topic if you do a search on "pregnancy" or "pregnant" or just scroll through the topics in this forum. The biggest issue with conceiving for women with J-pouch is the potential that your tubes may be blocked due to scar tissue formation. Typically, if you don't get pregnant after 6 months of trying, you can have that looked at. As for pregnancy itself, it shouldn't be much different than a typical pregnancy. As the baby puts more... [ more ]
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J-Pouch ForumsGeneral Discussion
13 days till takedown. Essentials once I get home??
PouchomarxPouchomarx
boogiemomz ❤️
kiwiPouchnUSA I couldnt agree more. Look after your 'backside' is number 1. Always use wet wipes or water spray bottle. If possible use hair dryer afterwards ! For me the burning was the worst element of post take down recovery. In the end you can only do so much as the cuff gets burnt to a crisp anyway but do what you can to save the exterior bits while the body adjusts and recovers... [ more ]
Bama45 Awesome thanks for the advice. [ more ]
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J-Pouch ForumsGeneral Discussion
Damn leakage
PouchomarxPouchomarx
Linguist Wow, thanks Jan. I got world of information on how lomotil, imodium and stool thickeners work in the body in one single message of yours That's awsome! BTW, Lomotil is prescription only in Turkey too, although it's not difficult to get one from a GP. However, my personal experience with Lomotil did not show any superiority over Imodium in the past, so I no longer bother it. Pouchomarx, I agree with Jan on trying Tincture of Opium. I think you could give it a shot again. You guys at least... [ more ]
Jan Dollar No, opiates are not a stool thickener. Thickeners are things like Metamucil and pectin. Opiates are bowel slowers. They can treat diarrhea and cause constipation by slowing the gut. When the gut is slowed, it allows more time for water absorption. Constipation is an infrequent, firm, dry stool that is difficult to pass. Imodium and lomotil are synthetic opiate derivatives that do not act on the central nervous system opiate receptors. They work only on the gut opiate receptors. Thickeners... [ more ]
Pouchomarx I read numerous threads here saying people with leakage issues have tried codeine with success, that's why I was inquiring about it. Don't opiates thicken stool, I have heard people on them get constipated. Isnt constipation a stool that gets to thick? are you saying that a bowel slower and thickener is the same thing? getting confused now. [ more ]
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J-Pouch ForumsGeneral Discussion
Ankylosing Spondilitis
K KiwiPoucher
Jan Dollar Yes, no contraindications for Humira and Cipro. Boy, do I hate insurance companies (with a passion)! I have a lowly HMO (nonprofit), and I have never had any trouble getting approval for biologics. I was first put on them after having consistent symptoms for about six months. None of my imaging was positive. None of my labs were positive. My rheumatologist diagnosed based on history, physical exam, and symptoms. My HMO does not require preapproval, only a plan doctor's orders. The current... [ more ]
Scott F There are no significant interactions between Cipro and Humira. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch Issues
NS Nora S.
tulsamom Thanks Scott! I returned it today. Wouldn't want to deprive someone else of a very valuable box of product [ more ]
Scott F You can get a voucher for substantial savings at http://enteragam.com/hub/ Some vouchers work for a year, but this one seems to require tinkering before each refill. The voucher works at the pharmacy. [ more ]
tulsamom I don't know how it is in other states, but in Oklaoma any opiates are nearly impossible to get because of the people who have abused them. I suspect that's why this doctor and all my other doctors would rather cut off an arm than prescribe any of these. The documentation process they have to go through is a deterrent. He seems to have had really good results from Enteragam with others. But the whole beef thing is too much for me to deal with. I have decided to return the box, unopened. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Post Pouchitis Symptoms
HC Happy Cakes
Scott F It's most likely that just one of the antioibiotics is making you feel lousy, and the other is just fine. But if they aren't working, it might be time to try another. I've been on Cipro and Flagyl for a few years, so the long term thing seems to be okay ***if*** you tolerate them. [ more ]
Happy Cakes Thank you so much everyone. I did do a stool sample to test for c-diff (waiting for results) and doc put me back on cipro and Flagyl again, 500 mg each 2x/day for 20 days. 5 days into 2nd round, still feeling punk, think maybe the antibotics are making me nauseated. Have call in for Zofran. (Trying to get this nonsense under control while enjoying my vacation camping "up north") I am a bit concerned to be on this load of antibotics for this long, not been through this either. [ more ]
RHolt I am so sorry this is happening to you, after 12 years without any pouchitis. Please let us know how you are. I hope you get back to normal soon. That is scary! [ more ]
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J-Pouch ForumsFAP Forum
Getting my tubes tied?
N nana1990
LeahD I'm 23 with classic FAP and struggling with the idea of having children, too. If it's passing on the gene that worries you the most, there are other (expensive) options. I know doctors can remove your eggs, find the ones that carry the genes, and replace the unaffected eggs. Not sure about other methods. As for the desmoid tumors, that's definitely something to talk to your doctor about. Are you seeing someone who specializes in genetic colorectal cancers? There's a list of doctors online... [ more ]
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J-Pouch ForumsGeneral Discussion
Problems with Powerade?
melissa111melissa111
Alison b I drink a lot of coconut water. My Dr said it is the easiest way to get electrolytes fast- in fact in the past during war time, they have been able to do a direct IV of coconut water when they run out of fluids. Its that absorbable. I had to get used to the taste - I dont hate it I dont love it - but as long as its super cold I can get it down. That and water is all I drink now and Ive been able to keep my electrolytes in check. [ more ]
SonnyJ215 Hi Melissa sorry to hear that your experiencing this ... I was drinking Powerade and Gatorade since my takedown and I noticed from the beginning I would having way too many BMs then I realized the amount of sugar that was in regular Powerade and Gatorade so I switched to G2 Gatorade and Powerade Zero are try to stay away from dark colored ones I do orange and lemon lime .. And I drink it everyday and I mean everyday even with breakfast lunch and dinner knock on wood no problems so try to... [ more ]
melissa111 And what's a good alternative? I feel like I need something more than just plain water. [ more ]
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J-Pouch ForumsMen's Health
urinating after takedown
U UjohnjC
Erik R I have no advice for you JASON7316. But I love the Ferris Bueller reference. You made me laugh. Classic Comedy. Gotta find the humor in all this crap. [ more ]
Jason7316 I had my j-pouch surgery in 2000 and just discovered during a recent physical that I am retaining over 1,000 ccs in my bladder. I had no idea that I was so unable to empty and since my surgery was 16 years ago its not a new problem but my bladder has stretched out over time and I'm trying to get it back down before if fails completely. I just had a minor reduction of my prostate to try and increase flow and self-catheterise but am curious if anyone else has experienced this problem? I've... [ more ]
Rags After 26 years with the J-Pouch, I still sit to pee. Very rarely will I have a stand-up pee (unless I'm drinking a tremendous amount of liquids). [ more ]
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J-Pouch ForumsPouchitis
Pepto
D Denverkay
Denverkay I understand the pain, well I don't understand but I have seen it. My wife has a high tolerance. I thought she was dying. She couldn't move, vomiting, sweating, etc. I'm glad you pulled through. Thank you for your tip in the grape juice. We will add that to our arsenal. Yes, the pepto like I said has helped so much. Chewables When she gets home I'll ask her how many and how often. best of luck!!! [ more ]
Janiep I've had one small bowel obstruction and I almost died ... Hospitalized for a month and I can honestly say that I've never experienced pain to that extreme... EVER!!! I did learn after all was said and done... White grape juice breaks up the obstruction so now I always keep a bottle in the house! I live on Lomotil and Imodium has never helped me. I may try Pepto. Before my reversal (when I had the OSTOMY) I took Pepto and it helped a lot!!! Thanks for the reminder �� This site is great!! [ more ]
Denverkay Also, please hit me up. After a lot of years, I've learned some. She's been successful. Delt with her first and only blockage recently. Figured out what caused it. ..... Extended periods of time not eating, followed by a salad. No medical intervention, other than a drive to ER, IV, X-ray, and magically it cleared itself out. My honest opinion was her moving around, and car ride helped. But I'm no doctor. [ more ]
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J-Pouch ForumsGeneral Discussion
Weight loss advice post j-pouch- DC nutritionist info?
B blufnger03
Deb C Since reading a book called Mindless Eating about 5 years ago I have lost all the weight (about 25 pounds) that has crept up on me over the last 20 years. I made several changes that work for me. I bought smaller dishes, stopped keeping candy and other junk food handy, found a tea I really enjoy that usually serves the same function ice cream or other sweets used to serve. I still eat ice cream when that's what I really want, but if I stop to think about it I'll usually decide to wait and... [ more ]
Erik R I lost weight by only eating about 20 grams of sugar a day. Not eating passed 7pm. And of course no fast food or junk food. I did a little exercise everyday . I either rode my bike, did push ups, chin ups, and eventually added a little bit of weight lifting. I also walk a lot. Good luck everyone one. [ more ]
skn69 I have a sliding scale of eating, not a diet. I do not believe that diets help most people but only help them to maintain short term goals and then they go back to whatever was happening before the diet but only worse... So I believe that you should slowly but surely substitute foods. I traded white breads, cake and pastry for only whole grains. Then I waited a month until the next substitution once I was comfortable with it and it felt natural. No margarine or white fats (lard, Crisco...)... [ more ]
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J-Pouch ForumsPouchitis
Rebamipide shows promise
John95John95
AllyKat Most of the IBD drugs are off label for pouchitis. The Drs bill them for UC or CD. I'm using Entyvio now with good results. [ more ]
Linguist Hi, I know this topic is way too old but I amcurious about the use of rebamipide in IBD. It is said to help mucosal healing throughout the gastrointestinal tract. I believe it may be used as an adjuvant drug along with regular therapy. I guess it's worth to give it a shot. Rebamipide is available in a few countries only and India is one of them. Luckily, a friend of mine is India now and she is coming back to Istanbul, Turkey in a week. I have antibiotic-refractory pouchitis. I have been on... [ more ]
John95 I'm actually not sure if it's even approved in the U.S. for anything. The studies they've done with this have primarily been in Japan. I wonder if they have done more studies there since this one. I did email one of the Japanese physicians whose name is on the report, but haven't heard anything back. It may be beneficial; it just needs to be made available, provided it is safe. [ more ]
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J-Pouch ForumsGeneral Discussion
Mucosectomy or not
M Momma
AllyKat When I had my j pouch redone they did hand sewn. I have no problems with that, other issues like pouchitis not related but no leakage and can fart. Make sure you have a very experienced surgeon. [ more ]
theroninhunter Unfortunately my mucosectomy has been the worst surgery I've had. Lost nearly all control of my bowels, eating immediately forces me to use the loo. [ more ]
Pouchomarx did he have any issues with mucous leaking prior to getting reconnected? I am having some issues, sometimes I feel it coming and can hold it, but sometimes I go and check the pad and its wet but I had no idea I was leaking. scares me a bit about getting reconnected and crapping myself. I wouldn't think kegals would help cuz that has to do with muscle tone, I had the manometry test and my sphincter muscles are normal. But the mucousectomy deals with nerves down there and I am hoping I don't... [ more ]
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J-Pouch ForumsPouchitis
how long
C canlafre
Scott F If you feel fine when on antibiotics, and you feel like you have pouchitis shortly after stopping them, then you probably have pouchitis again/still. Hopefully a more aggressive round of antibiotics can get it to go (and stay) away. There's no reason to wait, unless your doctor thinks a test for C diff is advisable. Some of us have to stay on antibiotics all the time, but it's premature to assume that's your situation. [ more ]
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J-Pouch ForumsK-Pouch Korner
Solution for leakage issue
Kara FredKara Fred
Kara Fred Hi Jen- your so sweet to check up. All ok, everything same as before; just know (hope) my valve will be better and my Kpouch will function as it should. More mucous drainage than last time, and my staple incisions are a bit more tender, but I am moving along. How are you doing? Did you get all your to-go bags eventually sorted so you can go out with the myriad of supplies? �� Bummed Dr. Dietz will be gone and unsure if I will follow him to UH. He will do my follow up though at CC so glad... [ more ]
JenJen Kara, Just checking in and glad to see that, as of your last posting, you are healing well after your last repair! Hoping food gets more interesting soon and praying things continue to go well, Jen [ more ]
JLH Kara--my empathy that you have to go through this in the heat of summer, besides twice. Can understand why you don't have any appetite. I lost at least 15 pounds from my surgery and never gained it all back. Because I have to be so picky about my food here I'm not eating enough. I'll get back to my chocolate habit soon enough! Have you considered switching to UH? I would think Dr. Dietz would be pleased to have you continue to be his patient. It was really easy to get my records from... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch Looks "Perfect"
SpookySpooky
Former Member Thanks again Scott. Thanks Spooky for your thorough reply; sorry I kinda hijacked your thread. [ more ]
Spooky DGtracy - I completely understand. A few years ago I had problems with bleeding, but every time I was scoped, the pouch looked "fine." We don't always get the answers we want or need. As I said in my first post, I still have issues as well, most recently with obstructions. I also have ongoing problems with irritation and hemorrhoids, which are mostly nuisance level, but can be quite painful at times. So just because the pouch looks good, does not mean that you cannot have symptoms. My... [ more ]
dgtracy my surgeon said my pouch was perfect looking too, last scope was 4ish months ago, yet i have all these issues of not being able to empty throughout the day, it all comes barreling out in the afternoon. some days everything gets backed up and it takes a couple days to sort out. yet i have a perfect looking pouch. just because it looks good does not make me feel better. i have a new GI doc now as my normal doc moved away so i really really hope a new set of eyes will uncover something, anything. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch prolapse
kc80kc80
kc80 Has anyone had bloating as a result of a prolapse? Or would that just be another issue? I've noticed over the past week it's gotten a lot worse and I'm wondering if maybe it's an bacteria imbalance? I think I probably had too much sugar for a few days and maybe now I'm paying for it. I've been drinking lots of water, trying to stick to plain proteins etc but even on an empty stomach it feels full to the point where my pants are really tight and I'm uncomfortable in general. I've also been... [ more ]
Pouchomarx Shen noticed the mild prolapse on a scope several weeks after takedown, but him and Remzi said nothing to worry about as long as no symptoms. I was told Remzi does mucousectomy for all his redos. [ more ]
Ljz Pouchomarx, I know you had a pouch redo and mucousectomy and glad you're feeling great! Did you have a prolapse before or is this new- assuming it is. Glad it's not a probkem for you. Do you or anyone else know the reasons for mucousectomy? I understand mine is because the repair is so low in pouch but don't know how common this procedure is and what warrants it. Do most people go to temporary ileo while it heals from surgery? My surgeon said it's possible but hoping not. Would make sense as... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Yale New Haven...j-pouch surgery?
MB Mountain Baker
CTB23 I am new to the j-pouch group, but have looked for information after being diagnosed with ulcerative colitis April 2015. After trying various meds. Including Prednisone, Lyalda, Lomotil and Remicade as well as hospitalization, blood transfusions, shingles, etc., we decided that it was time to consider surgery. At 61 I did not feel that I wanted to continue with meds. that we're not really effective for me. My sister also was diagnosed several years ago with UC and we had researched surgeons... [ more ]
CTBarrister Yes, his profile looks good, and I am glad you brought up this question because I live about a 5 minute drive away from Yale New Haven Hospital. Since the time I had my surgeries in NYC in the 1990s, my insurance situation has changed. Like your sister, if I ever need a surgery again, I will likely be required to use a CT surgeon. And Dr. Reddy might be the guy. So thank you for looking out for your sister because it made me aware of someone in my own backyard that I didn't even know about. [ more ]
Mountain Baker Thanks CT. Dr. Daddy's profile looks good. Theresa [ more ]
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J-Pouch ForumsGeneral Discussion
Pain/Stretching in abdomen
PA Paul Alba
Spooky Yup. Agree with Scott completely. You won't really know about them until they cause a problem. Unfortunately, adhesions are not well visualized on regular imaging tests, such as x-ray or MRI. According to my surgeon, they can sometimes be seen on CT scan, but that is also not foolproof. I've known I've had adhesions since my second surgery, because my surgeon had to cut them down to form the pouch. Unfortunately for me, they did cause a problem, though not until years later; I had a series... [ more ]
Scott F Paula, the glib answer is you'll know if you have an issue. The behavior of adhesions depends on where they form. There's no point in worrying about them. Most people never get obstructed from their adhesions. [ more ]
Paul Alba I didn't know what an abdominal adhesion was, so I looked it up. One source says after abdominal surgery, 93% of patients develop abdominal adhesion, so that I have an adhesion but am a little worried that they can cause abdominal obstructions. How will I know if an adhesion becomes an issue? [ more ]
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J-Pouch ForumsPouchitis
frequency of stools
ToniToni
Howard B. I usually go at least 8x per day. 1 during the night. 2-3 before work, 2 during working hours, 1 after dinner 1 before bed. Throw an extra 1 or 2 occasionally I take 2 lomotil 4 X per day. Metamucil morning and night. [ more ]
Toni Dear Scott, Thanks for the response. I'm pretty good during the day but sphincter control is weak which is awkward when I'm not near a bathroom. Accidents happen. My sleep is interrupted several times during the night but the problem is worst from about 5 to 10 PM. The amount I eat at dinner doesn't seen to make any difference. I avoid high fiber foods and limit intake of raw fruits and veggies. I'm taking Lialda (related to Asacol) twice a day. Also, Immodium before meals and Lomotil when... [ more ]
Scott F Ten could be a bit of a nuisance, less so if they are all during the day, leaving your sleep uninterrupted. It's above average for a healthy, well-functioning pouch. Are you experiencing any urgency or leakage? Most find that much more troublesome than the number of bathroom trips. What happens if you delay a trip to the bathroom? I can't tell what medicines you've tried, so I can't make any useful suggestions along those lines. [ more ]
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J-Pouch ForumsGeneral Discussion
Do J Pouch patients have less toxins to worry about?
FM Former Member
Jan Dollar Sure, entirely reasonable to be hopeful of some unexpected benefits. For me, I have a couple: I was chronically anemic pre-colectomy, even in remission. Now I am always in the normal range and can even donate blood. My cholesterol levels dropped post colectomy. The colon reabsorbs bile, which is mostly cholesterol. Jan [ more ]
Scott F I don't blame you at all, Dawg. Have you ever gotten a proper diagnosis for your problem? [ more ]
Former Member Ok, can you blame me for hoping my friend was correct though since I still haven't found one benefit that made a pouch worth getting long ago? Well I don't bleed anymore, that didn't really bother me though, it was the diarrhea and flare ups that were the real problem long ago. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Uterus and tubes shifted during j-pouch surgeries
S susbo
susbo Good luck in September and keep me updated! So far, this pregnancy has been going well. Morning sickness has been pretty mild, so I can't complain! [ more ]
little greeny I am so so so excited for you. The funding program was maxed out for the year so we are starting in September. I hope your pregnancy is going well! [ more ]
susbo Little greeny how are you doing? I finally had a transfer (just one embryo) on June 1 and found out last week that I'm pregnant! Obviously it's still really early, but we're very excited and hoping for the best. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Can't poop- what could be causes?
E EmP
Alkovitch I agree, impaction is always a worry. If I hadn't 'been' for 24 hours I would be seriously worried. Long before that I would push fluids - juices mostly' and eat fruit that I know will dynamise the small bowel like grapes, plums and other fruits from past experience. I have never ever gone longer than 6 hours since surgery 17 years ago except for when I am asleep when a few trips to the loo to make sure all is quiet will allow me a good 6- hours sleep. If I want to time matters so as to... [ more ]
clz81 Passing gas is a good sign, but as Scott said, I would start pushing the fluids and some grape juice and staying off the solids until things sort themselves out. [ more ]
Scott F If you're not in pain then fluids and bathroom yoga may be sufficient. You probably should stop any slowers or thickeners in the meantime. [ more ]
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J-Pouch ForumsGeneral Discussion
Flagyl use
T TimW
Scott F I would definitely rotate antibiotics if I had three (or even just two) that worked for me. [ more ]
Jan Dollar Personally, I think it is far better to rotate different antibiotics, or "pulse" dose (where you alternate off and on antibiotics). Some are lucky and avoid side effects and bacterial resistance, but the risks are still there. I did OK on antibiotics, but still had significant pouchitis evident on endoscopy. I am now on Remicade and Imuran, which my GI prefers to constant antibiotics. Still, if I was doing perfectly on reasonable doses of antibiotics, I'd stick with that until problems... [ more ]
jmw I have taken 500 mg of Flagyl, 500 mg of Cipro and Lomotil 2x per day for the last 14 years. I don't have any side effects, but have been told to watch for tingling in hands/feet, as Flagyl is known to cause nerve damage in some. I tried going off of the Flagyl a couple of times, but regretted it (pouchitis symptoms came back). Hope this helps [ more ]
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J-Pouch ForumsGeneral Discussion
Portable Bidet
T tango9
Elisa W I don't leave home without my Brondell travel bidet. It's basically a squirt bottle with a nozzle that directs the spray up. It comes in a little carry bag, which I stick in my purse and carry. I use it everywhere--work, travel, backpacking. A little less convenient than my at-home bidet, but does the trick! [ more ]
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J-Pouch ForumsGeneral Discussion
HOT AIR VS OIL POPPED CORN
FM Former Member
Former Member I could come close to living on popcorn if it was just air popped. It still annoys my pouch like any other food but the annoyance level still isn't too bad compared to other foods I can think of. It just doesn't taste as good as the oil popped corn too. There's always the question of what do you add to it too, such as salt, butter, I can't believe it's not butter, and whatever else. I guess you could go completely nuts and create your own caramel corn. [ more ]
CeeeeCeeee I could live on popcorn and many times it is dinner! Thank God my pouch feels the same way! [ more ]
Jan Dollar I think most microwave popcorn contain oil. For me, I see no difference. I don't eat too much at a time (maybe a few cups) because the hulls are sort of irritating. Plus, they get stuck under my gums. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
dilation daily for life?
pouchingtonpouchington
lauren972 Yes, it's possible. I'll be dilating daily for life [ more ]
pouchington Thanks Jan. Makes sense. Just wanted to confirm that sometimes it's warranted... [ more ]
Jan Dollar I suppose. If weekly dilations cause bleeding, you need more frequent dilations. The reason? You want to dilate to maintain the opening, not tear the tissue to create a new dilation. Tearing will just cause more scarring and make things more difficult. Some people just have more stubborn strictures. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Is Straining Harmful?
J Jake54
MIKEEY Thanks Scott F, seems you always try to help many people. [ more ]
Scott F It's likely that each of us has a different idea of how much pressure should be called "straining." Just don't beat the heck out of yourself. [ more ]
MIKEEY Thanks so much John, hearing this scared me don't want hemorrhoids fistula or anything like this if at all possible. Take care and God Bless. [ more ]
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J-Pouch ForumsPouchitis
straining to empty?
L lrdo
jmw I had similar symptoms for a couple of months, three years ago. Went to the doctor, where I was it was most likely a mild flare. I knew it didn't feel the same as usual, but figured he knew what he was talking about. Matters progressed until I was in severe pain, vomiting, etc. After five days in the hospital trying to get things moving, they discovered through testing that I had a complete blockage caused by adhesions wrapped around the small intestine (I had my colon removed 15 years ago). [ more ]
Way2go I too have had problems for the past couple of years feeling blocked and needing to strain. I have had my Jpouch since 1991. I never really noticed that many problems with it until the past five years. I had a balloon dilation procedure a little over a year ago, but I never noticed much difference afterwards. Lately I have been doing something similar to what Wes mentioned, but not with a candle. I purchased a set of Hegar dilators on the web. You can find them starting around $20. They... [ more ]
jeane Is this method still working for you? When you shave the candle is it the length and width of your thumb? Do you insert it in a glove or something for fear it could break off and do you move it around at all or just let it sit? Also do you purchase a fleet enema and just fill with warm water? I'm having so many issues with a stricture I'm desperate to try anything. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Helpful tip about how to pass gas without having an accident
alecz222alecz222
Paul Alba I will lay on my stomach to pass gas. Opening is still sort of upward, and easier than doing all those maneuvers. I also sleep on my stomach. I never have accidents when I sleep on my stomach, but occasionally will if I sleep on my back or side (especially on my back). [ more ]
Nora S. I don't think I can do that move at work. Plus, that's a lot of work just to pass gas!!!! I'll just stick to going to the bathroom, way easier. And my boss won't be calling the white coats to come take me away!!! 😁 [ more ]
dgtracy I've had a few select times where im standing and able to pass gas. its a nice feeling but scary at the same time lol [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Help, I'm in a mess/Shen needle knife op
SolomonSealSolomonSeal
SolomonSeal It seems to me like the procedure initiated a flare up. Cipro/Flagyl brought me back to about where I was before the scope after a week of treatment. I am on Budesonide. Sleep is very rough and I'm not able to rest much without percocet. Things are back to "not great," and I'm back on my feet, eating, exercising, and functioning sufficiently. Talked to multiple surgeons who give a very different perspective to Shen, including regarding pouch excision. I will speak again with Shen and two... [ more ]
Mysticobra Solomonseal. Your post was inspiring. You sound very confident. I'm not embarrassed by mine either. All at work know I have one but they forget about it. I work outside in the TX heat. When it get sweat on it I lift my shirt a bit and stand in front of a fan to dry it some. Of course I don't do it in front of everyone. I do it off to the side. I just don't like the wafer getting wet and then drying time after time. Kinda makes it a little stiff. Otherwise I have no problems with it. Lol.... [ more ]
Jan Dollar Well, your actual height is less of an issue than having a long trunk and narrow pelvis. Most males have a narrow, deep pelvis, while the female pelvis is more wide and shallow (for childbirth, obviously). This only matters if there is a problem with getting the blood supply to reach and they have to do special surgical "tricks" to add length. From what I've read, ischemia is defined as inflammation in a sharply defined segment, as opposed to random areas. Treatment is the same, except that... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
3 step pre sacral sinus tract repair
J jmurray
Anthonyv Sorry to bring up an old post but I also have a pre sacral sinus. The doctor doesn't know if it's an issue or not but thinks I may have a chronic low grade infection from it. What at are people's thoughts and experiences on this? [ more ]
Nomoremeds For pouch re-dos at Cleveland Clinic, they recommend to wait 6 months in between the loop ileostomy and actual redo to let things calm down. Then 3 more months for take down. Everyone is different though. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Need Help!
P PineApple
bev 69 Sounds familiar to the problem i had years back, I had some small gall stones but docs said it couldn't be that because they were sooo tiny.They gave me e verything under the table they could think of for heart burn,, acid problems etc.. Long story short , I asked them to remove my gallbladder & alls been fine since.. ALL THE BEST BEV [ more ]
PineApple when I am sitting I have no pain at all. only when I make extra effort like running, fast walking , biking, stairs climbing. adhesion is new reason which I did not think about [ more ]
Scott F The acid problem (or even ulcer) could be past the stomach, perhaps in the duodenum. In that case you'd feel pain but not heartburn. [ more ]
See all 6 replies...
J-Pouch ForumsOstomy & Skin
Great new bag!
LambiepieLambiepie
TE Marie I have the small clips on right now and feel more Secure! That is my major beef with Convatec's bags. Velcro is better than those stupid clips but the clips are great. I think I might have said coloplast instead of Convatec in an earlier thread...... [ more ]
Lambiepie TE Marie, I spoke with an ostomy nurse during my perm ileo surgery hospitalization about my concerns about the end of my bag opening and the contents spilling out. She had an ostomy and she was the one to suggest the mini binder clips. By far the best piece of advice I've ever gotten from any professional. I had my bag open in public with my temp ileo and somehow no one saw but it was horrifying. Yeah, I don't like the feel of a belt, either. It feels like a girdle or something. I was always... [ more ]
TE Marie I am going to dig out my binder clips right after posting this! I tried them too but the wafer is too hard. I was wearing the double belt and all but it wasn't for me. I just can’t stand a damn belt. I would and did get better wearing times when wearing it with all of the different kinds I've tried. [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Blood in stool
D Dunninator
Jan Dollar Of course it depends on the amount of blood. But this is not too uncommon. Could be cuffitis. Not an urgent concern. Sometimes it is just irritation from all the stool coming through. If it is a lot of blood, it could be something more, like a burst blood vessel. If you are feeling lightheaded, rapid heart rate, or other symptoms of hemorrhage you should go to the ER. Jan [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Stick with ileostomy or try Jpouch?
DW debs w
debs w Hi Strange I have come up against this before with the CCG, if out of the area. Whether NHS or Private it seems. I was turned down over year and half ago for help with my Insomnia/Sleep issue, and was so desperate for help, and they turned me down! That's how serious they take not sleeping as a health problem! When I went to Docs, I asked if I could do the Choose and Book system, as apparently this is straightforward to do, but he said before this he must apply to the CCG for funding and... [ more ]
Former Member Debs, has you GP given you a reason as to why CCG funding must be applied for ? It's my belief that an aplication for CCG funding is only required when the treatment or proceedure you're seeking is not normally available on the NHS. Due to your current predicament and that you've had a " temporary" ileostomy for nearly six years; your the ideal patient for referral to St Marks The procedures and specialism from St Marks which you require is all available on the NHS I was initially referred... [ more ]
Former Member Yeah, your GP will have to inform St Marks of who you are under now and outline your condition and what you've experienced but your current surgeon will only become aware of this if St Marks has reason to gather more information from your current surgeon. Hospitals and Specialist prefer to gather all the necassary information from the patient once a referral is made, only the very basis of details are provided. St Marks will request copies of your Hospital Records and results of all Test... [ more ]
See all 45 replies...
J-Pouch ForumsGeneral Discussion
Remicade and Lymphoma
IsolationaryIsolationary
skn69 I have lymphoma but was never on biologics. I had a number of swollen glands and then infected glands and during removal they sent them out to pathology and received a surprising report...since they were all removed in the region there was no follow up. I appear to be fine. Sharon [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
How far up is a loop ileostomy ?
R Roger1066
Former Member As a preventive measure I suggest you also apply ilex protectant paste around your Stoma and if you can source them or a similar product, also apply a Salts Stoma Collar ontop of the paste and over your Stoma. Ilex paste will protect your skin should your Stoma leak again in the future, it can also be used to treat the skin if damage by the contents of a leaking ileostomy bag [ more ]
Jan Dollar It depends. The surgeon tries to make it as far "downstream" as possible, but even a few feet makes a difference. You can take up to 8 Imodium a day. It is quite safe, even at higher doses. However, there just really isn't much of a benefit beyond 8 per day. The main danger with Imodium is constipation, but you'll know if you have slowed too much. Jan [ more ]
See all 2 replies...

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William J. Johnson
bjohnson@j-pouch.org

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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