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J-Pouch ForumsGeneral Discussion
Diet/Grains
mgmt10mgmt10
Scott F Linda- Try the "Find" tab near the top of the screen and you can locate and read many previous postings about SIBO (small intestinal bacterial overgrowth). I believe there is no known connection between gluten and IBD. --Scott [ more ]
lclassen Ok... this may be a silly question, but what is SIBO? Also, is there a connection between gluten intolerance and the inflammation/auto-immune issues which cause UC? Thanks, Linda [ more ]
Savannah Marianne, I had almost the same thing happen and also am about 4years post take down. I grew sensitive to grains I had been eating as a major staple in my diet such as oatmeal and rice. I also grew sensitive to apples, watermelon, broccoli and potatoes. These foods all became triggers for excessive gas and bloating even though I had previously eaten them without these symptoms. I have largely eliminated grains, starchy carbs and other high FODMAP fruits and veggies and find that I feel much... [ more ]
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J-Pouch ForumsHelp! Need advice now!
# of BM
M MAS
Bebekspor I was still going about 15-17 times a day at that point. It really is difficult. Katie [ more ]
MicheladelfinaTX You're going to hate me for this answer, but everyone is different. Generally speaking, your pouch is still very new. Keep in mind that our bodies weren't designed to work in this way, and your new system will need time to adapt. I have had my pouch for 7 years and in the beginning it was awful. Now I go about 8 times a day (night included), though you can try to adjust your diet to see if certain foods and behaviors help. You can also check with your doctor about using immodium or lomotil... [ more ]
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J-Pouch ForumsGeneral Discussion
Travelling home after takedown ?
FM Former Member
Bebekspor I had a hard time with all the bumps and potholes along the way (about 2 hrs from Boston to Maine). I won't sugar coat it, it made my insides feel like they were moving around. We stopped once and I had a hell of a time going. I was an unlucky one who was plagued with urgency and incontinence from the beginning, and it's taken me a while to figure out my new plumbing. I wore a diaper on the way home just in case. I will say that my bms were very infrequent for the first few days bc of how... [ more ]
Former Member Thanks for all the very helpful suggestions and opinions. Cutting the journey in half, not something I plan to do but if necessary, suppose I could but then it's hanging around at a railway station for 45 mins for the next train, might as well just stay on the train. If BMs are to an extent I must leave the train, I won't fancy exploring unfamiliar surroundings, not knowing where toilets are. Staying in a hotel sound logically but unfortunately if BMs are excessive, that too will be an... [ more ]
ks1905 I've been lucky since my first BM with my J-pouch it has been very controlled and no urgency, I can wait hours from the time that I think that I need to go and then actually having to find a restroom. I hope that you have the same luck as I have had. How about stopping halfway home and finding a place to eat and use the restroom or stay overnight in a hotel and making it a 2 day trip? Is that an option for you? [ more ]
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J-Pouch ForumsPouchitis
Food for those on low carb no sugar diet
elsiezeeelsiezee
elsiezee Yes, at this point he couldn't tolerate any other rice. Jasmine rice is still working really well and he eats a lot of it. [ more ]
Savannah Hi Elsiezee. I just saw your post and am curious about it. Was your husband sensitive to other kinds of rice? I am also experimenting with a low sugar, low carb, low FODMAP diet. I am sensitive to most grains, including white and brown basmati rice. I haven't tried jasmine rice yet so I was wondering about your husbands experience with other kinds of rice? Thank you. [ more ]
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J-Pouch ForumsGeneral Discussion
home 2 days from takedown
allswellallswell
MAS Hang in there, it does get better. I was you 5 weeks ago and things are slowly getting better. Ask your dr. for lidocaine this worked wonders on my anus for the pain. It was so bad I couldn't sit after 1 use of lidocaine I felt relief. I also took lots of sitz baths (3 or more a day) and I used barrier cream or vaseline for a skin barrier. I also used baby wipes sensitive skin with aloe and vitamin E and toliet paper to dab off moisture from wipes (never wipe only pat off) and use spray... [ more ]
Scott F My surgeon started Lomotil and Metamucil as soon as I started eating. It was good to have some tools to work with. [ more ]
allswell Today was bad. It actually hurts to sit because my anus is throbbing. Is that normal? I took one lomotil because I was desperate. [ more ]
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J-Pouch ForumsGeneral Discussion
Is J pouch butt burn temporary
FM Former Member
maria I do not eat veggies yet except beans and carrots cause I am scared to experiment yet. but today, I had tomatoes jus the juice of it so far it was okay. I am craving for salad greens but according to my diet I am on lw residue diet. I will wait for another 3 months to start eating veggies! Yesterday mny friend offered me tofu with cheese and tomato sauce and mushrooms. I had tofu , it is perfect no watery stools. Thai is my first food aside from meat, fish from being in the hospital for... [ more ]
Jaypea It has been about 9 months for me and I still occasionally get BB and terrible itch. It is nothing I can't manage with Calmoseptine and Cottonelle wipes. Usually it is caused by something I have eaten. I can no longer tolerate citrus or tomatoes. [ more ]
maria Thank you Gin. Have to try all it's a hit or miss. [ more ]
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J-Pouch ForumsGeneral Discussion
Consultation at Cleveland Clinic for canadians
RM Rich M
Rich M Hi Rick1e, Thank you for your reply. Do you have any advices about how to get an appointment with these doctors? Also I would like to know more about the cost. Do the RAMQ pay a certain amount? Do you prefer to communicateby PM? Tell me if you speak french. [ more ]
RickIe Hi Rich, I am from Montreal and have been going to the Cleveland Clinic for the last 4 years. I have had 2 surgeries there for a j pouch redo. My finally surgery is In September. I started seeing Dr. Shen to help save my J pouch (which was done in Montreal).After trying several treatments he said My problems where mechanical so he suggested a pouch Redo with Dr. Remzi. It is an amazing place and the top doctors for J pouch surgery. [ more ]
CJB Mark, I hate to share my surgeon with anybody because I want her all to myself!! I really love her. I highly recommend the team at the Jewish General. I had my one-step j-pouch surgery there in 1996. My pouch is still going strong. Tes medicins sont a quel hopital? C-Jay [ more ]
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J-Pouch ForumsGeneral Discussion
Permanent Cipro
S Spogi
CTBarrister My entire adult professional career life (22 years) has been spent working with a J Pouch and virtually all of that time has been spent rotating antibiotics to treat pouchitis. So the only "normal" I know is this existence. I do not believe things would have been markedly different if I had a healthy colon and no IBD, although I will never know for sure. I really think the key thing is whether the treatment is working at controlling the symptoms of the disease. This is where there could be... [ more ]
Spogi Thanks to all of you that have replied. It is always good to know that there are others out there battling with similar problems, and by the sounds of it, winning. I will keep on going with the cipro for at least as long as I can, who knows, I may find a way to adjust the dose and with some dietary changes, keep on going forever. I have one year left of a temporary contract which allows me to work from home. Though once that is over, I will have to get myself well enough to tackle the... [ more ]
Rebe0505 i too have been rotating antibiotics for years even had a run in dec of no antibiotics for three months did well but things started to deteriorate thereafter..up and down days..made me pretty crazy..i had started my low carb diet at time which i till maintain because i think it lowers my amount of antibiotics i need....never could stay on any antibiotic for so long a period always built resistance..most people do.. as far as cdiff test..i never had to be off antibiotics to take test.. [ more ]
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J-Pouch ForumsGeneral Discussion
Questran-A: help for Butt Burn & urgency
GinLynGinLyn
Uc-Danielle i had butt burn for the first 4 months after surgery. but i was going thru twice the pain since i deveolped a fistual right after my final surgery. they tell you it takes a year for the jpouch to really heal and to work fully and they are spot on about that. i lost a lot of weight from the 2nd surgery and after my takedown i couldnt put any weight on andwith the fistual it was just awful. but as soon as that year marked it was like night and day. i felt even better than i did a month prior... [ more ]
GinLyn Ha, Marie, I am a lot harder than that to offend! I hear you about all the meds; thank God for pharmacies and doctors who keep track of interactions; I'm not sure I'd ever be able to keep it all straight. I was wondering about the metamucil as I have used it before with great success and have a ton left (it is by prescription only here, believe it or not!), but he thought I'd better use this stuff for a while. Hopefully things will be much better in a few months; I already have so much more... [ more ]
TE Marie Sorry if I came off as telling you to change GinLyn. It's working for you so don't change! Recovery was hell on earth for me and I wish you the best one you can have! I have a prescription filled of it that I never used, so that's how close I came to using it. If I were not on so many medications I would have tried it myself Everything will get better, it just takes a long long time to recover. [ more ]
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J-Pouch ForumsGeneral Discussion
What is SIBO?
LambiepieLambiepie
Lambiepie Thanks for your replies and suggestions, KNKLHEAD and CTBarrister. I'm wondering if I've had SIBO all of those times that I had symptoms but showed no signs of cuffitis or pouchitis via scans and my GI threw his hands up in confusion. From the number of mentions on here, SIBO is definitely a real thing and common. Shouldn't my GI know about it? I suspect I'm the black sheep of his j-pouch patients because I present with so many problems and that all his others are doing well. [ more ]
CTBarrister Imodium will not do anything for SIBO, although Pepto Bismol might. Basically antibiotics or probiotics and dietary elimination of carbs/sugars/high FODMAP foods are the primary treatments. [ more ]
aka KNKLHEAD Hi. I'm not an expert, but my wife was diagnosed with having too much bacteria using the breath test, SIBO. The doctor suggested she not do anything too drastic, but she has cut down on "foods that encourage too much bacterial growth" -- sweets, Etc. She is also doing quite well without gluten, when she can. Hope it helps. [ more ]
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J-Pouch ForumsPouchitis
Antibiotics - side effects?
B Brows
Scott F Seeing your doctor sounds like a great idea, Brows. [ more ]
Brows Thanks Scott. I haven't really felt much of it today. Maybe I should just call my GP and get checked out in general. Could be something else is up or they got advice... Somehow easier to explain things too than over a hurried phone call. [ more ]
Scott F While you can't be sure the symptoms are from the medications, it's prudent to presume so. Flagyl has roughly the same warning as Cipro: "The appearance of abnormal neurologic signs demands the prompt discontinuation of Flagyl (metronidazole) therapy." This includes the sort of peripheral (limb) sensations you described. Good luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Is this normal during recovery?
K krittyd
wsh6745 I had the same trouble and pain that he is describing. When the pain hit, it immediately brought me to tears. For me, they thought for sure the pain was my uterus getting in the way of the pouch but finally over the past 3 weeks or so, the pains are starting to go away. I've had a stretch of 6-7 days without pain and then I will get them back for a day or two and they go away again. I had other people say they experienced the same thing and it just went away at about the 6 month mark, which... [ more ]
Lesandiego I can rarely expel gas on the toilet (if his pain is from gas). I have to lay on my side with knees bent. This helps release gas without releasing stool. Maybe he has cuffitis? [ more ]
krittyd Thanks for your response. Do you know what causes this problem and why the Cipro worked to stop it? What made your Dr. finally put you on Cipro after 6 months? I hope my husband doesn't have to suffer that long! No one should have to go through that! Fortunately, he has a job that he can do most of it from home or we would be in BIG trouble. I will let him know about the yoga poses too. Thanks [ more ]
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J-Pouch ForumsGeneral Discussion
Flagyl
MysticobraMysticobra
CeeeeCeeee I definitely know I'm taking Flagyl when I'm taking it! My main symptom is nausea. I just live with it because, for me, Flagyl works. Fortunately, I don't need to take it very often. Oh, I try to take a priobiotic (Align) at the same time I'm on Flagyl. Best wishes! [ more ]
Brows I found Flagyl likes company - it gave me nausea until I started taking it with some sort of meal every time. Not sure about the rest though... [ more ]
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J-Pouch ForumsGeneral Discussion
New to site
C Chayes
CeeeeCeeee I only take a probiotic (Align) when I'm prescribed an antibiotic (for any reason). Good idea to develop a relationship with a GI doc or a CR surgeon. For the first ten years after takedown, my surgeon did a full on scope every year. No problems except some minor polyps which he removed during the scoping. Since the 10 year mark he only wants to see me (for a scoping) every three years (unless I'm having a problem). I prefer seeing my CR surgeon to my GI doc. My GI doc is knowledgeable about... [ more ]
Chayes Thanks for the input. After much reading on this site I have realized I need to start seeing a GI doc again, so I have scheduled an appt with my pcp (primary care physician) to get a referral to a GI doctor. I have been very blessed, I feel, to have been able to control my j pouch on my own for the past 10 1/2 years. Although it is scary to think about going to a new GI doctor it's even scarier to think I could develop problems and not have a doctor familiar with my case. Thanks again. [ more ]
Scott F I didn't bother with probiotics for the first 6 years or so. They won't do you any harm, but it's less expensive and less hassle to skip them unless you turn out to be prone to pouchitis. [ more ]
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J-Pouch ForumsGeneral Discussion
Maybe pouchitis...?
rachelravenrachelraven
rachelraven Thankfully, today I feel a bit better. I went back FODMAP yesterday, and took it easy on my gut. I'm so frustrated by my body these days. I'll have one week of "ok," and then the next week will throw something bizarre at me... and it'll last 7-10 days... and then it'll go away. I cannot even fathom why this is happening to me these days, and I'm, again, completely frustrated. I have an appointment Thursday with my IBD GI, so we'll see what he thinks. My guess is he'll say stay off the Canasa... [ more ]
Scott F What a nuisance, Rachel. Maybe it would help if your GI had a look. It sure could be pouchitis, which hits each of us differently, and you've described what happens to me when I stop antibiotics. Cipro changes the gut flora dramatically; I'm very glad it's available to me, but I suspect I'll never get all of my pre-Cipro flora back. [ more ]
rachelraven Thank you all for the advice. Never had this issue before STARTING this dang Canasa. Ugh. [ more ]
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J-Pouch ForumsGeneral Discussion
quick Q about Flagyl allergy
GinLynGinLyn
Scott F I'd skip the bracelet. This is being called an allergy, but it's actually an "adverse reaction." Medical records do a poor job distinguishing between allergies and adverse reactions, and that's mostly okay, since the point is chiefly to let health care staff know to avoid the medication in the future. Not only would it be unusual to give Flagyl to an unconscious patient, but a dose or three would likely have very modest consequences. The neuropathy generally becomes permanent only after... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pressure in vagina?
LaneyLoveLaneyLove
TE Marie I've heard a lot about pelvic floor therapy with Physical Therapists. I think maybe that might help you. Hopefully someone with experience will post! Did you ask your OBGYN about it? Maybe s/he could set you up with a PT. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Straining for urination & BM's and pain
W wsh6745
TE Marie I'm a woman but can tell you from my experience that at 4 weeks this doesn't sound unlike my experience. I still have usually have a BM whenever I urinate and vice versa and my take down was the end of 2010. In the beginning I would stand up and sit down over the toilet and sit on the toilet and bend over to achieve another BM while there. I learned that if I got up and started walking around I'd be right back there in 5 minutes going again. I'm glad he is going to his doctor as I did have... [ more ]
krittyd Graemek- How were you diagnosed with a long rectal cuff? Are there any plans on another surgery to have it shorten? Your symptoms sound very similar to my husbands. [ more ]
krittyd My husband is going through a similar thing. He had his takedown surgery about 4 weeks ago. At first his recovery was going extremely well but on day 6 things changed dramatically. He has severe pain off and on throughout the day/night and has a very difficult time urinating. He can not urinate without having a BM. He also can not have a BM sitting or squatting, he has to stand up. He finds that if he tries to sit then he has to strain to get even a small amount out and the pain from... [ more ]
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J-Pouch ForumsK-Pouch Korner
Considering K-Pouch UK
S Spogi
Spogi Well I have had my appointment with Prof Mortensen, and the upshot is that there are two surgical options for me. The first is to try and remove part of the cuff of the jpouch to reduce the irritation, and the second is to go for the k pouch. Both have the worst case scenario of a permanent ileostomy, so I reckon I may as well go for the whole hog and have the k pouch done. Removing part of the cuff is just as risky and would only partially solve the cuff issues and none of the j pouch... [ more ]
skn69 Spogi, 1 of your problems sounds like a case of cuffitis...an irritation of the rectal cuff that is left in during the creation of most pouches...that cuff is part of the rectum and therefore suseptible to the same problems as you colon was...there are creams and treatments for chronic cuffitis that you may wish to try before moving to the next step. The cycle that you describe sounded so terribly familar...like a chronic blockage and I would have told you to have a small bowel x-ray done... [ more ]
BillV Spongi, I assume in reading your posts that your doctors have ruled out a pouch reconstruction to eliminate the second chamber, which might result in a more functional jpouch. If you do decide to go with a K pouch, having occasional high liquid output would make more frequent emptying of the pouch necessary, a minor inconvenience. With a normal pouch capacity of 600-1,000 cc’s, you can go a number of hours between intubations. You will know that the pouch is becoming full when you have a... [ more ]
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J-Pouch ForumsPouchitis
VSL#3 DS Was A Complete Fail
CTBarristerCTBarrister
TE Marie apa and others, thanks for including the recommendations for using more than one dose per day. I am going to increase my dosage. Especially since I've discovered I have a "large" pouch and now have a confirmed pouchitis diagnosis. In the past it wasn't active during pouchoscopes. I use one DS per day and take it while taking my antibiotic, at least 3 hours in between doses of the antibiotic. I don't care if my insurance won't cover it at this point. s.boulardii is the c.diff prevention of my... [ more ]
CTBarrister I have not given up on it. I am currently taking xifaxin morning and night and one packet VSL#3 DS in the middle of the day. I will try going off antibiotics again in another week or two when I feel good. The 4 packet a day dose has to kick in at some point, the question is will I ever be able to make it to that point without needing antibiotics. My deteriorations when I stop taking antibiotics have become intolerable within 6-10 days. If it takes 30 days to kick in I will never make it that... [ more ]
apa As we all know, all bodies are different, but I would definitely recommend giving VSL #3 DS another shot at the 4 packets/day dosage. I had NO improvement with the regular strength VSL and also no improvement with taking 2 DS packets/day (took for 6 months), but a few months after starting the 4 packets/day my symptoms dramatically improved. I had my surgery 4 years ago and have battled Chronic Pouchitis since June 2011. I've been hospitalized multiple times since my original surgery, but... [ more ]
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J-Pouch ForumsHelp! Need advice now!
CT enterography
B BrittanyKay
TE Marie Take a big straw with, in case they don't give you one, to drink the barium with. I can't get it down without a straw. Put the straw as far back in your mouth as you can and drinking it will be much easier. I've never found the injection to be too bad, it just makes me feel warm and then like I am peeing my pants, but I'm not. They tell me I'm going to feel this way each time. I've been told by coloned people it causes constipation but no problem for me, it went straight through. As tests go... [ more ]
CTBarrister Mema, The Volumen, while not something I would order during Friday Happy Hour, is not the most vile tasting diagnostic test beverage I have had to drink. They will probably have flavored choices for you like pineapple or coconut. To me the worst part of the MRI and CT Enterographies is when they inject the contrast. It burns. Good luck with your MRI Enterography and let us know how it goes. [ more ]
Mema 1 Sorry to hear that you're not able to get off of the antibiotics. I try to avoid them as much as possible, but if I have to have them then there's no choice. I had a flexible sig today and am having an MRI Enterography a week from tomorrow. Not looking forward to it, I can't stand feeling this way much longer. Am dreading drinking that stuff, although the prep for the flexible sig is worse than that one. Feel good!! [ more ]
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J-Pouch ForumsGeneral Discussion
Big Pouch, what does it mean when you have one?
TE MarieTE Marie
TE Marie Thanks ladies Daisy18, Thanks for telling me about the size of your big pouch as I've been wondering about that very thing! I am going to email my GI and ask. I want to know how far it expands into my abdomen. I am sorry you've had to undergo 2 surgeries recently and hope they are your last. [ more ]
beckysmom Te Marie, so sorry to read all you are going through. Hugs and prayers [ more ]
Daisy18 Having a big pouch doesn't necessarily mean anything bad. I too have a big pouch. Mine has been caused by two twists and prolapses due to NO scar tissue to hold it in place! I had emergency surgery in Jan due to twisting and my pouch was "the size of a football"! I can't even imagine. Then in March I had another surgery to tack down my pouch permanently. While my pouch did shrink after my surgery in Jan. it is still large and was even before that because of the previous twisting. Although my... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchitis with blood loss?
JK Johnny K
Johnny K Really? I thought the Cipro would help in case their was some pouchitis or maybe an ulcer up higher in the unseen area. She did also say that there is a chance of Chron's in that area as well. I really hope that's not the case. You're not giving me much confidence in the GI, LOL!! Thanks for the responses, though. [ more ]
Jan Dollar Oh, I did not see a mention of a pouch scope! But, yeah, there's a whole lot of gut in between what the scopes can reach. I doubt the Cipro makes a difference one way or the other, but it makes the doctor feel useful. Jan [ more ]
Johnny K Jan, she found the old blood when looking at the pouch. By old she meant from the previous day or two. I thought that was excessive myself for pouchitis, but then I've never had a bad case of it. She also said there could be an issue in the part of the intestine that they can't reach to see. Said if it happened again they may try the camera pill. I just hope its something the cipro can fix. Never found an ulcer in pouch or stomach, even though my stomach has been rather upset for several weeks. [ more ]
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J-Pouch ForumsGeneral Discussion
JPouch 3 Stage Surgery
C Cornwalldream
GinLyn I had three stages as well; was too sick for one or two stage surgery. Recovery time varies, of course, but what you're describing sounds totally normal. (VERY) Generally speaking, 6 weeks is a minimum recovery time for abdominal surgery. Do be very careful with any abdominal exercise at this point; for instance, be careful when getting out of bed. Rolling to one side and pushing up with your arms is probably better at this stage than simply sitting up. Watch the walking as well. While... [ more ]
Endi I had surgery in three stages. I first had my colostomy with an ileostomy in March 2006. Then a few months later I had my j-pouch construction surgery July 2006 and a still had a temporary ileostomy that was made out of a portion of the small intestine above the j-pouch. Then I had a 3rd surgery that only consisted of getting rid of the temporary ileostomy September 2006. This last surgery is the "Take Down" that you are hearing about. And honestly the third surgery really wasn't a big deal... [ more ]
MicheladelfinaTX I had toxic megacolon leading up to my first surgery, so it may not be the same scenario as yours; I had step 1 in November 2006, step 2 in February 2007 and step 3 in June of 2007, but that was after a major complication that necessitated an obstruction surgery. If you're in better health than I was I would think you would be able to have your process completed a bit more quickly than mine. [ more ]
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J-Pouch ForumsGeneral Discussion
Moved to Naples, FL - Need a J Pouch Doctor
Furious PouchFurious Pouch
marz Dr. Raymond Philips in Naples and Dr. Charles at CC weston. I have been to both. Dr. Philips is very familiar with j-pouches and pouchitis. Dr. Charles is head of the GI dept and it takes a while to get an appt, but they do J-pouches in Weston so probably everyone in the GI dept. knows about pouchitis. Dr. Philips also is in charge of the Chrons and Colitis support group in Naples that meets at the library on central. He did a scope for me (I have a BCIR)in Naples and found pouchitis. [ more ]
Endi Cleveland Clinic of Naples, Florida http://my.clevelandclinic.org/florida/default.aspx [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Scheduled C Section?
P prairiegirl
prairiegirl Thanks everyone! I've also discovered that my hospital generally schedules them 10 days before the due date. But... I'm due January 4. 10 days prior to that is December 25. I don't know if my OB is around Christmas week, so I expect it will be either the week earlier or the week later. Hopefully the week later (Dec 29) as I'd prefer not to go before 38 weeks unless medically necessary. [ more ]
lholdem I was scheduled 5 days before my due date. I had started having intermittent contractions but not active labor. [ more ]
Clicky I was 37 weeks on the dot but was very sick with relentless pouchitis. [ more ]
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J-Pouch ForumsHelp! Need advice now!
leakage
U UjohnjC
UjohnjC its been non stop at night i wear depends at night had to change it in middle of night just now before this week it was always very light leakage scaring me [ more ]
MicheladelfinaTX I had that for a while with both my end and loop ileo's. I grabbed a few of the cloth covered, rubber-backed mats from one of my hospital stays and would keep one of those under me while I slept to keep the sheets from getting dirty, as it seemed to happen more so at night for me. [ more ]
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J-Pouch ForumsGeneral Discussion
Green Poop?
MysticobraMysticobra
Mysticobra Nope... No burn. It only lasted 20 hours so I don't think it was bile just something I ate. [ more ]
scallop I have problems with bile and yes, the poop is green. But, I also know when I have too much bile because my stomach and butt usually burn pretty badly -- are you having any of that or does it just look green? [ more ]
MicheladelfinaTX My favorite color of poo followed an Edible Arrangements fruit basket I received awhile back. I love fruit and devoured about half of it with my husband one night. Forgetting that some of the white chocolate covered strawberries were dipped in blue sugar, I went to the bathroom to discover Smurf Poop. I felt like a superhero!!!!!!!!!!! [ more ]
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J-Pouch ForumsGeneral Discussion
Vitamins and Burning Stool...arrrrg!
Libby1Libby1
techwrench Magnesium and potassium electrolyte supplements cause wicked burning and cramping problems for me,and I do not take them anymore.It's just too concentrated when it goes into the pouch all at once. Laxatives contain magnesium,so that's another undesirable effect. [ more ]
Twilight I had a problem with burning and ended up with an ulcer just inside my rectum. The only thing I could narrow it down to was vitamins that had a yellow color in them, like B-2. Might be a matter of just trying a different brand of those vitamins or a lower dosage at one time. [ more ]
Endi I'm sorry. I've never heard of this before. Are you taking a high quality form of calcium that is easily absorbed? Maybe you could try taking your calcium with magnesium and zinc. Mag and Zinc help your body process the calcium more easily. Also, here is an article that I found from Harvard's website: Acid rebound - Calcium carbonate may cause acid rebound: the stomach overcompensates for the high dose of calcium carbonate, which is alkaline, by churning out more acid. For that reason,... [ more ]
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J-Pouch ForumsGeneral Discussion
Erythema Nodosum!!
K Kelsie
rachelraven Used to get it before my colectomy. Have never had it since. Diclofenac is a strong NSAID, and likely set off my kid's first flare. [ more ]
MicheladelfinaTX I've had it twice on the front of my shins...both times it was just before I started to flare. It was about six years ago, but if I recall I think they started me on pretty high doses of prednisone and they gradually began to go away within a couple of weeks. [ more ]
Stephaniesays91 Yes!! And it was the most painful thing ever! I was off work for 8 weeks as it started in one leg and travelled to the next! I was just given diclofenac to help and see a dermatologist who didn't do a great deal tbh! Genuinely wouldn't wish it on anyone [ more ]
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J-Pouch ForumsGeneral Discussion
Injectafer?
B beckysmom
beckysmom Thank you for your response JHendrix. My daughter had to have the infusion yesterday and she did well with the Injectafer! Hopefully it will bring up her levels. Thank you for your kind thoughts. [ more ]
JHendrix It's unfortunate there was not a response to your post. I'm not familiar with ferahame iron injection although I was told that intramuscular injections have the risk of allergic reactions. Any time my hemoglobin and ferritin stores dropped too low, I received blood transfusions. There are risks with blood infusions as well but reduced with the matching process I believe. I wish you and your daughter good fortune with the "Injectafer". Anemia really interferes with life. And I can only... [ more ]
beckysmom Well I guess no one ever had this iron infusion? My daughter's iron stores are low, 6, so I hope this goes well for her today. I am going with her later today for the iv iron and she is very nervous about it after what happened with the other iron, rightly so. Hope this goes smoothly and she starts to feel better soon. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Very sore, red raw skin around loop ileostomy Stoma.....help !
FM Former Member
Former Member Yeah Shainy, when I began using ConvaTec pouches all those years ago I experienced the filters leaking which stained many of my shirts. Since the shirt stains, I've been using ConvaTec bags/pouches without filters. ConvaTec offer a drainable pouch without a filter too. When using the stickers, it's best stick one over the filter from the inside as well as the outside. The ilex protectorant I refer to; is a paste which when applied after the Cavilon Barrier Spray protects the skin around the... [ more ]
Shainy I always wondered what the stickers were for that come with the convatec bags. After leaking from the filter and then searching online I found out a leakin filter is a common thing for convatec so I now use the stickers. What is the point of the filter then? [ more ]
Former Member I've only been using ilex since Monday and it works very well. It appears to create a very durable water and bile proof seal around the Stoma, especially when applied directly to the collar, wafer/flange or filler ring first. Thanks for the product recommendation Jan. [ more ]
See all 17 replies...
J-Pouch ForumsK-Pouch Korner
Pouchitis and k pouch
AllyKatAllyKat
JaniceM Hi...I would do anything to save my Jpouch. The KP is wonderful but is not without risks. My understanding is that if you experience pouchitis, you will continue regardless of type of pouch. And, if you are a person with chronic adhesions, that is not conducive as you'll probably build them around the pouch causing constrictions and blockages. I'd go for a consult and get all the information. Best to you! JANICE [ more ]
skn69 Alley, Although what I did was considered controversial and unorthodox at the time (not so much these days) I went onto a full juice fast firstly (3 days) and then rebuilt my digestive health 1 element at a time. Started out with chicken breast, then a green veggie, followed by another animal protein and then another veggie...finally added the fruits but stayed totally away from carbs and dairy...that lasted for quite a while until my whole system balanced out. While doing that my GP put me... [ more ]
AllyKat Thanks Sharon, just curious how you solved your pouchitis issues and how they might differ with a k? [ more ]
See all 4 replies...
J-Pouch ForumsK-Pouch Korner
Pain everyday
Cathy ACathy A
JaniceM hi...BillV is right. And, remember the pouch sits on the right, next to bladder. If that is full and the pouch, it can cause pain. I'd be sure to empty more often (both urine and KP). Especially after you eat. Are you irrigating the pouch during interbation to be sure it's all the way empty? Even mild pouchitis can cause pain. Try a gastroenterologist if the surgeon is baffled. Also, during my 30ies and 40ies I had to be on birth control pill due to extreme menses that caused so much pain in... [ more ]
vanessavy I live with chronic pain. I had celiac plexus nerve blocks that helped a great deal. [ more ]
skn69 Jeannie, You can also try Dr Cohen's office at Mount Sinai hospital in Toronto...he has an IBD and intesintal disease center that handle's these sort of things very well... You can litterally tell his secretary that Sharon from Paris has reffered you. You can email all info to him and ask for a consult. Sharon [ more ]
See all 14 replies...
J-Pouch ForumsK-Pouch Korner
Can your Kock pouch hide other problems?
jeanniejeannie
JaniceM Hi Jeanne, I'm very sorry you lost your KP. My understanding is adhesions develop for some people from day one of many types of surgery and become a bear to deal with. Surgeries to remove them make more adhesions. Don't play the what if game...just heal now. You did everything you could. There is so much ostomy support nowadays. Hopefully they have new and improved adhesives and products to make it easier. Wishing you a full quick recovery. Best, Janice [ more ]
skn69 Hi Jeannie, I am so sorry that you had to go through this and lost your pouch in the end...did you have any other pouches done and removed or was this your first one (sorry I am brain dead at the moment and remember nothing...) I never had a j pouch but went strait to K...when needing valve repairs and bowel resections etc I asked my surgeon if I was at risk of short bowel and he informed me that no, if he had to create a whole new pouch there would still be enough to go round...the pouch... [ more ]
BillV Jeannie, I am sorry to learn that your kock pouch did not work out for you. It is my understanding that Medicare will cover more than the “standard” number of pouches, but your doctor will need to provide written documentation for the number needed per month as well as document this in your medical record (should Medicare request a copy). I cannot suggest anything about your stoma itching since I have a BCIR. You should be able to get suggestions on the UOAA Discussion Board. Hope everything... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Positive sucess stories
M MAS
Marianne77 I don't have a success story for you, but just wanted to let you know you are not alone. I had my takedown two and a half weeks ago and I went 25+ times yesterday. I take an immodium before bed and am usually able to sleep at least 2-3 straight hours. Today seems to be better, but I am also being extra careful with my diet. I ate spaghetti yesterday. Worst mistake ever! I wont be eating anything tomato based for a very long time. Hang in there! [ more ]
Lesandiego Shortly after takedown, Imodium did not work. Thus the eventual diagnosis of pouchitis. After 7 days of flagyl, I had a full year of taking nothing other then one Align per day. Just recently had a second bout of pouchitis and took only 3 days of flagyl and all is back to normal... just one Align per day and my neurontin for a separate issue. [ more ]
Halo52208 No I didn't take anything else to thicken, just the cipro. Got thicker just getting rid of the pouchitis. [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
Help, very little BM and alot of gas, minor blockage??
dgtracydgtracy
Mysticobra I believe the drug relaxes everything! When I knew I was going to get a shot of it I would put a diaper on cause I knew what was going to happen. I hope all is getting better for you. [ more ]
Endi I'm sitting in a hospital bed right now for the EXACT same symptoms. I ended up having cuffitis and very severe pouchitis. [ more ]
dgtracy i ended up going to the ER. the pain was coming in waves every 5min, was still going a little and able to pass gas every now and then but it just continued for two days. once we got to the ER i got a shot of dilauded which is what they normally do to curb the pain, after about 2 hours i was able to go to the bathroom a decent amt and continued to do so for the next 35 hours! im convinced the dilauded relaxes the intestines in some way. been in for a blockage 8 or more times in the past year... [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
upper abdominal pain/painful bm's/bladder pain/Help...Anyone?
EndiEndi
Endi You guys have really helped put me at ease with all of this. Thank you all SO much! After reading your responses, I was about ready to go through with the steroids and everything. However, I feel like the medical team has actually listened to me. They said they understand my concern with prednisone. The anxiety and depression that it gives me is not what they want for me. So they gave me the option of getting ivir immunoglobulin infusions for the next few days. Much lower risk of side... [ more ]
Jan Dollar C. diff pouchitis must be treated differently than standard pouchitis (which is an inflammatory reaction to normal bacteria in the gut). The antibiotics we take for regular pouchitis can promote/cause C. diff infections, so they need to be careful about that. More and more antibiotic resistant strains are becoming prevalant. Pouchitis can also be idiopathic, meaning for no known reason. The assumption is that it might be a new type of IBD, and this is why steroids may be called for when the... [ more ]
Scott F Most pouchitis is not caused by C. diff, though in very severe cases of pouchitis C. diff is probably a larger fraction. A short course of prednisone probably won't do any harm, and might calm things down enough to enable you to consider your choices under more relaxed circumstances. Remember that the goal is (I think) to feel well and live your life fully. It may not happen by the ideal path, but it's still the goal. I hope you feel better soon! [ more ]
See all 6 replies...
J-Pouch ForumsOstomy & Skin
Surgery on Monday
K kennyboy
Holly HM Heading for surgery October 3rd. So very glad to hear you did well. Thanks for the encouraging words. [ more ]
Clicky Kenny, thank you for writing your story - I'm so pleased you are home now. I hope everything continues to heal well. [ more ]
Lambiepie Kenny, great to hear that all went well. I'm in the "anticipation of surgery" stage and getting nervous, so to hear from you is reassuring. Continue to heal well. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
takedown troubles
Marianne77Marianne77
mgmt10 Marianne, You can order the Calmoseptine on Amazon.com if you are nervous about leaving the house. It arrives pretty quickly. And if you are an amazon prime member you get free 2 day shipping. [ more ]
MicheladelfinaTX It does get better, and it's so frustrating to hear that it will take time, but it does. I had my first takedown in June of 2007 and was disappointed for months, thinking I had made the wrong decision. Due to fistulas and other complications I had to have another temporary ileo placed and had my second takedown in June 2008; even now I notice improvements year to year. Keep in mind, the human body wasn't designed to work this way, so it will take your system time to adapt. Over time, your... [ more ]
Marianne77 Thanks for your encouragement. Life was getting pretty difficult with UC, and missing 25+ days of work this past year was the main reason for the surgery. I am a kindergarten teacher and I was getting to the point where I would call in sick at least once a week and spend most of my morning in the bathroom. I haven't purchased a bidet yet, but I have a squirt bottle I have been using instead of wiping. I also take 3 sitz baths a day in Epson salt. I haven't been able to get out to get some of... [ more ]
See all 8 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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