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J-Pouch ForumsGeneral Discussion
Pouchitits? - Most Symptoms cleared up however still getting cold chills
Anthony GambleAnthony Gamble
Jan Dollar Glad you are feeling better. I am also with Scott and would not assume your symptoms were due to Cipro, but more likely just residual symptoms of the resolving abscess, especially since you had chills before you took the Cipro. Of course, anything is possible. It just isn't likely. Jan [ more ]
Scott F Thanks for letting us know, Anthony, and I'm glad it cleared up on its own. Chills aren't one of the reported side-effects of Cipro, but strange things happen every day. It still might have been some residue of the abscess (a "last gasp"), but who knows? [ more ]
Anthony Gamble Hi Jan and Scott, Thought id update you on what went on. So i finished my 10 day course of cipro 2 days ago which cleared up all my pouch symptoms, however i was still getting and awful chill down my back and feeling unwell ( no fever) while still taking it, only paracetamol kept this at bay. I seen my surgeon on tuesday who performed a rectal exam, he said i have very good muscle strength down there, the pouch felt great and could not feel the abscess which i occurred in January. I... [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch and Diabetes 2
S SaraJ
skn69 try PMing me...I have tons of meal plans...all simple, easy to do, easy to cook and delicious. My favorite thing is fresh herbs (and spices)...they go a long way to transforming something bland into something fantastic. Cooking methods do not need to be difficult either...Searing meats quickly then throwing them into a slow cooker or the oven works fine...takes only a few minutes of prep time and then throw a handful of veggies (sweet potatoes or baby potatoes, cherry tomatoes, onions &... [ more ]
SaraJ Thanks, that sounds doable. I wish there was a program we could put in all our ailments and have it generate a menu for us that would work. [ more ]
skn69 Yes, sort of...my uncle had a both too (he lost his colon to Fap)...his diet from what I remember was pretty basic and very well balanced. Usual meals were grilled salmon, a baked potato, small salad (careful of the dressing) and whole grain bread. Oatmeal with berries for breakfast...his doctor insisted that he have a healthy dose of protein at each meal so there was some yoghurt in the mornings, fish or chicken with lunch or dinner and lots of steamed veggies, whole grain bagels, rye... [ more ]
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J-Pouch ForumsGeneral Discussion
X
C claire
MJL Thanks Claire, no unfortunately Cipro is the only antibiotic that really helps. He is on Omnicef 300 MG twice a day without relief. Cipro causes tendon and muscle pain, fatigue, etc...he takes it when he feels worse. Let me preface this by saying his good days would be a nightmare to someone without a j pouch , much like all of you. He takes numerous supplements, tumeric, cinnamon, magnesium, probiotics, multivitamin, etc.. I'm thinking about giving him a drug holiday, stopping most of... [ more ]
Jan Dollar Claire, I have fixed the broken FDA link in your post. Plus, I deleted the duplicate topic that had no replies and combined the topic headings. It is redundant and confusing to have the same information provided in multiple topics. While I understand your desire to get this information out there, it is best to have it in one place so all replies are together. Jan [ more ]
skn69 Claire, I had very little to do with antibiotics for most of my life...other than when a teen and repeatedly hospitalized for 'gastro' (at what point were they going to finally admit that it was UC?...never) and pre and post op for most of my surgeries. Plus the usual kid sized infections etc. My pouch had pouchitis the first few years and I did the flagyl/cipro dance but finally got off of it with diet. It took til '99-2000 for me to be stuck on every increasing doses of antibiotics... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Diet and Weight Management
ljfergusonljferguson
fighter32 Here is my advice to all of you. Go see a nutritionist especially one that specializes in ulcerative colitis or Crohn's disease. I found out a few weeks ago that I am a type 2 diabetic and I have had my surgery almost ten years ago. I started seeing my nutritionist I have never felt better and I am eating the healthy stuff a lot of it is just trying to find the right balance. So that is my advice to you ladies I hope this helps you I hope to hear from all of you soon. [ more ]
skn69 I think that we are all stating the obvious here...sick people get skinny and healthy people get fat...or that is how it has been over the centuries...if you were thin you were considered sickly (duhh) so why are we so surprised that once we get well we put on weight. Right now I find that I have 2 different dietary lives. My work life where all carbs, fibers and sugars are forbidden (sugars make me sleepy and I don't have a job where I can wink out and fibers force me to spend too much time... [ more ]
twinkie ❤️
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J-Pouch ForumsHelp! Need advice now!
Pouchitis
S sally85
Jan Dollar Do you have lidocaine gel for the fissures? It is a topical anesthetic. You can even try hemorrhoid cream to numb the fissures, but the lidocaine is better. Prescription only though. Sitz baths are good too. Sounds gross, but even using a warm sitz bath to empty your pouch can be useful. A bidet attachment for your toilet would be money well spent. Jan [ more ]
sally85 Thanks Jan, it's so painful when I go to the loo and it stings like crazy and burns, I cry everytime, even when I'm not going to the loo I have the burning feeling, I feel so lousy I don't know what to do-I'm on mesalasine suppositories for confirmed cuffitis, antibiotics for suspected pouchitis and a cream for the fissures, my iron level is now so low I need an infusion, I had a fall some time back to and broke my shoulder, hip, femur and knees and that's now giving me so much pain,... [ more ]
Jan Dollar If you have bad fissures they can cause spasms in your sphincters enough to cause obstruction. If it goes on long enough the fecal stasis can lead to pouchitis. Sort of a chain reaction. One thing leads to another. When you are not emptying well, that can increase your frequency because you are always full. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
My Story
K Kaitlynn
Ray C Many great replies. I find that a bidet has made a world of difference in curing the burn. You might ask your parents about purchasing one. They can be very expensive and complex, but also cheap and simple. All work pretty much the same. I have a 16 year old daughter and cannot imagine how mature you have been to handle such a painful illness. Best wishes for fast healing. Ray C. [ more ]
lablover Welcome! I am not a UC/Crohn's disease sufferer (my husband is). He had the 2 stage part done as well. The bag is just temporary! So, hang in there. What my husband did (does), is plan accordingly. Doesn't drink coffee or juices if he has to travel, eats nothing if has a long car trip or plane trip. Eats alot of bananas. Also, drink alot of liquids to stay hydrated especially if you get sick. Sending good cyber thoughts... [ more ]
Former Member I swear by the ilex paste for butt burn; from my experience ilex does heal sore skin and once applied it also protects the skin during the next bowel movement. Just after takedown and for 5 or 6 months, I used non scented wet wipes to cleanse rather than using a shower of installing a bidet, then I applied the ilex paste. 12 months later, I rarely use the ilex paste; I just use normal everyday toilet paper now and I only have 3 to 4 BM per day, although it does vary and on occasions can be 5... [ more ]
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J-Pouch ForumsGeneral Discussion
hair loss?? (aka hairless in nj)
momminatormomminator
Lesandiego My doctor told my symptom was from Telegen Effluvim http://emedicine.medscape.cotm/...cle/1071566-overview .... so it's only temporary not permanent, which was true in my case. [ more ]
eklinglevine I finished my last Jpouch surgery in February and I started developing Alopecia (hair loss). Its kind of in patches, but my dermatologist (who is a hair loss specialist) thinks that sometimes it's your body's way of reacting to stressful situations....and boy is the surgery process stressful on your body. Alopecia is also another type of autoimmune disease, so there's also that connection. hope yours gets better with time! [ more ]
Lesandiego It's like a reverse permanent. Your hairdresser infuses the protein treatment into your hair with a flat iron. http://www.webmd.com/beauty/ha...ightening-treatments [ more ]
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J-Pouch ForumsPouchitis
New FDA prescribing guidelines for Cipro And other FQs
C claire
J9Pouch Wow, Stormwatch, I'm sorry for all that you've been through! I think you're right that issues like pouchitis can be caused by not emptying our pouches well enough (there are many other triggers as well, but I have no doubt that's one of them!) It's interesting that you mention sitting on the toilet backwards - have you ever heard of the Squatty Potty ? It's a little stool that's meant to lift our knees into a more natural position for evacuating our bowels (or j-pouches, in our case). I... [ more ]
Stormwatch List of antibiotics I've tried (but not chewed in paste or taken in liquid form) since 2000: Flagyl, Cipro, Levaquin, Amoxicillin, Tequin, Zyvox, Xifaxin, Augmentin. After cultures were taken I was told Augmentin and Cipro. They didn't work until randomly, just as a hail Mary pass(I had just noticed that I hadn't digested spinach!) I chewed the antibiotics. [ more ]
Stormwatch If you decide to take your antibiotics the way I described (Cipro tastes terrible. Augmentin tastes not so bad) and you improve within days, please let me know? Dr Peter Rubin confirmed my pouchitits is non-existent. The reason is the fact my intestines weren't absorbing antibiotics. I am 90 percent better now. That should motivate people at least to look into this with your doctor. I could not leave my bed a yr and a half ago. I had pouchitits and rectal abscess. I go to the bathroom about... [ more ]
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J-Pouch ForumsOstomy & Skin
Guess what I found by my stoma today?
MysticobraMysticobra
Mysticobra So happy it worked out. Took a little longer but you made to this side. Once there it's wonderful isn't it. Not saying it doesn't have problems but I must say mine have been so minor it's not even worth mentioning. This is a breeze compared to the pouch. It didn't like me at all. I will be 60 in a few days... Married almost as long... 38...and I can enjoy what's left and go to work with no stress.... Well.. Some but it doesn't cause flares anymore. Richard. [ more ]
TE Marie Thanks for posting the picture Richard. I had no idea we had Staples like that around our stomas. I'm a 60 year old married 40 years I agree with you both. This is much better than life with my j-pouch. I wish I'd had it removed sooner but can only go forward. It's final and it is better than I hoped for. [ more ]
Mysticobra I'm not inclined to use another product. I did try the Mios way back but don't remember how good or bad they were. I tried most. I just use the precut convetec..I just like the precut... Just stick it on and the size is right. They work fine so I will not stray from them. I know what you mean that you have come to peace with the appliance. I did the same. As for the rest of my life. Ya.. Sure... Most of it is behind me. I will be 60 in June. Been married a long time (38 yrs) and if anything... [ more ]
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J-Pouch ForumsOstomy & Skin
Jpouch removal - to leave or remove rectum
SaffSaff
jeane Thank you for the replies. I hope all who have recently had the jpouch out are feeling better and those on the fence as I am come to the peace they need to make this most difficult decision. I do believe I will need to take the entire pouch out also as it have given me trouble since surgery 1. The finality is scary as you realize you have no other real options to get well. [ more ]
TE Marie Jeane, I remember discussing your daughter's impending college experience when we first had our j-pouches. My dad is currently back in the hospital for the 3rd time this year and I am afraid he is loosing this battle. I'm sorry you lost your father. You are under a lot of stress. When my GI at Mayo's made the appointment with the surgeon, himself and me about the surgery I knew my j-pouch was never going to improve. I didn't want to try for another kind of pouch. At 60 I want to get on with... [ more ]
TE Marie I wasn't mentally ready to have my j-pouch removed so had surgery to divert from using it to a permanent ileostomy last fall. I had a series of UTI'S after surgery. The antibiotics taken to get over them kept my j-pouch pain at bay for awhile. My j-pouch didn’t calm down as I'd hoped so it was removed 2 months ago. I was mentally ready. I wanted my rectal cuff removed as by then hated it and the cuffitis and strictures there. It is a relief to have it all sewed shut. I like that it is gone. [ more ]
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J-Pouch ForumsOstomy & Skin
Third stoma help!!
Ashley22Ashley22
TE Marie My stoma nurse has me changing every other day because of the way mine is positioned. I have to use too many rings and things underneath it if I try for longer weartime. All of that is too uncomfortable for me. I am using a one piece convex appliance that is cut to size and easy to put on and take off. My current stoma is my 3rd and hopefully the last one I need. Since it was created 2 months ago I am guessing it is done changing. I don't know when yours was created but maybe it is still... [ more ]
Saff HI Ashley, Do you have a stoma nurse who can help you out with trying different products ? Eakin seals can help also - under the wafer. [ more ]
Lambiepie Hi Ashley, I use bags with convex wafers, barrier rings that "turtleneck" around my stoma, and bag openings that are 1/8th smaller than usual and it helps to keep the skin around my stoma clear. I also change my bag every four days (earlier if I start to itch.) I tried using sticky barrier strips to fill in my skin creases, but they swelled when exposed to moisture and blew the barrier ring right off my skin causing a blowout. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Rectal Abscess Nightmare!!! When will it heal?
S srthomas21
UCHENNA ❤️
Stormwatch I still have an accident at night now and then but no leakage. I am still on both antibiotics. I'll probably be taking them until a better solution comes along. [ more ]
Stormwatch Listen. I got diagnosed with irratractible pouchitits in 2000. Tried every antibiotic. Every single clinic I went to. Remicade, entyvio, everything I tried. I had a fistula so huge between my Anus and Scrotum that when I got it lanced, the surgeon was legitimately concerned. I was getting abscesses lanced twice a month. As of today I have been 90 percent better for 1 yr. Firstly and most importantly, my intestines were not absorbing the antibiotics. I randomly started chewing them into... [ more ]
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J-Pouch ForumsHelp! Need advice now!
leaking
I Ikciv
Scott F Given Jan's observations, have you experimented with soluble fiber, to try to find an optimal dose and type? [ more ]
Jan Dollar Sphincter damage is tough. Not much can be done other than thickening the stool to reduce leakage. I am surprised you've put up with it for so long. Ileostomy or continent ileostomy (Kock pouch or BCIR) is pretty much the only solution. There is an artificial sphincter implant, but it has its own set of risks. It is mostly used for urinary sphincter replacement. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Gastrazyme
Snoopy007Snoopy007
Snoopy007 Thanks Jan for your time and research. [ more ]
Jan Dollar I tried to find any literature on any actual research on this product, and cound not find any. One ingredient (S-Methylmethionine, which is an amino acid, and also called vitamin U), is the ingredient in cabbage juice that is supposed to be so great. All the other ingredients are vitamins and food extracts with the intended purpose of promoting a healthy digestive tract. I could find no evidence that it does actually heal inflamed ileal mucosa due to a disease other than peptic ulcer. Lots... [ more ]
jeane No but thank you for this post. I will mention it to my GI when I see her and can post results. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bloating cramps
MN marc nolan
Angie Wilson Mrs. P - yep - it can and does consume you. I had some really good years with pouch - had it for 30. But the last 7 or so have not been good. It's not all bad, but it is a constant effort to just do the simplest things...it becomes so much easier to just stay home and find activities at home to entertain oneself than to fight the battle of going out....I mean - going out to dinner with friends - forget it- I'd be miserable within about 3 bites of food. And so it goes... [ more ]
Mrs P Oh my gosh. I can so relate. I've had my pouch for 16 yrs. Pouchitis on and off. Recently I've had so much gas, pain and cramping. I'm going crazy. So hard to focus on other areas of life, this is consuming me. [ more ]
Angie Wilson I love that reply Chris - I used to have to do something similar. Then, had a surgery go wrong - and had a full "open up the old fashioned way) surgery to fix that - well, that surgeon really went after adhesions, etc. and while it was a terrible experience, I can now get rid of gas (almost) always without doing contortions! I did them for 20 years - also got on my stomach and pushed my hands into gut and pushed it around and out! Only people on this site would get it. Gas is the nemesis of... [ more ]
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J-Pouch ForumsHelp! Need advice now!
In between surgeries 2 and 3
SW Sharon W
Sharon W Krah, thanks so much. I had the flex sig yesterday. Now I guess a pouchogram. And if that's good then we will schedule takedown. I am still having a lot of leakage. I feel like it is getting worse but I guess I'm the only one worried about it. Thanks I know after takedown it will be a new world. And I will be out of work for awhile. [ more ]
KRAH I don't get on the site alot, but your post caught my attention.. please take your time to heal. I was off work for 6 months.. it took about a year to get back to about 100%. I had some issues like yours where fluid built up and while I had the bag before the take down..I had leakage also.. it never really subsided unless I would 'bear down' a bit and the fluid would drain. You will need time to still heal post takedown..and your body has to adjust to a new normal. After time, it gets... [ more ]
mamaswans Well, shucks! I was hoping you had gotten better! Hopefully you'll find something about at the flex sig but until then take care! [ more ]
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J-Pouch ForumsGeneral Discussion
Shen says this is "normal" ??
PouchomarxPouchomarx
Pouchomarx I questioned it several times before my first pouch in 2008 and prior to this one being redone. My sister has Crohns. Remzi and Shen have said numerous times they have never suspected Crohns in my case. [ more ]
jeane I give you credit. I have so many issues with mine now. I'm afraid to do the redo for the same reasons you are mentioning. Did they ever question crohns before redo? [ more ]
LORI726 ❤️
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J-Pouch ForumsPouchitis
Wondering about probiotic diet
J J9Pouch
Kimandor Janine, I see a ND regularly and I have always used Wild oregano oil and Grapefruit seed extract for antibiotics. I also use a probiotic from Dr. Dadamo (blood type diet) who makes specific probiotics for your blood type. I have seen good results taking 2 capsules 2x a day. I feel if we constantly take cipro or regular antibiotics it will always distrupt our delicate GI systems bacteria. Kim [ more ]
CTBarrister In an effort to boost my natural probiotic consumption, I had two sauerkraut meals this week, one with kielbasi, the other with pork. I bought a new sauerkraut brand I never tried before, called Saverne. It was quite good, made with craft beer and a little on the sweet side. I Hungarianized the sauerkraut as I had seen my mother do many times, by adding a dollop of sour cream and paprika to it, and then the meat, and letting it all simmer together. It's very good - and a truly underrated but... [ more ]
J9Pouch Thanks, Sharon! I definitely suspect hormones, and was *so* hoping I'd go back to "normal" after getting the IUD removed. I think you're right, I'll just have to be more diligent of watching myself when I'm in that mid-cycle danger zone. I just went on cipro for the 2nd time and it helped immediately, but I don't want to have to take it every month if I can help it! [ more ]
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J-Pouch ForumsGeneral Discussion
On Mesalamine
GweedeeGweedee
Gweedee Right now im on cipro and mesalamine sepositories for inflammation of j pouch and rectal cuff. Had a scope done May 17th and they took like 12 biopsies... [ more ]
Jan Dollar Are taking bowel slowers or thickeners? If so, you probably should reduce or stop them. If the mesalamine is doing its job, you may not need those other things as much. Jan. [ more ]
Gweedee Well i was wondering because I find it very difficult to have a bowel movement since i started... i have to force a lot to get just a little bit of stool out... [ more ]
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J-Pouch ForumsOstomy & Skin
Fecal enemas for diversion colitis? Anyone tried or heard of this?
SaffSaff
AllyKat Saff, I did the Entyvio before reconnect to make sure it was working. See my signature, I've had multiple horrible surgeries and lots of really bad side effects from meds and surgeries gone wrong. I'm a Drs nightmare. anyway, this second takedown was the easiest thing I ever went thru. So much better than having to remove my pouch. Yes, I'm on a bio but I've learn to accept that something is missing in my genes to warrant it. This is a new drug that only targets the gut so side effects are... [ more ]
Saff Hey Allykat, Yes reconnection its definitely an option - but for me personally, I don't wish to risk multiple surgeries.. I had such a bad time with the Pouch so there's a fair chance it will be similar 2nd time around. If I'm going to do more surgery I think I'll just limit it to the one - pouch removal. I think I'm just going to gather my strength, and get off prednisone before I do it. I'm glad entyvio worked for you.. [ more ]
AllyKat Um? Why don't you just reconnect? I had this issue and actually the fatty acid enemas worked to a certain degree. I was then put in Entyvio and my pouch pretty much cleared up by takedown. It been fine since. Ps I did try fecal transplant with my son as a donor when I had pouchitis but it did nothing for it. [ more ]
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J-Pouch ForumsGeneral Discussion
For those that had your J-Pouch removed...
I ian337
Saff HI Ian, I have diverted pouch and end ileo. I got diverted 6 years ago. My life is definitely improved without the pouch. Usually pass mucous every day - for the first 4 yrs this wasn't a big deal. Although the last year or more I have increased pelvic pain and discharge from the pouch - from diversion colitis. I am currently on the fence about pursuing surgery to have the pouch permanently removed. The discharge is tolerable, but the pelvic pain is the annoying thing as I take more pain... [ more ]
AllyKat I had my in with a ostomy but developed diversion pouchitis. so it was either take it out or go on a bio drug. I choose the bio drug Entyvio and hope this will stay working to avoid another surgery. [ more ]
Mysticobra Your welcome. I don't think people with Pouches that are doing well come in here. I wish they would. I wonder how many pouch surgeries are performed a year and what the success rate is? I wonder if it is even kept track of. I wish mine would have worked. But I tried and it was definitely not for me. Looking back I see that now. I am in a good place now. No regrets. I wish you the best with yours. Richard. [ more ]
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J-Pouch ForumsPouchitis
Entergam
M Madi78
Madi78 The Enteragram is helping me with my pouchitis. So glad my Mayo Dr. Talked me into it. Been on it 6 weeks. [ more ]
AllyKat I tried it but it did nothing for my pouchitis . I'm glad it's working you some of you. I believe the packaging says it's used for IBS. Perhaps your experiencing IBS of the pouch and that is why it is helping? [ more ]
deweyj very interested in this, as I had heard they were trying this for pouchitis. but when I asked my GI who is relatively research advanced, she kind of waved me off, questioning the value of food type products. good to hear some positive stories, maybe I will insist we give it a try. surely it must be better than popping antibiotics. also curious had any of you tried VSL#3? I tried it for a month and saw zero benefit, similar fail with a shorter course of Florastor. [ more ]
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J-Pouch ForumsOstomy & Skin
Pouchitis/ diversion colitis and arthritis
SaffSaff
AllyKat I'm using Entyvio and it's working for my pouchitis. I almost lost my pouch. Had to go back to a ostomy for a while but have been reconnected again. Check it out and good luck to all [ more ]
Saff Hi Liz, yes it seems like a lot of us have various forms of athritis... From my research it seems that medical world are still trying to work it out ... the main correlations seem to be between genetics and gut bacteria ... The research in this area is really growing so hopefully we know more soon. My arthritis started several years after taking prednisone so I'm not sure if it's linked .. [ more ]
Ljz I, too, developed arthritis after jpouch surgery. Actually, I was on heavy doses of prednisone shortly after takedown due to Cuffutis and bleeding, and completed a 10 month taper to get off of it (Some setbacks in between), and noticed the arthritis at the end of taper. Been off Prednisone completely for 3 months now, and still struggling with arthritis. My rheumatologist prescribed Sulfasalazine in February, and agreed to increasing it a week ago (4 tablets of 500 mg.each) but still... [ more ]
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J-Pouch ForumsPouchitis
Entecort
K kbach
AllyKat Pretty much immediately when I tried it [ more ]
CTBarrister Remicade was necessary because my annual scopes showed that while the other meds (antibiotics, entocort) were treating the symptoms, the inflammation was not getting better. Since I had dysplasia in my colon and the rectal cuff is left in when they perform the surgery, inflammation isn't a good thing. It's generally not a good thing but the preoperative diagnosis of dysplasia in the colon makes it an ever bigger concern. The Remicade which I started November 2015 cleared up the inflammation... [ more ]
shaney ctbarrister, Glad to hear that you are doing so well. Just a curious question, why Remicade? are you still dealing with crohns? You are happy with your j-pouch? was a good decision for you? I will be having surgery soon that will end up with a j-pouch,,,,,at least that is what I am leaning towards Thanks for the help and info [ more ]
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J-Pouch ForumsGeneral Discussion
Weird question
Sherri FriendSherri Friend
cas ❤️
CTBarrister When I had the problem of spasmodic pouch/excessive motility, which was shortly after takedown, I did have to take levsin before each meal (30-45 minutes before meals) and this completely stopped the burst of bowel movements after eating. As time went on, I found that I didn't need to. My surgeon told me its excess motility of the shortened GI tract and it sometimes gets out of whack. He knew exactly what to do. Since the mid 1990s things mostly calmed down and it's rare that I will get that... [ more ]
Sherri Friend CTBarrister, YES, I do have frequent bowel movements after meals. I will try the Levsin...I have some on hand. Do you take it before every meal? Thanks for your input! [ more ]
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J-Pouch ForumsK-Pouch Korner
anybody increase the size of the holes in the catheter?
J JLH
Michael Jenson ❤️
NoColonStillRollin Hi Janet, Was wondering if you've found a catheter that works for you? I've had my BCIR for about a year now and I still can't find a catheter that does a good job without causing too much bleeding or damage. Also, just like you I had trouble keeping my output the right consistency until I found Werther's Sugar Free Caramel Chews. 1-2 usually doe stye job and keeps things quite loose. The whole grape/prune juice trick was making me too nauseous! Anyways, hope this helps. Xx Avery [ more ]
skn69 Janet, What I meant about peanut butter (or almond or cachew) is that I eat it for any meal and replace just about any protien with it (for me it is both a fat due to the high calorie count and a protein as well as a sweet treat...it covers all bases with me. I have found 2 not-so-kosher tricks that my doctor agrees with (and laughted his head off when he heard them)...I use Alli (sp?) the fat reducing med (OTC) that separates a part of the fat in your food and isolates it so that it isn't... [ more ]
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J-Pouch ForumsK-Pouch Korner
Bleeding ulcer in K-pouch
Art MomArt Mom
NoColonStillRollin ❤️
NoColonStillRollin Hi Art Mom! I'm just now seeing your reply above and was blown away by how many things your daughter and I have in common. I saw you had mentioned your daughter is planning to move to LA. I actually live in LA myself and just recently made the move out here last year. Has she made the move yet? How is she doing? I actually use to be seen by the team at Cleveland Clinic as well but it was before I moved to LA when I still had my jpouch. I'm now seeing a great team at Cedars Sinai here and... [ more ]
Art Mom Avery, I hope you are doing well and have a knowledgeable doctor you can go to when needed. This last hospital stay illuminated our need to stay in touch with Cleveland rather than trust the experience of our team here in Michigan. Daughter has not been in hospital since, though she has times of feeling quite poorly. She does not review these forum or use site. I wish she would. She is finishing her BA degree this term and she doesn't like to dwell on her health. She is planning on moving to... [ more ]
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J-Pouch ForumsGeneral Discussion
Over one year post take down not sure; not sure if I'm in the right path
SolomonSealSolomonSeal
Mysticobra My pouch removal recovery was just like yours. As soon as I was well... Back in the world.... Because it takes a couple days after a surgery like this.... I knew it was the right thing to do. Now it took another month to come to terms with the alien sticking out. It's not normal. But I had to just strip off the appliance and get in the shower and that was the moment I was set... comfortable with it and knew I could do it. I was so happy at that point. I was actually proud of myself. I had a... [ more ]
SolomonSeal Clever, That's just how I felt with my temp loop. I also had some bloody mucus though. It doesn't mean that it'll necessarily be that way for you. I wish you the best. Jill, your posts are inspiring. Thank you so much, I may message you after my consults. I'm seeing Shen next month, and my surgeon (and another different surgeon) shortly thereafter. I will certainly update. [ more ]
JillM Had my j-pouch removed in 2003 for exactly the same reasons and have never looked back. Love my end ileo. Have had two babies. Work full time. No drugs. No diet. No lifestyle restrictions. Even recovery from my pouch removal was better than any other surgery - my body didn't like the j-pouch and the minute it came out I knew it was the right choice. Within 2 weeks of removal I walked a mile on my own. 4 months after I did a 7 mile hike to Ramona Falls at Mt Hood. 8 months later I went... [ more ]
See all 13 replies...
J-Pouch ForumsPouchitis
Lactulose?
FM Former Member
Kimandor Definitely don't need that in my life. [ more ]
CTBarrister Lactulose is a prebiotic, not a probiotic. It's an indigestible sugar. I have taken it and I find it to have a powerful laxative effect on me. Be careful with the dosage because it will really make you crap a lot. [ more ]
Kimandor Hi, I've had my j pouch since 5/14 & many things have been tried. I don't know what lactulose is but I have controlled gas with probiotics that are for my blood type by dr. Dadamo & & liquid probiotic from my ND. Also I swear by 1/2 tsp of pysillum husk powder & 1/2 tsp of slippery elm powder before you eat or when you have loose stools. Originally you might experience gas but as you take every day the stools form, digestion slows down & then gas disappears. I also never... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Swimming
ManchesterManchester
Hermione I had a stoma for 15 years and went often went swimming both at home and abroad. I generally used a 2 piece appliance and would use the smallest beg possible for swimming and then just change to a larger bag after but did not have to change the base plate - you can obviously get small 1 piece systems as well. The smaller bag is more discreet. I am not sure if you are male or female. I am female and had as per the previous post a pair of swim briefs with internal pocket but would also look... [ more ]
Lambiepie There are ostomy swimsuits with pockets into which you may put your bag. Or you can wear a pair of shorts over your swimsuit. Some people wear special tape over their barrier to ensure that everything will stick well while in water or while sweating - A company named Brava makes them. It's been noted that cold water actually helps the existing barrier to stick to the skin better so you won't necessarily have to change your appliance after you get out of the water, but you can if it would... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Vitamins, meals and weight gain
R Ronnee
skn69 Ronnee, The k pouch is the original pouch. It was made with a one-way, no reflux valve and placed on the abdominal wall (like an ileostomy which it was meant to replace or be an alternative for) and has a tiny stoma exit. You intubate with a catheter to empty it out. A few years later they took the idea a little further and decided to make the same pouch using the natural exit meaning a J pouch...some people went strait to k pouch like me in 1979, mainly because that was my only choice. [ more ]
Ronnee Thank You Jan, It is soooo wonderful to know that I'm not alone with all this stuff !! I do sometimes take vit b12 and I do feel better. I have ulcers in my upper GI track too, so I get nauseated a lot and never hungry, I was soo skinny after all the surgeries, maybe it is my age, metabolism etc... I love that you are so knowledgeable in this , You are right about the cure vs Poison. Thanks again for your information!! [ more ]
Ronnee Thank You Kimandor, I too went through a lot in the hospital, blockages, couldn't eat, to many bathroom trips. But my J-Pouch is the best thing, Had an ileostomy for 3 to 6 months. Never want that again. LOL, I'm allergic to the tape too, big red rashes, not fun. Sorry for what you are going through right now , I pray it will get better for you. Thanks again for your input ! [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Is ice cream jpouch napalm?
I IveKickedIt
Former Member Since I'm lactose intolerant it's pure hell for me. Lactose free ice cream is still a miserable experience though, just not as miserable as regular ice cream. [ more ]
Mark SD I tolerate ice cream well but I always eat either lactose-free ice cream (Breyer's) or take a Lactaid pill with it because of my lactose intolerance. [ more ]
bwils For me ice cream itself is ok. The chocolate is the killer, I just have to make sure it has little to no chocolate. Unfortunately, chocolate is probably the worst thing for giving me the itchy, fiery bottom. [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Butt Burn
NoGutNoGut
JJA I had BB on and off for years. Taking Metamucil wafers or capsule and/or inmodium to thicken output may help. I used Dessatin for years and then calmoseptine. Had an Rx for anusol I used if really bad, along with a lidocaine. When I started using baby wipes that cut down on BB and cream use, but the bidet attachment has been like magic! I am on my second one after 4-5 years, but I use the $200 model of Biobidet and I have WAY MORE than paid for it over time in the savings on creams to treat... [ more ]
KP Just throwing this out there, but a good washlet/bidet works wonders for me when I get BB. Never in a million years thought I'd use one. Just bought the TOTO handy washlet for $60ish. My favorite so far as my first one crapped out after a few years. Cuts down on the need for creams. I only use it at home, but it's enough to eliminate the burn after a few uses. I'm sure people have different ways they use it, but I feel it with semi-warm water, use it after a BM, then dry off with toilet... [ more ]
Mark SD After 24 years I still experience BB. I've found prescription Triamcinolone Acetonide cream .1% does the trick. After reading the posts here, though, I think I'll try some of the other recommended solutions such as Calmoseptine, Nupercainal, and Balmex. It's worth experimenting to find what works best. I had tried A&D Ointment many years ago and found it did not work as well as the Triamcinolone for me. [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
O.. Sweet Precious Sleep...
MysticobraMysticobra
Mysticobra Lambie.... I get up at least once... Most of the time twice.. ... Sometimes really late... After sleeping six hours... Ya... Six hours straight! I can't believe it when I look at the clock and it has been that long. I have no problem falling back asleep. Problem is emptying the darn thing when sleepy. I bad better pay attention or else! Lol. Same as you... I wish the pouch was this easy. Thought it may be but I was wrong. But I don't regret trying the pouch. [ more ]
Lambiepie Having said that, I'm sorry that people with jpouches suffer and lose sleep. If I could have my jpouch without pain and sleep loss, I would in a minute! [ more ]
Lambiepie Richard, I clicked on this post, saw your name and thought, "huh?" Glad to see everything's ok. Like you, I got my sleep back. The occasional emptying of my bag and then right back to bed, but no discomfort. We are very lucky. [ more ]
See all 24 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Anyone Pregnant?
H hishawnny
gen1 Lol that's what I thought too, I actually didn't get pregnant after a year and a half so I was like omg I'm pregnant now out of nowhere! But my pregnancy has been good just normal pregnancy aches and pains my lower back had really been bothering me, but other than that I think my jpouch had improved more than anything, before I became pregnant I actually had to be careful with what I ate because it will cause me to have some blood in my stool but haven't had that issue since I've been... [ more ]
hishawnny I had my first apt on Tuesday. I was actually really surprised it took nothing for me to get pregnant. We weren't really trying. For some reason I really didn't think I could have kids and if I did I thought it would be really hard. How has your pregnancy been? Any complications? Do they say it's high risk? [ more ]
gen1 ❤️
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Whipple
J Jbrown
Chuckus I've had a highly modified whipple...........where are you located geographically? you definitely want to make sure the doctor/surgeon has TONS of experience and also that the after care team does as well, very big surgery Charlie [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
butt burn
L loralie78
DarrenKS One of my strongest and lasting memories from the whole ordeal of multiple surgeries back in 2001 was the discomfort of anal fissures after takedown. I was terrified of eating, knowing I was gonna have to crap soon therafter... I really feel for anybody that is going through that. The ONLY relief I ever found (other than time healing the wound), was to sit in a tub of the hottest water my arse could tolerate, immediately following sitting on the toilet. I would do this until the spasms and... [ more ]
mamaswans I haven't tried Ilex, but I do use Boudreaux's Butt Paste. Goopy, but effective. I wipe with saline soaked toilet paper or gauze. The saline and gauze are left over from hospital. Don't know what I'll do when they run out! My Mom always used Tuck's wipes for her hemorrhoids which are just basically witch hazel... Gotta be careful when purchasing witch hazel wipes... Dickinson's brand set me on fire! [ more ]
Clark_00 I am struggling with this BIG TIME! I'm coming up on 3 months since my take down and nothing is helping. Im down to try that ilex paste that you all suggested. Going to the bathroom has me in tears sometimes and I am not feeling super positive about it. My doctor prescribed me some hydrocortisone suppositories that aren't in yet so those might help. some days are better than others but pretty much for the past month its been relentless and I am bleeding a little mostly just when I wipe. [ more ]
See all 9 replies...
J-Pouch ForumsPouchitis
Can't tell if Cipro is working or hurting
J J9Pouch
Scott F One possibility is that you might have gotten a common viral GI infection or food poisoning while on Cipro. [ more ]
J9Pouch Update - about an hour after posting that I went it was normal! ("Normal" for me these days is small, formed pieces kind of like cheetos.) I've since gone twice more with the same results, now I'm thinking the gas and discomfort is a side-effect of the Cipro and I should just ride it out. But if anyone has input I'm still curious! [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Well water
CredCred
skn69 We have only well water at my friend's cottage up North in Ontario in the Highlands. I never had a problem...But they have it tested regularly. At other cottages that I have been to they boil all of their water before using it. I believe that it is about 5-12 mins. They keep it in jugs in the fridge afterwards. Sharon [ more ]
BillV I live in the northwoods of Wisconsin and our well is 825 feet deep, almost all in granite bedrock (long story!). Although the water has a high mineral content, we have gotten used to it. Most wells in our area are much shallower and have better tasting water. [ more ]
Angie Wilson Bill - great suggestion - excellent. I know there is great well water out there - we couldn't change ours and it was west texas well water (bad water out there) - hated living there. I think you live in Indiana? Illinois? I was born up there and would love to get back that way - the water would be (in my view) much cleaner and better there. Great advice about how to check - excellent! [ more ]
See all 6 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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