Rowans momGave her two shots (4oz) of grape juice didn't really do anything. I am frustrated completely about the bloat and gas. I am worried she will pop. [ more ]
Rowans momPopsicles was the only thing I could get her to eat while on a liquid diet. Texting hubby for some now. [ more ]
liz11Popsicles are full of sugar and can help get things moving. Hot salty broth. Hot chocolate. [ more ]
Jan DollarYes, same Rx as IBS. The antidepressants are not for depression, as typically, subclinical doses are used. The idea is that they alter your "gut awareness" so that you do not sense every twinge that goes on. My understanding is that the tricyclic antidepressants (like Elavil) are used for IPS/IBS, not SSRIs. Could be wrong though. Also,antispasmodics are used to reduced the cramping pain. Jan [ more ]
rachelravenThanks. I'm still worried. I'm worried, what if the anal area turned "cancerous?" I know that it's probably not, and that I'm likely overreacting, but with the anal cuff left, I guess there's always that chance. The one doc told me not to think that way, that he really feels it's an early-on abscess. But I hope we can sort of sort it out. It's not really doing anything right now... not getting smaller, not getting bigger. I've tried hot baths with epsom salts, but they do nothing. From the... [ more ]
GinabelloI had a abcess in the same area and had surgery 3 months ago and packed.. I get a hardening but it's inside now.. It stresses me out but when I go see my surgeon he says its not infected.. It gets soft and for a short time and then grows again.. Does anyone have any advice for me? [ more ]
Jan DollarHot sitz baths can help an abscess mature, so it is "ripe" for incision and drainage. Antibiotics help keep it contained. Jan [ more ]
ChanginggroundGood to hear, Steph. Ileus is a tricky thing. I've had three, the latest lasting 22 days (N.G.tube for 18 of 'em) and learned the importance of decompressing your gut. Glad to hear that things have worked out. [ more ]
stephalynndthanks for the advice. my bowels were indeed asleep for 9 days. they woke up yesterday and i let out lots of gas and had to go to the can about 9 times. nothing yet today but it's in there. i am very pleased that i have no urgency. (crossing fingers it stays that way) when i finally go to the toilet lots and lots comes out like it was a full pouch. [ more ]
liz11steph if you so soon after takedown, not pooping, and vomiting... you need to get to the ER immediately. call you doctor while you are en route to the hospital. But you go to the ER. [ more ]
Jan DollarIf you have no other symptoms, I would not worry about it unless it persists a month or more or becomes severely painful. Could be anything from a pulled muscle, a torn adhesion, or even a virus attacking a nerve. If it was fibromyalgia, you'd have painful spots in numerous places. I think you'll have to see whether this resolves with time, persists, gets worse, or new symptoms develop. In the meantime, you can use a heating pad and over the counter pain meds, if you think you need them. Jan [ more ]
clz81Yes, try the Augmentin. Works pretty wonderfully for most us with chronic pouchitis. For me, no side effects and works better than any other antibiotic. [ more ]
Jan DollarHave you tried Xifaxin? It is not absorbed systemically, so works topically. It can be used in combination with other antibiotics too. Jan [ more ]
marquisThe Ceflex worked for a little big but seems to have lost its momentum. I'm tempted to try augmentin now but would also like to see what other people are trying out wrt Antibiotics. [ more ]
SolominHi Moira, Which hospital are you associated with? I lived in Toronto for almost 10 years and know all the doctors there. One thing that might help immensely is nefedine based solution cream. One of the causes that aggravates butt burn is spasms of the sphincter. Nefedepine based creams stops these spasms, thereby providing a chance for the area to heal. If you use it in conjunction with a barrier, it should be of great assistance. Feel free to private message me if you like. Solomin [ more ]
MoiraHi Everyone, Thanks so much for all of your ideas and feedback. I've been trying various solutions and have little success thus far. Just saw my surgeon today and am waiting for an appointment for a scope to see what is going on. The pain has only been increasing and now also feels like possible cuffitis. Reminds me of the days when my UC was very bad. I feel raw and tender inside and am passing lots of blood. Hoping some solutions and answers will come soon. Thanks again, Moira [ more ]
SallyJPouchFRH, thanks for the well thought out and precise description....so tirelessly written. Totally helpful! Sally [ more ]
Scott FI found Calmoseptine too intense, and successfully used Zinc Oxide and then Ferguson Formula (from Jamark) in the months after surgery. I liked the Ferguson Formula best. I also found Tucks witch hazel pads helpful occasionally. For me, at least, the need slowly diminished and went away completely after a few years. [ more ]
kathy smithI'll keep everything crossed for you too. Including my eyes. kathy [ more ]
beckysmomPauln, Thank you. My daughter had a strictureplasty in '08 at Weill but then she needed a pouch redo, due to the stricture at the inlet, in May 2012. She seemed to be okay after that surgery and getting over the complications with it, but in Aug she had a blockage and everyone thought it could be adhesions. Then a blockage again in Sept, and Nov and now this past one would not resolve on it's own at home. Everyone is waiting on the biopsies now so we have no idea what is down the road. Thank... [ more ]
paulnbeckysmom,if you need information on strictureplasty i had it performed on me at weill cornell medical center in ny by dr sang won lee due to the fact my i had a terrible stricture in the anus.The surgery is quite painful but after 5-7 days pain and soreness dissipated.I hope this gives you more information and i hope your daughter feels better.pauln [ more ]
beckysmomThank you CT and gmarie. Thank you Jan for the information.She originally had the j pouch surgery in '03 because they were afraid (and so were we) of using any biologics due to her severe situation with 6mp and her getting the PCP Pneumonia. The GI here thinks that her getting the PCP was more the high dose steroids 60mg medrol more than the 6mp dose 62.5mg or the combination of the 2 at the time. Whatever it was she was extremely ill and almost died. Before this pouch revision in May, she... [ more ]
liz11mary I have never heard of florastor as a preventative for cdiff. And I have been treated by some top notch GIs, including Dr. Shen at Cleveland clinic. I will ask next time I see him. Also it is NEVER very difficult for anyone to get cdiff. Cdiff is what triggered the onset of my ulcerative colitis 10.5 years ago. The last time I had been on antibiotics was 7 years earlier AND I had not been anywhere near or in hosptials or nursing homes in the prior 5 years. That is why I always say.. get... [ more ]
Rowans momDo you take Florastor? My other Jpouch moms are shocked bc they are all under the impression it is very difficult to get with a jpouch. Let alone without any exposure or antibiotic use. [ more ]
Rowans momIt is the active ingredient in Florastor that helps with c.diff. [ more ]
JessGoguenGreat news is that I had a pouchogram on Monday and my takedown the following afternoon. My doc still sees what he thinks is a tiny tiny leak and believes it will get better with time. I am dealing with butt burn and cluster frequency which I imagine will change once my pouch stretches and I can empty in one visit instead of multiple. I am also contemplating purchasing a bidet in the next few months as I believe it will be a great investment for my new journey. [ more ]
Former MemberMy only advice is to really ask risks and benefits of trying to resection the leak in pouch. My spouse had a leak that they found tried to Fix was unsuccessful went back in to remove pouch due to Inflammation and swelling and there were unfortunately more risks To redo pouch. After 11 surgeries for My spouse in 4 years, I honestly believe it's so important to really think about your own situation how Many surgeries, and fixing pin hole Leak in pouch, are the risks understood and discussed at... [ more ]
kathy smithWhat a great gift to ask for! Yea for your awesome husband!!! kathy [ more ]
dennyp3Wow, I really hope she feels better soon. I hate the thought of a little girl feeling like this. I know how I feel when I have issues, and I can't imagine how a little one deals with it. One of my worst fears is that I pass on my intestinal issues to one or both of my kids. Good luck with this to you and Rowan. [ more ]
kathy smithSending healing vibes your way! Please let us know how she's doing when you get a chance to breathe. I'm so sorry you're all going through this. kathy [ more ]
Rowans momDarn it! C diff starting Vancomycin. If it doesn't help Flagyl and she gets neuropathy from Flagyl. Ugh [ more ]
ju330That's what I was thinking too, maybe a partial obstruction... well, I guess I may never know. [ more ]
Jan DollarNOW that sounds like it was a partial obstruction. The can come and go suddenly. If things stay quiet, there won't be anything for them to see come Monday. I guess you were sort of lucky the doctor was not in today! Gave you time for things to fix themselves. Hope you have a quiet weekend... Jan [ more ]
ju330Thank you guys for your responses. The soreness/pain subsided as the day went on; by the afternoon it was gone completely. I didn't even take anything for it... Called my GI and then remembered that his office is closed on Fridays, so I'll call first thing Monday. I was worried about the possibility of another abscess, but this felt different than the other two I have had, and there was no fever. Sitting here right now I feel perfectly fine. So weird!! I guess I'll just see how the weekend ... [ more ]
Uc-DanielleI know I remember! But this seton is literally a pain in my butt. I hate it so much but it's better than it was a month ago. I was absolutely miserable. I have to go back in a month I'm scheduled January 7th preop and January 8th EUA. That will make my 3rd EUA and I know he is just going to tighten the seton a make me miserable! But I wouldn't want anyone else doing it! He told my parents no c word yet and I keep praying it won't ever be. [ more ]
liz11hey danielle.. I luv him too! I wouldn't trust another colorectal surgeon touching me EVER. Just had an EUA on tuesday with him and another set for early january. when is yours? we were there the same day in nov. for euas. also how are you doing with your seton? any improvement? I am in so much pain from tuesday. no drain or seton, so I have no clue why it hurts so much this time. It was my 6th eua. thank goodness for percos. [ more ]
Uc-DanielleI would also like to know why you don't think dr. Remzi is all what he seems to be? I He is my surgeon and I wouldn't go to anyone else if I had a choice. He's always been nothing but a sweet guy to me and has always been "warm and fuzzy" with me. I'm curious to hear what others think. I've never had a problem. I have to go back in a month too for another EUA. [ more ]
ChanginggroundThanks for the replies. I think I'll be fine over time. but right now am not happy. Diet, Diet, Diet... [ more ]
Mountain ManHi Steve, I started to get pouchitis like symptoms about 3 weeks post-takedown and it really scared me. It lasted for a couple of months until my body got used to the pouch. I had severe gas pains and then shooting pain in the anus continually. Sitz baths worked well for this and I took two or three a day. It did finally go away after awhile. I'm sure this is what's happening. Most of us have had the same experience. Try not to worry, it will be fine. Eat foods that are easy to digest and... [ more ]
liz11I had pouchitis and cuffitis immediately from day one of takedown. Though it was left undiagnosed until about one month later as my surgeon at that time was a $%##$%#%. It got diagnosed when I went back to my GI doc. [ more ]
Jan DollarNot sure what the surgeon's point is when he says none of his patients are on long term disability. Does he think of it as a badge of honor or that other surgeons are less adequate because some of their patients are? There's a first time for everything. My surgeon told me I was his first patient with complications after j-pouch surgery. Guess I broke his record... Perhaps if her surgeon is releasing her, then it is time for her to begin seeing a GI, since her problems are not surgical. Jan [ more ]
TE MarieI sent her an email and asked her to help here. I hope your fellow Californian sees my email tomorrow as she is leaving the state Friday. She maybe released as her surgery is complete and the wounds healed up but that doesn't mean that she is able to do her job yet because of the factors you mentioned. If it were me I'd have someone, like you, call the state agency to ask about this for her. She may be stressed and they should be able to answer questions without knowing the specific person. [ more ]
fqhi thanks for your responses. it is state disability i believe. Short term disability has run out (4 months?) so now it is becoming long term disability that she needs to apply for. The doctors have to support it though. I saw the application. It asks for ALL doctors names and contact info. So if they contact this doctor of hers (the CR surgeon), that particular doctor won't support her, and that could cause it to be denied, right?. The disability office said she needs to also complete... [ more ]
CC RocksI had surgical dilation done. had all 3 of my surgeries at Clevleand Clinic. My takedown was October 7, 2010. I had problems emptying, Dr. Costedio did my dialtion under a twilight anesthetic , could not finger dilate was too bad. I was fine after not a big deal. [ more ]
kkI was told I have cuffitis and given canasa and told to have pelvic floor therapy. Didn't think I even have a cuff since surgery was done in 1985 so then doctor said it does not specify type of inflamation. For 9 yrs. I was told pouchitis. I would be willing to bet the ulcers have always been in the same area. he also told me to eat more smaller meals and drink lots of water and drink can't remember right now what b/c I didn't see a difference. Its to make it more formed but soft. I have... [ more ]
NurseAlexYour situation sounds so similar to mine! 7 years with no issues then I had a bad stricture causing a partial blockage requiring surgical dilation. I had a bad case of pouchitis and ended up after several dilations, antibiotics, etc., at the MAYO being treated for chronic cuffitis. Don't mess around with this, while it could be a very minor thing, it may be a recurrent issue that has to be followed. I now do a whole regimen of creams, suppositories, Levsin, daily dilations with gloved hand,... [ more ]
clz81I do manage my chronic pouchitis with antibiotics, however, I was on a prednisone pack for a week for an issue with my shoulder. The steroids did help a lot. With the number they did on my body when I was 14 (osteopenia), I shy away from them now. But I figure that they probably can't too too much harm once a year or so to calm down the inflammation. I haven't tried any of the UC meds. I don't have cuffitis at at all, but a lot of people with pouchitis also suffer from this, and get results... [ more ]
Matt1701dThanks Steve, i might query about Sulphasalazine, haven't had that sine the old Uc days. I seem to remember that it was quite innocuous... [ more ]
ElmerFuddTypically doctors go the antibiotic route to treat pouchitis (cipro, flagyl, others). But all of our old friends would probably be helpful too: sulfasalazine (has helped me, and found one study supporting it's use - it is an anti-inflammatory and an antibiotic of sorts), prednisone, Entocort, etc. The hard thing is all of these are hard on the gut by themselves while treating inflammation so you have to find what works. Steve [ more ]
ElmerFuddDenny - as Jan can tell you I've been there and done that. I too have a rheumy who can't find anything she can treat based on symptoms / evidence, and it doesn't appear I have spondylitis. After a few years with my rheumy, and switching primary docs to get some new ideas, I ended back at the pain clinic and was finally diagnosed with fibromyalgia too. She did say she couldn't definitively say whether my pain was caused by: 1) osteoarthritis pain 2) inflammatory arthritis pain 3) fibromyalgia... [ more ]
Jan DollarAbsolutely! Not all rheumys are created equal, and you need one who really listens. Time and again I hear of patients whose rheumys will not diagnose because "physical evidence" is not present. Well, sometimes it takes many decades for those changes to become evident on imaging, and by then, the damage is irreversible. Plus, you are suffering in pain all that time. I also agree that being able to express how you feel is important. If you think you may have enteropathic arthritis, here is a... [ more ]
dennyp3Everybody, thanks for responding. I do see a rheumatologist, but it's as if he downplays the pain I feel. I don't know how to put into words to him how I feel in a way that he takes serious. I'm really considering changing to a new rheumatologist that maybe I can get through to better. I must be saying things wrong. I am lately feeling really crappy in the abdominal area. I'm trying to just breathe through it, but I'm afraid it may land me in the ER soon. [ more ]
skn69Thea, With the sleeve surgery you may have problems eating carbs in large quantities (or any quantities at all) so you may want to make yourself chicken meat balls with rice inside them to give yourself an easy and digestible fast food...it works with ground fish too...just mix some cooked rice with the ground chicken or fish and an egg and cook or bake in your favorite sauce (tomato may be too acidic in the begining) but yoghurt based sauces are pouch friendly...then you can easily dose... [ more ]
Rowans momWe bought a coco bidet and daughter has zero butt burn now. [ more ]
NewPouchMikeThea, it was 6 months after takedown for me before I finally started to feel pretty confident it was going to be ok............ I had horrible burn...and lack of control etc.... A couple thoughts for you... 1)Try doing most of your eating early in the day. Eat big breakfast. Potatoes and pancakes were great for me (and still are). Thank god for potatoes. I did (and do) well with either baked, mashed, hashbrowns, homefries...even french fries...... They bulked up stool and they didn't seem to... [ more ]
clouseau`````Jeane, Ally Kat, TE Marie, Vanessavy, Thanks so much for your input. I will do more investigating. The herbals they told me to take to fight it were lactobacillus acidophilus, bifidobacterium lactis probiotics arabinogalactins, soy lectin, green tea extract, berberine, concentrated oils of thyme and oregano, lglutamine (Can't take with cancer) Chinese licorice, and lactoferrin. [ more ]
AllyKatMy son had that test and they found bacteria in his stools as well. If I remember correctly they wanted him on xifacan and some herbal cant remember the name for 2 weeks. He just did the herb. His UC was not that bad so I'm not sure if this or did not do anything. I hope u feel better soon. [ more ]
TE MarieI don't know what type of bacteria you are being treated for so will talk about mine. I use to get C-Diff infections when I had UC and have had a nasty one or chain of them since my take down. Unlike Vanessavy I can not take Cipro as there are many antibiotics which can cause it. I take Flagyl to get rid of C-diff. I also use VSL#3DS daily as my probiotic. I understand why your doctor is waiting to put you on a probiotic as they can work against your antibiotic. I had to time when I took... [ more ]
TE MarieSorry your sister has Fibro, does she have IBD too? I hope not. I quit smoking years ago and can't exercise because of my foot pain and numbness. Some days I can't drive as my feet are too numb. I have to hold on to hand rails going up and down the stairs all the time. Make sure to let us know when you are going to have your surgery and good luck! [ more ]
NicktheNurseHey TE Marie, Thanks for sharing, what a mess you went through, glad you’re on the up swing Cleveland Clinical and Mayo both are great hospitals with great surgeons. My sister suffers from Fibromyalgia that stinks. I don't know if you smoke, but it’s heavily documented in literature that stopping will improve symptoms. Also, exercise helps. I have my VSL#3DS ready for the day after the surgery, or whenever I can take PO. I'll ask him about the mucusostomy. I appreciate all the advice. Yo... [ more ]
NewPouchMikeNick you were smart to check in on this forum early in the process. The search functionality is great too.... just put a search string in search box and you'll get a whole bunch of great posts returned to address questions you might have... Good Luck !!! [ more ]
David1969I have had two illiostomies and two J-Pouches created. The first one was in 1997 and the second was in 2010.(The first pouch began to prolapse in 2009) Both came with their own set of problems but the commonality between them was after the takedown surgery was the pressure I felt when I had to go. (Which was every 10 minutes it seemed.) It was like a balloon that was too full. After weeks of learning to control movements (both times) the pressure seemed to subside somewhat. The pouch hurts... [ more ]
Former MemberBasicslly I'm in the same boat. 2 weeks post takedown and 'generally I'm ok' but I still get these bouts of extreme pain that last 10-15 seconds. Sometimes it's gas. Sometimes it's not. It always makes me want to run and sit down on the toilet though. Probably doing 10-15 a day at the moment. Hoping it goes away over time but I'm seeing my surgeon in 3 weeks hopefully he can shed some light on it. I also had a pretty bad stricture that he sorted out under GA 1 week before takedown when he... [ more ]
ValentineMary-Lynn I know the pressure you speak of and it makes life uncomfortable. Sitting, driving, standing can all hurt. I was really looking forward to having my take down surgery because they said the pressure would go away then. And it has subsided, I even drove comfortable for one whole day. The thing is I have a colon stricture and it usually does work itself out but sometimes it doesn't. It would not hurt to bring up to your doctor because they can lead into complications. I am on week 7... [ more ]
crick05Ok so I am doing better. Had a BM just now and passed a LOT of gas so I think the worst is over. Stomach and near the ovaries is still painful but managable. I have taken imodium before, just after the surgery, and it did not do anything for me at all. Started taking it again a couple of weeks ago and it seemed to really slow things down a lot and I had the full feeling the next morning after a full nights sleep of 8 hours. That is with just one pill. I think you are right Jan and that I am... [ more ]
Jan DollarCertainly, any bowel slower can have this effect. As you can see, each of us has our own tolerance for everything from foods to medications. Was this the first time you took Imodium? Usually a single dose does not do this, but more often from over treating a case of diarrhea. So I would think that it is more likely that you had an adhesion related obstruction. But if this was your first time trying it and you took only one pill, it could be you are just very sensitive to it. Jan [ more ]
Jan DollarYeah Mike, that's the stuff! It contains camphor, menthol, and eucalyptus. Cooling on intact skin. It has some of the same ingredients as Vick's Vaporub. Your not supposed to use it on broken skin, that's why I was concerned if there was a fissure. But, it's fine on intact skin. It reduces pain by causing counter irritation (sort of like capsaisin). Jan [ more ]
SolominWhat you can also do is get a script from your doctor and ask for Nefedepine based cream. It is a mixture of petroleum jelly and nefedepine, which is applied to the butt and sphincter. It's purpose is to stop spasms of the sphincter, which will help ease the pain and allow it to heal. This cream was a life saver for me when I had pain down there. I also used a barrier cream like calmoseptine. A combination of both helped. good luck! Solomin [ more ]
NewPouchMikeIt's Noxema Deep Cleansing Cream (Blue tub) ... the stuff I'm referring to Jan I don't feel any menthol (?).. It's just cool/cold/cleansing.... sorry if I didn't clarify the type it was... [ more ]
skn69Hi Eric, Take a deep breath and answer the following question....is it every single time you intubate or only the times that you have difficulty getting the tube in (like in the morning...the first intubation when you wake up with an overfull pouch)? (or the couple of hours afterwards?) Generally speaking our pouches (or stomas) bleed more than j pouches because we have to introduce a tube into them (kind of like a j poucher when he/she has a scope and bleeds afterwards) 4-8xs daily and even... [ more ]
Jan DollarWish I could help you Eric, but my K-pouch knowledge is pretty limited. If you are not feeling faint or weak, the blood loss is not serious. But, still, if you have brisk bleeding each time you intubate, I'd be concerned about your clotting times. Have you had Pro-times done lately? Are you on any nticoagants or anemic? Significant anemia would mae you more prone to bleeding because your clotting factors would be down too. If it were me I'd put a call into Dr. Cohen's office in he morning,... [ more ]
Patti AnnHi. My name is Patti. I have had the horrible fissures you talk about. Mine felt like I was passing broken glass. I keep, on hand, lidocaine ointment. The doctor prescribed it for me. I use it before I go - insert some into your bottom...gently. Then I use the wet wipes. I also sat in the tub alot. Hope this advice helps. And keep the lidocaine with you. It's a god send. [ more ]
MNpoucherNifedipine 2% gel is what I use on my reoccurring fissure my doctor at Mayo prescribed it a year ago and said it was relativity new and I have to go to a special pharmacy for it because they have to make it there. I also take Epsom salt baths everyday. Tucks and other hemorrhoid ointments can help. Your doctor can also prescribe Ansul cream but the Nifedipine works much better for me. It also helps to use wet wipes instead of regular toilet paper. Don't be afraid to ask for pain medication... [ more ]
KarbearThere is a prescription ointment your doctor can prescribe for you that will numb the area and give you relief. I forget the name, but I'm sure if you call your doctor he/she will know. In the meantime sitz baths 3-4 times a day worked great for me. I just sat in hot water with some epsom salts for about 15 minutes at a time. It took a little while for the fissures to heal, but they eventually did. [ more ]
JeffDCMarie, when my stricture makes an appearance, it is about 4 or so inches in. [ more ]
TE MarieJeff, how far up are you talking about, an inch at the most? I'm curious because of my daily use of suppositories and I think that I insert them that much at the max, of course they are about an inch long so a max total of 2" until the suppository hits something. When I first heard about dialators I was scared to death I'd have to use one. Thank you [ more ]
JeffDCAbout once a month, my stool is green. Not sure if it is something I ate, but it does look surreal. [ more ]
Jan DollarMy first suspicion would be that you caught some sort of norovirus or food poisoning, since it is sudden. If it is a virus, you just have to ride it out. Noroviruses cycle pretty quickly, a few days to a week or so. But, you need to be careful not to get dehydrated, as we are more susceptible. Plus, it is highly contagious, so make sure everyone is washing their hands and covering coughs (with a tissue or the inside of your elbow- NOT your hand!!!). If it gets real bad or persists, could be... [ more ]
TE MarieI haven't used it but have a suggestion. I've tried making my stool softer, cutting back on Metamucil and Imodium, and found it felt better coming through softer. The doctor knows more than I do, just a thought from me. [ more ]
jeaneWhy are you considering BCIR versus mucosectomy with rectal cuff removal and pouch advancement. They dupposedlyvremove the remaining disease using this approach and suture the pouch to the anal area. Other people on the board have had the latter done for chronic cuffitis. [ more ]
Jan DollarFirst off, it probably is not a good idea to use those terms, because they basically just indicate whether you intend to keep the ileostomy or not. But, often, an end ileostomy is referred to by lay people as a permanent ileostomy. But, it can be temporary (as in the first step of a 3-step procedure). This is where the end of the small intestine is brought out through the abdomen. The rest of the small intestine/pouch is sewn off "blind" inside or removed. This type of ileostomy is easiest... [ more ]
JeffDCGoogle hegar dilators. Have your doc tell you the width that he wants your stricture stretched and order the appropriate size. PM me if you want-I sent a fellow jpoucher the steps I took. Strictures were the bane of my life for a while post- take down. But it has been a several months since I have had one. They can come and go when they want. [ more ]
Jan DollarIt is usually handled by an in office or under sedation/anesthesia dilation. It can be done with a finger (if not too bad) or balloon dilation. Sometimes repeat dilations are needed, or home dilations to maintain the opening. Only very stubborn cases require surgical repair. Jan [ more ]
SubzeromamboI had to stop the Flagyl against doctors orders. I just could not take the side effects. I feel much better. [ more ]
Former MemberThe only time I had the experience with Flagyl was recently....I was bleeding at the time. I felt Flagyl was making me worse. when I would alternative between cipro and Flagyl my cipro times were always better and now Flagyl is on my cannot tollerate list. Good luck! I should note it took many years before it got to that point but I would take the dizziness seriously and get a some blood work to check how you are when on it if you want to stick with it. [ more ]
SolominI had the nausea with Flagyl. It seems that in my case I cannot tolerate it anymore. Solomin [ more ]
dgloria5Becareful if you go out golfing on a warm day and your head sweats it will run down and burn your eyes. I once heard if you mixed vodka and red pepper let it set for a few days then rub it on your head it will grow hair so I did it on my husband he went golfing started to perspire and it ran down and burned his eyes. [ more ]
Rick822You use a juicer or blender and apply to top of head.This is on U-tube lots of info on internet, I have not been doing it long enough to tell if its working yet. [ more ]
fleanutDuring my worst colitis flare up when I still had my colon, I had to spend a week in the hospital. They were having a very hard time getting an IV in my arms because of my dehydration and poor health, so they started shaving parts of my arms thinking it would help them find the veins. Those shaved spots stayed mostly bald for several months until my body finally started recovering. The hair on my head had also gotten pretty thin at that time, but I don't remember noticing anything else with... [ more ]
Jan DollarHmmm, seems weird to me. Not weird that you have a seroma, but weird that your surgeon chooses not to drain it when it is causing you pain. They can become chronic, especially if they continue to grow. I had to have mine asprirated about five times, and this was after having an indwelling drain for two days post op. I didn't even need any imaging for the surgeon to know what it was or what needed to be done. I would keep bugging the surgeon about it...squeaky wheel, and be sure to emphasize... [ more ]
Subskysurgical staples are composed of either stainless steel or titanium, both of which are not magnetic. [ more ]
Jeff1959I had an MRI and they said the surgical staples were OK. They did not cause any problems. I would recommend you mention your staples to the tech before they get started. Good luck with your ankle. [ more ]
Auntie JoJoThank you, all of your for your candor. I have severe cuffitis and pouchitis. I have had cuffitis starting 2 years post take-down. In terms of pouch functioning I am incontinent at night, when I am asleep and sometimes, a little during the day. Therefore, if this pouch is going belly-up, I would opt for the ileostomy. permanent. I understand now that I probably had some narrowing when the first pouch was constructed in 2000 which caused an abscess. I have the poudh re-do at CCF ; no more... [ more ]
Jan DollarMine was hand sewn, but still have the 2cm cuff. So, I guess there is no one perfect way. There have been some who regretted having the cuff removed because of incontinence. There is a downside to any option. None of us has a crystal ball and know in advance what our complications would be. Jan [ more ]
jeaneThank you TE, I did know there were two choices before surgery as I interviewed the SSO surgeon and a couple of others before making my choice. All the research points towards stapled being the more technically easy surgery to do with better continence rates. I, of course, was swayed by this research and opted for the double stapled method as the hand sewn technique also involved full open abdominal surgery. I think they will find, as more people are having this surgery, that the chronic... [ more ]
KiwiPoucherBuscopan Hyoscine Butylbromide tablets work well for me to stop the spasm pain, they don't get rid of it entirely but enough to get by on. If it is really bad I take 10mg Oxynorm which gets rid of the pain and slows the bowel right down. Does not make me drowsy and I try not to do it too often. Hope you find some relief soon. Caroline [ more ]
SubzeromamboI take a very low dose of valium for spasms too. I don't feel any different but the spasms decrease. I found changing my diet to include as little animal fat as possible decreased the spasming. Right now I have pouchitis but no spasms. As to the weight gain...have you talked to your doctor about it? Twenty pounds is a lot to gain in such a short time period. It must feel very frightening and depressing. Personally, I would get off that drug as soon as possible. The health risks of being... [ more ]
Uc-DanielleMy tolerance for pain medications and the Valium is high. It just does enough where the spasms stop. [ more ]
Auntie JoJoRe: ostomy re-dos. I had 3 ostomies; one from Johns Hopkins with a poorly constructed cuff; a second from the pouch re-do at CCF and the third 3 weeks later from a surgical error. All 3 times the ileostomy was on the same side, same place. This was in 2000-2001. Perhaps there is new research out there suggesting that changing sides is a good idea. [ more ]
jeaneLiz, I question some things in retrospect as why augmentin was thrown at me very quickly after my first surgery due to leakage. My takedown was also scheduled two weeks early due to what my surgeon called diversionary pouchitis. My surgeon commented my jpouch would be the size of a small football when it stretched and seemed pleased with the size. Not sure if that means anything. Last scope showed some mild inflammation in the limb snd again he was not concerned about it and discussed pouch... [ more ]
liz11jeane.. my guess is that Dr. Shen is going to personally want to scope you. I cannot imagine him not doing that. In fact, with me, even after Dr. Shen scoped me, figured out what was wrong, and ordered other tests.. Dr. Remzi also scoped me under full anesthesia in the operating room BEFORE they came up with a definitive plan of action. I ended up having 3 scopes in 5months. One from my local GI, one from Shen, and one from Remzi. And all in less than six months from takedown. Also, I try to... [ more ]
SubzeromamboI take liquid vitamins and minerals in a small glass of orange juice plus 5000 IU of Vitamin D3 gel caps. I had horrible stomach pains from solid vitamins and my body was not absorbing as much as I needed so I switched to the liquids. My test results have been normal for two months now. Unfortunately high fiber increases my motility which has never made any sense to me. I expected high fiber to slow things down. Our bodies are so individual that it is hard to predict how each of us will... [ more ]
Michelle RThanks!!! I knew I wasn't losing my mind...haha..I'm terrible about going to the dr...which is how I ended up nearly dead and having and emergency colectomy in 2005... After 5 years, I just recently had a pouchoscopy and I have a slight case of Pouch-itis. He also stretched me, but I dont' see much difference in emptying. I'm waiting for my follow up to talk to him. It's become unbearable lately where I'm paranoid of leaking at work. (I work in a classroom and can't just up and leave) I... [ more ]
suebearAhh....more information is helpful. You might need something stronger than imodium/lomotil if you have tried those. Possibly codeine? Have you always had leakage or is it only when you exercise? Sue [ more ]
Jan DollarMy concern is that there is an undiagnosed upper GI condition that would not be addressed by pouch reconstruction. I can see going forward with the surgery to improve pouch function, because your pouch shape could be causing constipation symptoms. But, if your pouch shape was the source of your upper GI symptoms, you'd have a lot of distended small bowel near your pouch from chronic stasis and a backing up of stool. Maybe there is a motility disorder, or Crohn's that could not be detected on... [ more ]
SolominHi Jeane, My file has been reviewed (in person) by 6 surgeons and one academic doctor who specializes in jpouch issues. All have said that I am in need ot jpouch reconstruction surgery. I did have a CT scan (two within the last 6 months) and outside of inflamatory stranding (whatever that means) they have been normal (i.e. no bloackage present). I keep on having what appears ot be partial obstructions on a fairly regular basis. I have a complete history of several tests which show the shape... [ more ]
jeaneSolomin, I am not an expert, but your symptoms do not sound like pouch dysfunction to me, however if I recall you mentioned your pouch is misshaped at this time and I understand you have been suffering. You would need a pouchoscopy with biopsies, a pouchogram test and an MRI/CT scan with and without contrast to really rule out pouch dysfunction that requires pouch advancement surgery. Blood tests would be helpful also. I have just had all but the pouchogram for my recommended pouch... [ more ]
clouseauSolomin, The young 30 year MD with the experience sounds like a very viable option from all the comments I read. Young is much better than old when it comes to a surgeon. My thoughts are with you and hope the very best for you. [ more ]
TE MarieI agree with Ant1982. Can you get your CTscans, MRIs and whatever tests reviewed by an expert at the Mayo or Cleveland Clinics? How can you decide what to do when none of the surgeons appear to agree and/or have little to no experience. It looks like whoever would be performing exploratory surgery. I'd suggest you make an appointment but think I remember someone on here talking about getting someone at the Cleveland Clinic to review tests, such as those above. If that doesn't work out then... [ more ]
Ant1982I had surgery done in the UK - and I was lucky enough to have one of the most experienced and skilled surgeons here. In his opinion a surgeon isn't truly "proficient" at pouches until he / she has completed 40 pouches. This makes it difficult for most surgeons to get the experience they need as in the average large teaching hospital (in the uk) they are likely to do 2-4 of these operations a year. My surgeon has an excellent success rate and is confident that experience is key as men and... [ more ]
SallyJPouchBecky, you have been through a lot. I sure hope you get another opinion, as they suggested. I really feel for you. sally [ more ]
BeckyMthanks jan, yeah I was thinking that maybe in the 5 days in the hospital that maybe it could have healed up, I never hadparts of feces coming threw, more like just a browinsh/muddy looking watery discharge, I thought it was old blood.That is what the dr thought he saw as well,The pain and the fluid had been going on for about 6 months but just got really bad when i posted to you guys on here,(the pain anyways), i was just wondering if they could have seen it on ct scan and then it was gone... [ more ]
Jan DollarSorry about all your pain and frustration, Becky. There is no way a fistula could heal in the time it takes for you to go from the ER to another hospital. These things can take months or years to heal, if they ever heal at all. If the hole was so tiny it could heal in less than a day, it could not drain feces into your vagina. That said, that does not mean you did not have the pain and other symptoms you were having. So, it is very good news that this is not a fistula...but what in the heck... [ more ]
Ant1982I had the same problem. Your doc is right - where you can, avoid barrier creams as these make it worse. The trick to solve this in my case was to use salt water when cleaning the area down there and to take a probiotic daily such as acidophilous (sorry probably not spelt correctly). Don't wear undies at night - let the air get to it and like the earlier post suggests dry down there with a hair dryer everytime you wash. If can avoid washing too frequently all the better. I also used Canesten... [ more ]
Guestuse hair dryer to dry off after bm, wear cotton undies, if possible sleep on belly buns up in the fresh air. anything to keep dry. even powder your bottom. [ more ]
Guestuse hair dryer to dry off after bm, wear cotton undies, if possible sleep on belly buns up in the fresh air. anything to keep dry. even powder your bottom. [ more ]
Jan DollarSure, adhesions could easily be contributing and probably were a source of pain to begin with. But, say you are a severe adhesion former, it is quite possible that the mesh was like throwing gasoline on a fire and stimulated even more severe adhesions. That is why I would really think twice about the mesh hernia repair unless the hernia was a big deal, not just a big hernia. My incisional hernia was the size of a grapefruit, and my surgeon said it was completely elective to repair. Jan [ more ]
Jamie_M_WOk. Yeah she told me that it was a large hernia underneith my belly button on my surgical line. And said she would use a mesh patch to repair it. My pelvic pain has been going on for quite sometime now along with the rubbing I am feeling. It used to come and go but it's been more constant and has gotten worse. She has known about this for awhile because I have mentioned it to her when I first started feeling it. When I had my hysterectamy I was told I had alot of scar tissue/adhesions in my... [ more ]
Jan DollarI can understand your frustration, but try not to get yourself worked up too much about these communications with your surgeon. Obviously, your surgeon cannot feel what you feel, and she probably wants this to not be about the surgery she did, but about your inability to cope or over reacting. I can understand her desire to have a nice clean record too, but, you just cannot pooh-pooh serious, chronic pain. I am glad she asked about the second opinion, as that means she is being open minded... [ more ]
kathy smithIt's probably not completely possible to prevent either but it is possible that you'll never have either. One thing that has been discovered is that taking NSAIDs can lead to pouchitis, so try to avoid them. Also, ingesting pro-biotics can help. I've never had either pouchitis or cuffitis. Some people have a bout or two of pouchitis which is cleared up with antibiotics and then all is good. I eat sourdough toast every morning which has very mild pro-biotic qualities. But living in constant... [ more ]
cksindThank you bootstrap My surgeon says he has left 2.5 cm rectal cuff. In his view it is impossible to do with less than 2 cm. He has no idea about blood in stools before takedown. But he says "no problem." (perhaps because it is not 'too much'). Kindly note that my system was not cleaned (flushed) before surgery, though the doctors had the time to do this because my surgery was elective. Is it possible that the present complication is the product of poor preparation? Is it possible to prevent... [ more ]
bootstrapAccording to my surgeon (one of the top colorectal surgeons in the country at a well-known teaching hospital), mucosectomies are not really ever done any more. They were more common back in the early j-pouch days when more of the cuff was left in tact, but now, especially since the introduction of the double-stapling technique that has cut way down on complications and issues, they try to leave as little cuff as possible to prevent cuffitis (in my case less than 1cm) - just barely enough to... [ more ]
AdroenSorry to hear what's happening to you Solomin, As much as I hate what my Jpouch did to me(and still is doing to me), I hate that you can't get yours reconstructed even more. What ever happened to people having hearts... You'd think it should be your call when to give up or not give up. Keep trying is all I can offer, Ad [ more ]
skn69Solomin, Some of us are not text book cases where our surgeons can be 'good enough', go in, do their jobs and never have to see us again...some of us are repeat cases with unusual complications where 'good enough' is not enough...and our surgeons, those 'good enough' doctors...are at a loss for what to do. So they fluffle, muffle, shuffle our files to the bottom of the pile and pretend that they do not know us if the cross us in the hallways....They avoid call backs, ignore pleas and... [ more ]
SolominIn Quebec, if there are no surgeons qualified to do a specific surgery, the surgeon looking after you has to right a letter on behalf of the patient to the provincial medical board so the patient can get reimbursed for surgery outside of the province. My surgeon claimed that there were no qualified surgeons for jpouch reconstruction. Following that statement, for 2 years he did absolutely nothing - no help locating another surgeon and no letter (which I requested several times); After 2... [ more ]
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.
Forum moderator and advisor Jan Dollar R.N.
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