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J-Pouch ForumsOstomy & Skin
skin breakdown
GinLynGinLyn
GinLyn Thanks, all. It is slowly getting better; yesterday was the first day I changed the appliance without actual pain, so that's great! Spoke with the surgeon yesterday as well and I've been bumped up on the priority list for the op; will find out date this coming week. So that's good news. Gin [ more ]
PoucherInTO I also agree with the other posters, don't worry about getting all of your Eakin residue off. I get most of it off but there is always some there when I go to apply my new wafer. Those barrier rings are designed to be very soothing and healing for the skin, so it's better to leave bits of it on rather than rub your skin to get it off. I would NOT use any oils or dissolvants, other than wipes made for the peristomal area, as they can further irritate the area and/or make it very difficult to... [ more ]
chiromancer I agree with Jill. I have found it not really required to remove all the residue which for me is primarily from a Eakins seal. I get some off during a shower and most of the rest off using a dry wash cloth after I shower. There is certainly some residue left and it doesnt seem to make much if any difference. [ more ]
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J-Pouch ForumsGeneral Discussion
having a J-Pouch to replace Ileostomy
F Francine
Pluot You should have an anal manometry test first and foremost to test the strength of the sphincters -- after nine years there is a strong possibility that adequate sphincter strength is not there anymore and a j-pouch would be a poor experience for you. I would not proceed without one... in fact, in your shoes I wouldn't even consider whether I want the pouch or not until getting a positive result on the test. [ more ]
Scott F A J-pouch isn't a foolish choice, but it also isn't "free." Most people with J-pouches are happy with them, but they can be more challenging to manage than an ostomy, and the road back from the surgery can be difficult. The advantages of a J-pouch are aesthetic (nothing poop-related to see), psychological (normal body image), and functional (no bag to deal with during various activities, or preventing some of those activities). Some folks find an ostomy to be a barrier to sexual intimacy,... [ more ]
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J-Pouch ForumsPouchitis
Ok recent scope but awful pain
J jeane
TE Marie Hopefully you are taking a short course of prednisone. Did Dr. Shen evaluate you for IPS? I'm sure he did but the description of you non inflamed pouch sounds like mine and I have IPS. I was diagnosed with this by Dr. Loftus at Mayo. Dr. Shen has written several technical papers including sections about IPS. The descriptions of your pouch sure sound like mine. I'm not talking about any of the rest of it as your cuff problems have not sounded like my cuffitis. I think you have tried anucort... [ more ]
lholdem I don't have much to add other than say I've taken both entecort and prednisone - I HATE prednisone as it gives me the weirdest side effects, whereas I've experienced also none with entecort. I hope that's encouraging to you! [ more ]
jeane Interesting. I have bad a few MRI's that have been pretty unremarkable, but that's not to say I could still be experiencing some of the things you have mentioned. So far with about a week or more on sugar free, gluton free diet and no starches at all, I am feeling better. Still think I may need that entocort and just waiting on stool results before bellying up and stsrting it. I hated prednisone and really hope the side effects of this are less as has been indicated. I hope I don't have to... [ more ]
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J-Pouch ForumsGeneral Discussion
Letter about proctocolectomy
ManchesterManchester
Jan Dollar I would imagine that the stoma nurse appointment is so you can discuss all your concerns, what the actual risk ratio is, and what treatments are available if you do have problems. I don't believe it would be to just give bad news. Often, knowing what is possible, probable, and certain helps greatly in reducing anxiety. It is too easy to lump the rare complications in with the common ones, and that can just make you lose sleep needlessly. Jan [ more ]
wooly-bobs Which hospital is Mr Carlson's clinic held? I had my reversal done last week at MRI under Mr Kushwaha and Prof Hill. [ more ]
Manchester Thanks everyone. Jan, we are trying to keep positive but I am still stressing about a few things. I have been referred to the stoma nurse to discuss sexual dysfunction but the appointment is in 3 months. I just don't know what this means. Is it a possibility of that is it and no action? Viagra? Thanks [ more ]
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J-Pouch ForumsPouchitis
Cant seem to get rid of my pouchitis
FG Fernando Gonzalez
Rebe0505 seriously you have gotten good advise here to make the elimination of carbs more definitive get a hold of ..breaking the vicious cycle..elaine gottshall..its detailed on what carbs you can or cannot eat and just about everything else..its better having a clear guide..if you follow it you can order some treats from..digestive wellness.com to get you over the lac of carbs..you need to start somewhere with clear guidance ..this is a good start..if you have some success which should be clear in... [ more ]
Fernando Gonzalez Thank you for your recommendations. I have just started taking endocort again. It's helping but there is still a ways to go. I have tried to stop carb intake as well. It's not easy but I am trying. I have never tried antidepressants and don't think I need them right now but I am open to anything that can help. [ more ]
Jilly Ah yes, living life with constant pouchitis. I did that for 12 years, thinking that it was normal. Suckah! I went on the following and have been ssssllllooowwwwlllyyy weaning off of things still. On 9/26/13, started on: 500 mg Cipro per day 250 Flagyl 3/week Entocort 9 mg, 3x/week Florastor probiotic Trader joes multi probiotic Cymbalta 40 mg per day Celexa 40 mg per day Today: Cipro same Flagyl 250, 2/week Entocort 3 mg, once/week Probiotics are the same Antidepressants are the same This... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
To those who had c sections....
K ksmarisa
ksr My colorectal surgeon told me he had to be at my c-section. He put all my insides back together after the OB finished her job. I think you should just check with your colorectal surgeon and have good communication with your OB. [ more ]
Daisy18 My OB did not have experience with women with pouches although she did have experience with other diversions. I don't think it's important but I do think it's beneficial to have an OB who at least is familiar with what a j-pouch is. [ more ]
LHetti I don't think it's necessary to find an OB who has done a c-section on a j-poucher. The j-pouch is tucked down inside your pelvis and the uterus and baby are all on top anyway. I had a lot of adhesions from all my previous abdominal surgeries (I've had 2 c-sections also), so the OB had to do some extra work to get out my second! My colo-rectal surgeon was not there and wasn't necessary (he said). Best wishes! A baby is such a blessing! Laura [ more ]
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J-Pouch ForumsGeneral Discussion
sacrum and leg pain...?
lovedby2lovedby2
rachelraven I think you need an MRI to rule in/out arthritis. A CT isn't sensitive enough. [ more ]
n/a I had horrible lower back/butt-cheek/leg pain as well - for years, mostly prior to the colectomy. I had to use a crutch to get around - when I could get out of bed, that is. I understand your pain, it absolutely brought tears to my eyes. I saw a rheumatologist, the first one told me it was ankylosing spondylitis; the second wondered why the first told me that, as he saw it as sacroiliitis. Whatever it was, I took waaaay too much ibuprofen and I believe it did a number on my intestines/pouch,... [ more ]
lovedby2 My Dr has always stayed away from those for just that reason...the side effects! He said the same, your fighting for your life just to end up with a another life threatening aliment. [ more ]
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J-Pouch ForumsMen's Health
How long till a boner?
BD Blake D.
Dot2 Agree about talking to Doctor. Surgeon said to see urologist. Did not have problems after jpouch 20 years ago but recently has complete colon and tail bone removal I knew that cancer is more prevalent when UC involved. Never told about these side conditions. But lucky they saved rectum 20 years ago and NO regrets as there had been a 95% push to remove rectum then. Finding a good urologist is now the MAJOR problem. Live in Maryland [ more ]
badguts Don't worry your little buddy will not be kept down for long. [ more ]
Roland333 This isn't the case always for recovery. It depends on the operation, the age of the Jpouch recepient, and how well it was before the operation. I have had my J pouch since 2008, from having UC. It has been a traumatic event not being able to get a boner at a moments notice as before. Whether it is nerve damage or not, I am not sure, but what I do know is that with medical help like a pill, and with testosterone supplements, I am working fine now. However, being in my late 40's, other... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Extreme cramping and pain
T Teddybearlady
TE Marie Good! [ more ]
Teddybearlady I did some extra fluids. Soaking warm hot baths and I am glad to report...al better! [ more ]
Roni* Sounds like you've got some blockages going on. You can develop adhesions anytime after having abdominal surgery. Maybe that's what is going on with you. I started out with just one originally and after 10 years I have three areas I have problems in. I was told by my GI if you are vomiting because of them you need to go to the hospital. Hoping this has cleared up since you posted this, but if not keep in touch and let us know how it's worked out. -Roni* [ more ]
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J-Pouch ForumsHelp! Need advice now!
TMI?? explosive gas/bm
T Teddybearlady
lablover There is no worries about 'TMI' on this forum... [ more ]
Teddybearlady Thanks guys! It has been better the last two days. Still learning normal I guess! [ more ]
Ikh Hey CeeeeCeeee I also feel the same, but there's a difference, a bit of gas at the end could be good, what Teddybearlady described is a change in her habits, and although she shouldn't worry too much I am pretty sure that an error one must avoid is to retain this kind of bm as I did, and both the times it led to pouchitis or sibo (treated the same with antibiotics), both the times it started with a similar change in my habits. If it's too gassy I think bad bacterias are overgrowing, if it's... [ more ]
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J-Pouch ForumsHelp! Need advice now!
mucus discharge with loop ileo
Paul HPaul H
rachelraven All bowels make mucus. That's just normal. It mixes with stool, and we rarely think about it/see it. My surgeon used the slacking off of the mucus to help determine my takedown. It was 4 months and 5 days post my colectomy/j pouch/loop ileostomy that I had my bowels connected and rewired for sound. [ more ]
CeeeeCeeee When this happened to me my surgeon suggested I use the opportunity to do Kegels in order to strengthen my anal sphincter(s). Yeah, right! I was so disheartened because that mucus is the most slippery stuff I've ever "seen" and I felt like an utter failure at clinching hard enough to hold it in. Kegels, my "_ss". Fortunately, once I had my takedown I realized how helpful this mucus is to help pass the stool out of us. Without it, we'd feel "stuck". Wish they had told me!!!!! You are... [ more ]
mgmt10 It's definitely normal. I had this too but it usually only came out if I sat on the toilet and pushed it out. But there were a few time that it did squeak out on its own. I think because it's so slippery. Not much you can do about it except maybe wear a pad or disposable underwear to bed. [ more ]
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J-Pouch ForumsGeneral Discussion
Shea Medical-Digestive Solutions in AZ very helpful info for us
C clouseau
Jan Dollar OK, I guess this is going nowhere. Sorry clouseau, if you have not gotten the answers you needed, but I need to close this thread. Let us know how things go if you choose to treat at Shea Medical. Jan [ more ]
Scott F Unfortunately their minions appear to have found us. It will be very hard to have a rational discussion on this topic without the Stepford Wives piping up. There are no huge secrets in medicine. If a treatment is marketed to appeal to the desperate, and priced like a miracle cure, then it's a sham until proven otherwise. This is an old business. [ more ]
Sandy1234 You are the one guiding it off topic in the first place! [ more ]
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J-Pouch ForumsHelp! Need advice now!
question regarding ips vs. sibo
R Rebe0505
Jan Dollar Yes. I do believe that since there are a variety of causes for similar symptoms, there will be inconsistencies in diagnosis accuracy. In many cases, there probably is an assumption of pouchitis before there is a firm diagnosis. Especially if a benefit is seen with antibiotics, further exploration may not be warranted. I do know that antibiotics are not recommended for IBS, even though it is known that there is often an imbalance of the micro flora/fauna. A lot of the research and marketing... [ more ]
Rebe0505 thank you ladies for your dialogue on ips..what is clear is one can have more than one thing going on and many of symptoms are similar in ips,pouchitis,bacteria overgrowth and so on..and moreover even with all else being equal we patients are all different in what works or does not.. and furthermore with our various intestinal issues we have no choice but to be our own best advocates ..its not simply go to doctor,take this and bam under control kind of thing.. [ more ]
TE Marie Jan, The article says IPS responding to antibiotics responding "MAY be explained" because some patients have small bacterial overgrowth. It doesn't say it is ALWAYS explained because of it. It is important for me to clarify this as I've gone through the testing. I eat the suggested low fat, low carb, no caffeine, no alcohol, avoidance of most dairy as I use almond milk. I do eat cheese and Greek yogurt but they are lower in lactose. My protein powder is plant based with no lactose. I have... [ more ]
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J-Pouch ForumsGeneral Discussion
Pending Ostomy Reversal
Kathy AKathy A
Kathy A Hello Army Wife: Thank you for your response. I hope I have a story like yours to tell in future. You are exactly where I hope to be in a few months. I had the dye (leak) test yesterday and everything looked good, according to the Radiologist. I was concerned at first because they took so many pictures but she said it was because she wanted to make sure that she didn't miss anything regardless of how small. I was glad that she was so thorough. They inserted over half liter of fluid... [ more ]
Army wife Hello Kathy, I had my take down surgery August 2013. I was nervous because I had become fond of my ostomy because it allowed the freedom that is hard to enjoy with UC. The recovery isn't a breeze but much easier thn the first surgery. You will quickly learn your pouch and what you can handle. It will take some time. I am down to about 5 trips to the toilet a day with excellent control. I even sleep thru the night. I try not to eat past 7 pm. You will figure put what is best for you. I rarely... [ more ]
Kathy A Thank you both for your info and suggestions. It is very helpful. I am looking forward to getting this done and I am prepared for discomfort and inconveniences in the beginning. I just hope that I am one of the lucky ones and it doesn't take to long to get to a happier place. I have been exercising ye ole sphincter right straight along. Hopefully my efforts will not be in vain. As for the butt burn, although I am not looking forward to it, I figure it can be managed and treated easier than... [ more ]
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J-Pouch ForumsGeneral Discussion
Doing abs and stomas
skn69skn69
Jan Dollar Yes, mesh is stronger than tissue, but that can mean that what the mesh is attached to is under increased strain. So, best not to add to that strain. Remember that now that you are working, you are out running around more, so you are getting extra exercise that way. Stretches should be OK, as long as they are slow and do not cause pain. You should never stretch beyond the pain. Jan [ more ]
skn69 I'm trying...most of my workout consists of stair climbing (real stairs, not stairmaster or other machines)... have worked up to 1000steps or more a workout (around 40-50xs 20 stairs) plus arms and the swissball but on Sunday I got a pain in the lower abs...around the stoma...more just under the surface than deep inside. Reminicient of my hernia pain and that stopped me cold. Less so over the last 2 days...been taking it easy...but still there. Terrified that I have done something to myself... [ more ]
Jan Dollar You can do core exercises and cardio without doing exercises that strain the abs. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
How long does it usually take your dr. to respond?
lholdemlholdem
lholdem I put in another call yesterday and had my phone on me all day except for 15 minutes to do some laundry... and of course my dr. called me during that window. Ah well Murphy's law, eh? Apparently my dr. did have the flu the last couple days but he apologized that I didn't at least hear from his PA. He told me when he's available today so he can get paged when I call back. Since this is uncharacteristic for my dr., I assume it's a failure of the hospital system. Still frustrating though... [ more ]
GinLyn If your OB is concerned, have him/her call; might get results, info, and treatment faster that way. Gin [ more ]
ccanepa456 My doctor or nurse practitioner usually get back to me within a day or even that same day sometimes! It could also do with the fact that I am I'm pediatrics though, I sometimes believe! [ more ]
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J-Pouch ForumsGeneral Discussion
Is this normal?
BebeksporBebekspor
Bebekspor Most of my urgency is related to gas too, it's really hard to hold it. Everything gets worse as the day goes on. I do feel as though every week is a little better, but if still have these frustrations. My surgeon hasn't mentioned testing for pouchitis or cuffitis. I'm supposed to have my 6 month scope in July, but he wants to do it sooner if I don't improve soon. Some days are pretty good, some days aren't. I can't seem to tie it to anything I eat. Katie [ more ]
GinLyn I had all exactly the same symptoms for about 6 months after takedown. They slowly diminished, so don't lose hope; it really does just take some people longer. Having said this, it wouldn't hurt to be checked out for pouchitis (etc.) as others have suggested. About time for a post-op scope anyway, I would think. Gin [ more ]
Amstobar Hi, I'm also at three months post take down, and sometimes have the feelings you describe. I go 4-8 times a day, and sometimes a little more if I forget my Citrucel or eat something my body disagrees with. The more bulking foods I eat, the better I do, since the looser the stool, the more the urgency. If I take it too far though, I can get too firm and aggravate hemherroids I've developed. I still have some pain, but this is mostly related to hemherroids. I do have urgency sometimes, but... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Question
FrancesFrances
Jan Dollar If he suspects pouchitIs and has seen you in the past, he probably would be willing to give you an Rx in advance, and see you in person if it was not effective. Jan [ more ]
Frances Thank you for responding. If it does not get better in a couple of days i will e mail my doctor at Cleveland clinic. Dr Shen is my doctor there and he is great if i have a question and i e mail him he will answer me same day. If he thinks its pouchitus i will make the trip up to see him. My husband has to drive me but i am lucky to have a doctor about an hour and a half away. Enjoy your evening Frances [ more ]
Jan Dollar Well, yes and no. You cannot underestimate the effect stress can have. That said, I would not say that stress would definitely cause one specific symptom over another. Mostly, it would be just a worsening of general symptoms you may have. If you have had a sudden change with a new symptom, it is probably time for a phone call to the doctor. If it is stress induced, maybe treatment focused on the stress will help alleviate it. But, you could also have another bout of pouchitis too. You can't... [ more ]
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J-Pouch ForumsGeneral Discussion
Amytriptilene?
AJ Auntie JoJo
Auntie JoJo I had been on prozac, effexor and welbutrin in the past and all of them gave me terrible diarrhea. This was before my pouch but I don't want to take that chance. [ more ]
Pouchomarx this never worked for me... [ more ]
TE Marie AuntieJoJo, How can you tell the other antidepressants tear up your pouch? I'm not on a Tricyclic one but am meeting with a Psych to analyze my medications next week. We will be discussing if I should change what I am on and if I should keep taking what I am or change to something else. I need the medication for depression and anxiety but I also have IPS. Thank you for bringing this up [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
totally perplexed!!!??
S Sonja6
Sonja6 Thanks, Jan. I did go to my primary. I requested a blood test and they said urine would be fine. I wasnt to thrilled with that response. But there supposed to be the doctors, right? They second urine test came back negative and they sent me to get a x-ray. They gold me I'm probably just constipated!!! I couldnt believe what I was hearing. I know some people with jpouches get constipated. But this is a problem I have never had! Even when heavily addicted to opiates! Which is why I loved them... [ more ]
Jan Dollar Get the blood test or do another urine test. Maybe you just did the first one too soon. Why waste time when you could KNOW for sure? I had pregnancy symptoms before positive testing. Early spotting is fairly normal. Occurs with inplantation. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Vitmain D deficiency with IBD associated with increased cancer risk
Jan DollarJan Dollar
Former Member ❤️
Pluot Thanks Jan [ more ]
Jan Dollar Here is the link to the full text: http://www.cghjournal.org/arti...(13)01644-3/fulltext Basically, once your vitamin D level is within normal limits, the cancer risk is normal. There was no indication of any further benefit beyond that. I've read other articles that indicated benefits of maintaining levels closer to the middle or upper limits of the normal range, but they weren't cancer related. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouch scope and now pain
L lhh65
goldie I just had a scope last week which set me off into a horrible flare...no pain in the pouch, although it did show ulcers...but my abdomen had great pain...it took me the whole week to recover, still recovering...I have a stricture at the anastomoses and the scope pushing thru irritated things...hope you feel better soon... [ more ]
jeane I just recently had a scope with biopsies and I had severe cramping in my abdomen the entire day after and then some bleeding a day or two after that. I would call your doctor also, but I am not certain this is entirely unusual after a scope with biopsies. I have had many scopes with biopsies over the last two years, however my last one I had the most pain with. [ more ]
Chuckus Call your Doctor pronto. You might have some discomfort, etc... but not like that. [ more ]
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J-Pouch ForumsGeneral Discussion
Stoma wound packed not stabled? Pain!
S shnwilkins
shnwilkins Well I just found out that my surgeon reopened my vertical incision about an inch and a half because he thought it was infected. So now I have two open wounds, with the stoma wound being about twice as small as the other. But my jpouch seems to be functioning very well already so thats a plus. [ more ]
techwrench Mine was also cleanly sutured closed,and healed well.The pain in the stoma area, was similar to the muscle pain when you do too many sit ups,and it hurts the next day. [ more ]
rachelraven Mine was closed and healed just fine. [ more ]
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J-Pouch ForumsGeneral Discussion
loop ileostomy & VSL3
Paul HPaul H
TE Marie Your Imodium taken in the morning may not be working until the afternoon so if I were you I'd still take them in the morning. I still take Loperamide (Imodium) 4 times a day. Sorry if I wasn't clear in my prior post. 1) There is a possibility your Imodium could be floating through your stoma to your bag and 2) IMO the prescription form gets in my system or dissolves sooner. I've found there is a lag time in how it works and I need to have a steady schedule of how I take it. I'm glad you have... [ more ]
Paul H Thanks very much. I'll give the probiotics a miss until after takedown, I thought as much. The Lopermide seems to help later in the day, first thing in the morning it must be floating out. Not tried marshmallows but Jelly Out of interest my surgeon in Barcelona is an American lady with tons of experience with Pouches, she makes me feel very positive unlike the uncommunicative Spanish ones. Paul [ more ]
TE Marie Welcome to the site! I had dehydration and overflowing bags with my loop ileo too. I feel for you. If I were you I'd cut out alcohol as it is very dehydrating. Also I don't think I've heard of anyone taking probiotics while having an ostomy. Some that take them after getting their j-pouches say that probiotics give them gas or runny BMs (I forget which or both sorry.) My doctor said to take a maximum of 8 Imodium per day. I don't think taking anymore helps. Have you tried marshmallows? I... [ more ]
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J-Pouch ForumsGeneral Discussion
Blood In Stool
S SimpleX
Little Ski I had some of the same problems you have when i had a polyp in my pouch that started to bleed my doc went in and snipped it during a scope and clipped it then carterized it end off story . I also get occasional blood in the toilet when i get pouchitis which turns out happens when i take NSAIDS like ibuprofen or naproxen . [ more ]
SimpleX Thank you Jan. The Doc ordered a round of Cipro on the phone after hearing the symptoms and told me to check in my mid-week, sooner if problems arise. [ more ]
Jan Dollar No, I don't think it is Crohn's. There's a saying that states, "if you hear hoofbeats, you should think horses, not zebras." This means that cuffitis and pouchitis are by far the most likely cause of bleeding with a j-pouch (horses) not Crohn's (zebras). Ulcers are fairly common with pouchitis. I also wanted to point out that not everybody with pouchitis has the same symptoms, or even have symptoms. You can have mild pouchitis with severe symptoms or severe pouchitis with no symptoms. So,... [ more ]
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J-Pouch ForumsGeneral Discussion
scope today for takedown
U UjohnjC
UjohnjC thanks pouch makes me feel bit better i believe i am ready for takedown [ more ]
Pouch4Wf The stricture is probAbly not a big deal. Most people stricture with a diverting ileostomy. When they go in to do the takedown they will dilate the stricture and you should be good. The defect is also probably normal. The standard staple line can cause indentions that can appear to be little defects. Doesn't sound like anything more serious. Totally just my non-medically trained opinion. Dan [ more ]
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J-Pouch ForumsGeneral Discussion
minimize chances of c-diff
pouchingtonpouchington
Rebe0505 vannasamy interesting i know you are on pale diet as i am on scd..do you find consistency in 14 days antibiotic and one month off..or is this new regiment..and have you been 100 per cent following pale? i ask because i was off antibiotics 4 months..three being really pretty good..since than some ups and downs and wondering if it just might be necessary to take antibiotic on and off as required by how i am doing..i am off antibiotics day two after 7 days on because i was away on important... [ more ]
TE Marie I take it twice a day and the strength is 5 billion. The instructions said to take 1-2 per day or as directed by health professional so I take 2. I didn't run this by any of my doctors, just started taking it. I probably should have asked but my GI and surgeon at that time weren't pro probiotics etc. I have my Internist prescribing my VSL#3DS and the s.boulardii is OTC. My Internist advocates taking probiotics, like Align, after antibiotics to her IBD patients. [ more ]
Rebe0505 marie how many of the ssboulardi do you take..one or two times a day.. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
2nd degree vaginal tear help
S sally85
skn69 Sally, Only two suggestions here...can they test the nerves to see exactly how damaged they are? There are very specific tests and they should be able to map the sphincter. Next, as always, if you cannot have a jpouch and do not wish to keep the ileo then there is the possiblity in England (at St Marks as a matter of fact plus a couple other places) to have a k pouch done. It is not an easy surgery, you need a really experienced surgeon to do it and you must have a good dialogue with him. [ more ]
sally85 Thanks Jan i appreciate all the advice [ more ]
Jan Dollar Well, they say there is sphincter damage with every pregnancy brought to term, regardless of the type of delivery (obviously, vaginal delivery is more damaging, but the pregnancy itself puts strain on those structures). In a general sense, any nerve trauma can take up to a year for the body to repair itself. After that, it is considered irreversible. I have no idea what your specific damage state was before your last pregnancy or after it. I was speaking in general terms, not specifically to... [ more ]
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J-Pouch ForumsGeneral Discussion
scope
U UjohnjC
techwrench I didn't know they scoped before the take down.I just assumed everyone had the contrast x ray,like I did. Interesting.To calm your nerves,just tell yourself,you made it through the big surgery,the tough part,the take down will be much easier.I thought it was a walk in the park,compared to the first operation. Best wishes. [ more ]
CeeeeCeeee Good luck on the scope and think positive thoughts! Most of us fly right through the scope and onto takedown! [ more ]
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J-Pouch ForumsGeneral Discussion
old timer with new problem
S sarahkay
sarahkay Thanks a million Jan. Amazing that the relevant thread was just yesterday (I'd scanned the forums but missed that one). Yeah, I am thinking it is my age (55) and my older pouch both being factors. Now I have to work out ways to get this pouch happy. And thanks to all the others that make this such a top notch site. I'd be so lost without all of you. Sarah [ more ]
Jan Dollar You might find some insight in this thread: http://j-pouch.org/eve/forums/...1071921/m/3087013076 Jan [ more ]
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J-Pouch ForumsGeneral Discussion
liquid stool, nasea and vomiting.
O Onwisconsin
Ikh How are you now Onwinsconsin? [ more ]
clz81 i was leaning toward obstruction too, but with the diarrhea frequency you just listed at every half hour, that sounds more like a virus or food poisoning. the only time i ever had frequency like that was when i had a stomach bug. [ more ]
Onwisconsin Update: there was no pain, liquid stool was coming out very fast, like one every half hour, then it.slowed down. I've been dizzy most of the day, experienced some cramping in the arms and legs. I was really worried I would have to go in to the hospital for an IV, costs me 250 copay to visit the ER, no urgent care open on weekends which is also a 150 dollar copay, money I just don't have. I drank a gallon of Gatorade and a half gallon of water today to stay hydrated. I had bisque soups just... [ more ]
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J-Pouch ForumsPouchitis
rebecca new update
R Rebe0505
Rebe0505 yoghurt maker bought from lucks kitchen mail order as well as yoghurt starter,almond flour,and other products..tel number..18884842126 lucy can offer assistance with some questions you have about dcd diet as well.. [ more ]
Rebe0505 alleycat..i would go back to yoghurt starter you used that seemed to be good..i use the one that i get from lucys kitchen(she has store of scd ..)i get my yoghurt maker as well from her..not only is she great to get above things from as well as almond flour but she is great as advisor having been around since elaine gottshell did the book and knew her personally and successfully used scd for her colitis..as a matter of fact she did tell me to watch the fruit..she does not eat them because... [ more ]
Rebe0505 clouseau hi rebecca here yes i am very interested in your findings and would like info.. moreover,i am inclind to perhaps agree that the fruit might be a problem for us..even in dcd approved many folks on dcd cannot eat them(sigh!)thinking it is issue with me as well for control..just hating to admit it..i am even thinking the honey in some receipes from digestive wellness might be a problem because of honey..have had some bumps along the way as of late and have had to add my antibiotic back... [ more ]
See all 8 replies...
J-Pouch ForumsK-Pouch Korner
Friend went from BCIR to Kpouch
vanessavyvanessavy
vanessavy I have Military insurance, nothing fancy. It was in network. Palms of Pasedena takes many health insurance plans. My one friend just got on the affordable health care and nobody at CC takes is Blue Cross plan he got on with it. So, depends on your health insurance and if Palms takes it or the other BCIR surgeon in LA. [ more ]
Jan Dollar Wouldn't it depend on whether your doctors and facilities are in network? The procedure itself is only part of the equation. Many plans do not allow out of network care when there is similar and adequate care in network. Most of us could not afford the the out of network costs. Jan [ more ]
vanessavy BCIR is covered by health insurance. I am on Govt insurance and got it done. The bill was 96k and I paid 300 deductible, the kpouch can be 100k at CC. [ more ]
See all 20 replies...
J-Pouch ForumsGeneral Discussion
Taking acid reducers
R raven68red
CeeeeCeeee I just started taking the "O" medication for reflux. Last month I thought I was having a heart attack.....elephant sitting on my chest symptom. My cardiologist checked me and said it is reflux. Actually, I thought reflux involved bringing up digestive fluid, etc. after eating. Not my symptoms. Just terrible pressure in the middle of my chest. Well, since taking the "O" med, I still have the reflux symptom described above but not to the extent I did a few weeks ago. I still need to take Tums,... [ more ]
cassiecass Evening Have you seen a gastro md? Best person to ask.,Have you ever been endoscoped? Have they checked your vit b12 levels. I have reflux issues when my Thyroid levels go haywire. Cassiecass [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Paleo Diet and Cholesterol
suebearsuebear
Jan Dollar Not too surprising Sue. I suppose this falls into the category of "no free lunch!" But seriously, if I had to choose between good function on antibiotics and good function on a statin (to treat the high cholesterol), I'd take the statin over the antibiotics. I guess you have to pick your poison... Jan [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Mysterious pain, any thoughts?
EricEric
rachelraven Shingles pain IS nerve pain, so I suppose it could be nerve pain brought on by them, or just weird nerve pain itself. No skin issues at all? No redness or anything? [ more ]
Pluot I'll second everything that Poucher in TO said... I had a very similar feeling after my first surgery, the doctors suspected shingles but it went away on its own so I guess it was nerves after all. I was offered gabapentin to treat the nerve pain but it resolved without it. If yours continues and it isn't shingles, maybe you could talk to your doctor about trying that. [ more ]
PoucherInTO Hi Eric There were two times that I experienced the same pain as you are describing. Once was after my jpouch removal and I kept thinking I had a leak under my wafer - but there never was one. We figured it was the nerves being stimulated/regenerated . The other time was also nerve related - I had a radiating pain/itch/tenderness for about a week, and then wouldn't you know it, shingles appeared (an ID MD lanced once of the shingles and looked at it under the microscope to confirm the... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Loop vs End Ileostomy
P Pouch4Wf
Pluot Kathy got the main reason, it's higher up in the intestine and therefore your output is digested less and less liquid is absorbed from it. Therefore you have more output, it is more liquidy/corrosive to the skin, and it is much harder to stay hydrated and keep from losing weight. The distal end of the loop ileostomy sometimes puts out mucus, and this can cause leaks because people who are used to the end ileo often place their wafer OVER the distal opening, so the mucus comes out under the... [ more ]
Jan Dollar Loop ileostomies tend to lay flatter or in an uneven way and are more likely to recess, so getting a good seal can often be much more difficult. It is sort of a structural defect caused by. The intestine "tugging" from two directions. Jan [ more ]
Kathy A Hi Pouch4wf: I am not sure that I really know the answer to your question but I can offer some thoughts. I had an end ileostomy which, as you say, was rather non-problematic. Following surgery this past February to create my J-pouch in preparation for a reversal, I now have a loop ileostomy which is very problematic. My surgeon warned me that it could have a very high output (which it certainly does) because it is closer to the stomach and food waste has less travelling distance. As a result... [ more ]
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
HELP!!!
grandma64grandma64
vanessavy I get itching in my valve and drives me nuts. I slap the crap out of the area and works. [ more ]
grandma64 So I found out the reason for my internal abdominal itching, I feel really silly about telling you guys this, it might help someone else out, here goes! Well, I take a few prescribed medications, one being Gabapentin, well I started getting real nauseated on Wednesday afternoon so I didn't take any of my meds, by evening I was so sick, throwing up, head pounding, bad back pain, tired and fever! All day Thursday & night, then Friday morning I started having bladder spasms, by noon I knew... [ more ]
skn69 Grandma, Did you have any sort of hernia repair with mesh? If so, then that could be the cause of it...a form of rejection of the mesh...the other thought although it is very, very rare is necrosis between the pouch and the abdominal wall...it could cause all sorts of symptoms. Sharon [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Butt burn only when lying down?
C clouwho2
CeeeeCeeee When I get butt burn, severe or mild, I know it will be gone when the food which caused it finishes leaving my body. I never know which food/drink that is but just knowing the end of my "misery" is in sight is enough for me to withstand it. I do use a barrier cream during those episodes if I need to be out and about. otherwise, I just "grin" and bare it! (Kidding about the "grin" part!) Good luck to finding what works for you! [ more ]
Mema 1 I get the same thing too. It usually wakes me up. Does anyone know what it is and why it burns so much as it's coming down? [ more ]
lovedby2 I think I understand what you are saying. It's not butt burn on the outer skin it's the feeling of burning on the inside of anal canal. And as I Kay there it feels like the Stool goes into the canal and sits there burning and every time I try to use the restroom it doesn't all come out and it hurts!! I experience this often and can't bare it, just like last night. I'm in so much pain,hot baths etc...don't help. [ more ]
See all 4 replies...
J-Pouch ForumsPouchitis
Flagl Dosage
F Fazz
pjexpress Several times over the past few years with flagyl at 500mg for 7 days. The last few months trying to stay on top of possible chronic pouchitis and again flagyl at 500mg for 7 days then rotating to cipro for 7 days. Cipro no longer works and Doc has prescribed Flagyl again but now is 14 days at 250mg. I think sometimes they will try different dosages to try and find what works best. [ more ]
clz81 As Jan said, I would start with the 250mg x 3 times daily. You can always increase to the 500mg after a couple days if it isn't sufficient. 10 day course if probably good for your first time. [ more ]
Ikh 500mg 3xday [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Employer saying my hair is "too extreme"
CatajaCataja
TE Marie I'm sure whatever color it is you are still beautiful. Sorry you had to do it. If they still don't like it I'm afraid they are out of luck as your hair can only take so much torture before falling out! Good thing I don't know their name as I'd be boycotting the establishment. Not that I go there but you know what I mean, I might know people who know people...... I'm glad this has not affected your income. [ more ]
Cataja I used a toner on it and now it is just a light red with butterscotch highlights...if the highlights were any darker, they'd be lowlights lol. I'm done...they can take it or leave it. There is no way it can be on my job performance...I am still in first place at the store and in the district, I lost my first place ranking in the region when I was hospitalized for 5 days. [ more ]
GinLyn Sooo. I was standing in line here (the Netherlands) at the grocery store behind a woman in her 60's and thinking to myself how the fashion has gone more purple this year when the irony hit me and I burst out laughing. Garnered a few looks... Let me explain: the fashion here for women over about 50/55 is to get their hair cut short or in a buzz-mohawk and dye it some random shade of red or orange. And I'm talking from highway worker orange to fushia to fire engine red and everything in... [ more ]
See all 32 replies...
J-Pouch ForumsGeneral Discussion
severe joint pain
L loralie78
Jan Dollar I have IBD related arthritis and was able to tolerate ibuprofen at high doses for years, but eventually the party was over. I had to stop it due to liver inflammation and pouchitis. Both ailments turned around, but now I only take NSAIDs for two week intervals when I am having a severe flare. For maintenance I take Azulfidine and Simponi for the inflammation. For the residual pain i take Norco and Robaxin (muscle relaxer). Hopefully, once your rectum is removed, your arthritis symptoms will... [ more ]
skn69 Depending on what your underlying condition is/was some people can take NSAIDs (anti-inflamatories) and others can't)...I take 1200mg/day and have been for quite a while but when I have adverse reactions (burning, heartburn, mild bleeding...) I take a course omopral to protect my digestive tract... Check with your doctor first before starting. Sharon [ more ]
loralie78 Okay, thanks so much for your response. I will continue on with the Tylenol. I do not have the pouch yet just the ileostomy for now. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Thiamine (B1) and Riboflavin (B2) deficiencies
RJG-RossRJG-Ross
Jan Dollar Thiamine deficiency is common with malnutrition, so it makes sense that if you have chronic digestive problems, it will be a result. Trouble is, it is a real cause of neurologic damage, and peripheral neuropathy specifically. Supplementation turns it around quickly, but peripheral neuropathy can take months to repair. Hope you get things back on track soon. Jan [ more ]
mgmt10 I'm not sure if I am deficient in those but I am always iron deficient. I'll have to inquire about the other vitamins. My dr. is always so focused on my iron issues he never told me if I had other things going on too. [ more ]
See all 2 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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