Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsGeneral Discussion
need help
magic30magic30
rachelraven Good luck. When I couldn't get anything out, it was AWFUL, and it was an outlet narrowing. Was down to the size of his pinky finger, so had dilations under anesthesia. Been good so far, fingers crossed. [ more ]
magic30 Made it to my appointment day no ER visit. Going sparingly but going. Bloated and funny feeling but not entirely blocked if theres a block at all. Who knows maybe its something else. Hope they can tell me today. [ more ]
magic30 Thanks. So much. Beyond words. Thanks for advice [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
hernia?
P pinky56
pinky56 Thank you Jan. As soon as my coverage kicks in I will seek out a doc.Until then,I will monitor it. Anyone from the Savannah area? New to the area and would like any feedback on surgeons here. [ more ]
Jan Dollar Adhesions are internal scar tissue that can bind your intestines, like rubber bands. If your pain is minimal and the obstructive symptoms mild, you can leave it alone and just monitor it. They wouldn't do surgery unless symptoms were severe. My concern was that here was redness NOT in your scar area. That could mean an abscess or seroma. So, keep an eye on it and watch for worsening symptoms, fever, that sort of thing. An [ more ]
pinky56 Unfortunately right now I am without insurance.Can it wait a while? I'm not sure what a partial obstruction from adhesions means. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Getting used to new pouch
A amberbam
TE Marie If you don't have a bidet I'd suggest getting a bidet sprayer. I have one and wish I'd had it from day one. I ordered mine from Diabeties.com for less than $50 and my husband installed it in 10 minutes. It is basically an old time kitchen sprayer attached to the water supply to your toilet. Each BM I spray myself clean then dab dry with ultra soft or ultra strong charmin. Calmoseptine is #1 with me too. You can order cheaper 3 at a time on Amazon, but you only save about $1 each tube. Also... [ more ]
phonix2g That was supposed to say pouchitis not pouch it is. Stupid autocorrect [ more ]
phonix2g How you are feeling is perfectly normal for how early it is in your recovery . I went through the same thing around the same time after my takedown. No need to get paranoid it will get easier as time goes on. I had my takedown March 23rd and now it is a world of difference. You most likely will see your bathroom trips lessen as time goes by and the pressure subside. I still get that uncomfortable pressure sometimes but its mostly now when I have gas. Are you able to pass gas or are you a... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
"Green" shake recommendations?
A Anushka
TE Marie P.S. I mix my probiotics in after I pour the smoothie from the vitamix. FYI you can buy them used and buy new parts on Amazon. The parts are indestructible but I managed to break one, lol. My husband makes homemade peanut butter in the vitamix too. [ more ]
TE Marie It was for nutrition, not for weight loss or gain. It also has good nutrients for cell growth. I was over weight but loosing it too fast and not getting the right nutrients after my surgeries. My Internist thought I was loosing weight too fast. It's also good for healing. I don't think it gives me gas but you could make it and set it in the refrigerator for a while I suppose. I'd leave out the veggies in the beginning. I have a Vitamix that pulverizes the ingrediants like a super blender. [ more ]
Anushka Thanks everyone for your replies. vstRN, I have been miserable too! I had no clue it would be so hard! I have felt incredibly underprepared. But I am thankful for the small improvements, most recently the gradual subsiding of what was agonizing anal burn the first week out. Have you been tolerating your smoothies since your takedown? I've been afraid to have any drink that's been shaken or blended for fear of air bubbles giving me gas. The gas causes such horrible discomfort and urgency for... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Weight gain and jpouch
DonaDona
Dona I wonder if there has ever been a study on the success and complications after j pouch surgery in relation to weight fluctuations before and after.Extra weight is just bad. Seems like everything these days is blamed on a person's extra poundage. [ more ]
mad hatter Was into weight training pre UC and was up to 210 lbs at 5.9 ½. Post UC ops I ws down to 165. Now after 4 years I am back up to 200 lbs. Can’t say that having or not having extra weight was an isuue. [ more ]
Dona Thanks Jan. my GI also moved away but ironically his wife contacted my husband's business for home renovations on their home that they need to sell. One convo lead to another and I have been able to get advice by phone from him. I told him I would make an appointment to come into the office (1 1/2 hrs from me) to get an exam and schedule tests. He wonders if it is scar tissue. He prescribed anucort as needed, which seems to help. I was just concerned because I remember a friend asking me... [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Flush / retracted stoma
S Solomin
amberbam I had this same problem with my second surgery. There were days that I was having to change my ostomy system 2-3/day because of leakage issues. I went to a convex system with a belt. Remember that some may work better with your stoma than others, so you have to be patient. I know that's not the best advice to hear, what with the irritation at the site and all, but it will get better. There are a lot of products out there. You just have to find the one that works best with your pouching... [ more ]
NJK yes I agree the convex wafer and also an ostomy belt. [ more ]
Pluot Definitely use a convex wafer. Have you consulted with your ostomy nurse? Four days is too long to try to go between wafer changes if you're having issues like this. I know some veteran ostomates will go 7-10 days between changes but twice/week (three or four days per appliance) is the standard recommendation. I know it can be painful to change so you want to do it less frequently but your skin will heal more quickly if you change more frequently. Two-three days would make more sense. [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Weird feeling in stomach
H Hannah_ward_24
amberbam I just had my takedown last month, and I have the same problem in the evening. I end up having to sleep in a semi-upright position either in my papasan chair or on the couch. I'm just praying that this is temporary. I also get the feeling that I have to empty my pouch more when I am trying to go to bed. [ more ]
Lesandiego Yes, last night was really bad for me. Probably because I had ice cream after dinner. [ more ]
Debra My intestines pick up activity sometimes depending on my position lying down! Often I have to sleep on my right side only. I think the cause of mine is adhesions which cause my intestines to get hung up, and when I move they release a little ... but I am not sure! [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
So Now I'm Wondering.....
Mema 1Mema 1
Mema 1 Well that's a surprise - white sugar is fine?? What about carbs, like anything white, bread, bagels, spaghetti, etc. - since they change to sugar after eating, do those things have to be cut out as well, and if so, I'm curious, what does everyone eat? I can't eat very much fruit so that doesn't leave me with very much food other then all proteins? Another question, what about Slenda and Sweet and Low - I would imagine that they would be okay to put into things. [ more ]
liz11 all sugar is not the same. on FODMAP diet - honey, molasses, high fructose syrup, fruit juice concentrates, agave are out. but plain white sugar and true maple syrup are fine. I have definitely noticed a difference with SIBO symptoms following these sugar rules. [ more ]
rachelraven At its base, "sugar" is sugar, whether honey, agave, white sugar, brown sugar, etc., so if you're affected by too much sugar and overgrowth, they're all going to affect it. I'm lucky that I'm not bothered by that. [ more ]
See all 16 replies...
J-Pouch ForumsPouchitis
My GI refuses to give me pain meds for pouchitis!
S Subzeromambo
Jan Dollar Well, one man's meat is another man's poison, I guess! Amitriptyline (Elavil) is commonly prescribed for those with IBS and IPS, and has been effective for abdominal pain related to those disorders. My husband was put on a different tricyclic antidepressant, nortriptyline, for treatment of migraines. He was supposed to gradually increase the dose until the desired effect occurred. It made his mouth so dry he could not speak! He preferred the migraines...I guess it helps some people. Side... [ more ]
PDXDavid Thank GOD! My new doctor just stopped the amitriptyline , which was causing insomnia and wrestles legs to the point it was making me crazy. I thought prednisone was horrible..... it's a walk in the park compared to the Satanic concoction amitriptyline. Gawd what an awful, horrible, drug!!!!! [ more ]
TE Marie My Internist and PCP is the one that prescribes my pain medication. Neither my C/R Surgeon or GI want to prescribe pain medications. My Surgeon told me to take 3-4 ibruprofen. I guess he didn't make it to class the day they said we shouldn't take NSAIDs. I take Norco 10/325 Hydrocodone/tylenol. I suggest you go to your primary care doctor or a pain management doctor for your pain. I have days when I only take 1 or 2 pills and days I need 4. It was explained to me that as long as we use the... [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
Was keeping quiet the right thing to do?
H HLL
HLL Thanks all, I feel better about keeping quiet now. I was up half the night the other night worrying over whether or not I should have said anything. I couldn't imagine how that conversation possibly could have happened and ended well. It's not the first time I've noticed someone else had an ostomy while out and about but seeing the contents was a bit of an event even for me. [ more ]
Breezie I stick to the "Five Minutes/Tools on Hand" Rule. If the person can fix the problem within five minutes and/or with the tools on hand, tell them. Skirt tucked into their pantyhose -- tell, easy fix. Stain on their shirt? Say nothing. They probably already know and even if they don't, there is nothing they can do about it at the moment anyway. Hem coming down from someone's skirt at the office? Tell, they can fix it with a stapler until they get home. Works for me. [ more ]
Jan Dollar Of course, in this instance, plastic gloves would not have made any difference! Jan [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Stem Cell Grown Colons
F Future_Jpouch_Patient
PDXDavid The new 3D printers are being used in amazing medical applications. I would think they would hold more hope than stem cells. Maybe in combination with stem cells....? [ more ]
marriedguy Ok, so I am very rarely on here any longer, but I was taking a lunch and decided to stop by. Its been about seven years since I had my successful K-Pouch surgery. I remember talking with Dr. Fazio at the time, and he purposely left parts of my anal musculature (I don't remember specifics), with the thought that some time in the future a colon could be created through stem cell or other therapy. I don't know where the development stands, but at least a number of years ago, it was on the minds... [ more ]
dgtracy I'm 24 years old, only 2 months from my takedown...if i was give a high statistic number that i would be more closer to normal than i am now..i would 100% do it, now 6 months to a year down the road, after everything with me has settled even more i might change my tune but i have always wondered the same thing about stem cell engineered colons, scientific america had an article at one point about it. [ more ]
See all 16 replies...
J-Pouch ForumsGeneral Discussion
J pouch HELP
L ljk
dgtracy I had my pouch done in two steps..i found the last one was the hardest...having to get used to this new feeling.."training" the pouch to hold things in...still doing that btw, sleepless night..slept great still with my bag but currently i get up at minimum 4 times a night...still working on mine though. [ more ]
Pluot It sounds to me like the people you've spoken to so far are just not very familiar with j-pouches... happens sometimes... I had a whole conversation with my surgeon's PA once about discharge from my j-pouch (not hooked up) and she asked me if it had a foul smell "aside from the usual poop smell"... umm, there's no poop in my j-pouch! Anyway -- I wouldn't do an enema either, at least not without talking to your doctor. If the mucus isn't coming out and it feels like it needs to, that could be... [ more ]
rachelraven I never needed thickeners or antidiarrheals, even with my loop ileostomy. Metamucil made it too thick, and I prefer a bit more of a liquid stool, if I can get it (something someone in the beginning J pouch stage probably would never guess of someone with a pouch, but I'm continent even with pretty liquid stool; always say, Sphincters of Steel!) You may have luck with Metamucil, though, as many need it and find it helpful in bulking up their stool. You can use it with the ostomy, and after,... [ more ]
See all 11 replies...
J-Pouch ForumsPouchitis
Chronic Pouchitis
TD Tomball Dave
CTBarrister Maryam, It sounds like you should be on biologics. My last 2 GIs both told me that if my chronic pouchitis could not be managed through antibiotics, which it has been for 18 years now, I would need to go to biologics as a "last line of treatment". Remicade was specifically mentioned. As Jan mentioned Pepto Bismol is just a brand name on a bismuth subsalicylate product. There are a zillion other companies that make it. If you have a Walmart in Australia they have their own house brand bismuth... [ more ]
Jan Dollar OK, understood. So, the thing is, that even if this appears to be UC, you move on to Crohn's type treatment and hope for the best. Otherwise, what is the alternative? Ileostomy. Not the end of the world, but I can understand your desire to avoid. Jan [ more ]
Memymo Hi Jan, thanks for the reply!!! I don't have crohn's disease or and upper GI issues. I've been tested. I was hospitalized 2 weeks ago cause the pain and other symptoms became unmanageable at home. I have VERY severe pouchitis and they symptoms and pain is associated with that. I had a flexi sig at hospital when I was last there and they said that the pouchitis is the worst I've ever had and Im in need of a stoma. I was first diagnosed in 2006 and have never had a period of submission. The... [ more ]
See all 29 replies...
J-Pouch ForumsGeneral Discussion
Who reads the pouchogram?
P Pluot
rachelraven Agreed. All of the surgeons I work with view all films, CTs, MRIs, other tests, etc., but rely on the radiologists expert opinions for a total report. [ more ]
Jan Dollar I believe they both do. The radiologist prepares the report, but most places these days do digital films and the ordering physician can view the actual films quite easily without physical films having to be sent to him. Jan [ more ]
mgmt10 The radiologist read mine and then sent the report to my surgeon. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Probiotics?
L LisaY35
LisaY35 Thanks for the responses. I appreciate the advice. Makes sense! [ more ]
Jan Dollar I agree. Taking probiotics won't hurt anything, but when you are trying to figure out how what you do and/or eat affects your pouch function, you want to take things slow and make one change at a time. But the first thing is to figure out what your basic function is, and early on, it can change on a daily basis, regardless of what you do! Jan [ more ]
phonix2g You might want to wait a little bit to get used to how your pouch operates. The reason I say that is because when you first start taking probiotics they may cause cramping and bloating and other and effects and you may think your pouch is having issues when its not. I would wait to get your diet right and learn your pouch a little before you start them. This will help you also know the difference if they are helping or not. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Amazing Article on the gut biome
ElmerFuddElmerFudd
Jan Dollar Actually, the article did not specify which 14 were tested in the study. The point was that since probiotics are in an unregulated industry, there is no assurance that any particular brand contains what is on the label. The article in this topic indicated that there was less emphasis on probiotic supplements (few of the scientists took them), and more emphasis on prebiotics. Prebiotics are the complex carbohydrates that are only digested by gut bacteria, and are the various types of fiber we... [ more ]
woodstock69 So which probiotic out of 14 should we be taking? [ more ]
Jan Dollar Now they both work! Jan [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
FAP...its been a year since my son surgery.
L LilMoe03
vanessavy Why haven't they done nuclear tests on the gut to determine digestion issues? I was on an antibiotic recently for small bowel bacteria overgrowth and it made things go through me like liquid. So could be a med as well. mine is mainly digestion and bacteria overgrowth since I had most of my gut removed. [ more ]
LilMoe03 A nurse made a weird comment that had me thinking. During his upper and lower endoscopy she said he had all his pills in his stomach. Then she asked if he has a digestion problem. I said no that i know of. So now my worry is... is this the reason my son has pressure in his anus always and accidents while he sleeps. Cause its not his diet. I have followed all rules. Im starting to think the problem of him is not digesting pills? He takes colestipol . Loperamide and metamucil pills. He took... [ more ]
Chuckus Why don't you stop all the meds and see what happens. Sometimes all the meds cause frquency, etc.... Also be mindful of WHAT he eats too. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
How to best handle long distance surgery?
T tiesto81
Mike H When you leave the CC they will give you a list of phone numbers. I had a small issue and called the number and spoke directly to my surgeon after just a few short minutes. you are choosing the right hospital for this procedure. Mike H [ more ]
Mike H Liz is correct. My first in home nurse knew nothing about ostomy care but after my second surgery I asked the social worker to find my an ostomy nurse and she did. Just make sure that the home health company you choose has a certifiedostomy nurse and the will send one. Mike H [ more ]
liz11 Hospital social workers, including those at CC, generally set you up with a home nurse, not a specifically trained ostomy nurse. I have found home nurses to be completely useless at dealing with any ostomy issues. And all three of the home nursing companies that various hospital social workers have set me up with had ZERO ostomy nurses on staff. With that said... cleveland clinic does have a ostomy nurse hotline number. And if you call and leave a msg, you will generally get a call back the... [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
How often to get pouch scoped?
M mads101
suebear I don't have any chronic pouch problems, pouchitis or cuffitis, so I get scoped every 3-5 years. I did do annual scopes the first 5 years post surgery. Sue [ more ]
CTBarrister The answer I got from my GI doctor is get scoped annually due to the rectal cuff cancer risk, dysplasia or not. Because I had dysplasia, this is a "very firm" recommendation, which he says is also endorsed by his mentor Dr. Bo Shen. [ more ]
Jan Dollar My prep is just tap water enemas before leaving the house (and I also limit my diet to liquids the day before). I don't get sedated (never have, except for a full colonoscopy). I have my scopes every 1-2 years. I have not ever had any dysplasia, but my original diagnosis was pancolitis more than 40 years ago, so my cancer risk is higher. These are good questions to ask your doctor, as the answers vary. There is no one right answer, and it should be tailored to your needs. Jan [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Fluid retention & End Ileostomy
WinniethePoohWinniethePooh
WinniethePooh Fasting labs looked ok.. I do have low Vitamin D levels. I have been having body aches .. lower back and in the legs. Can this be from Vitamin D Deficiency? [ more ]
WinniethePooh Thanks Kathy & Jan Just back from Doc.. He is not concerned. Feels I should monitor sodium intake. Lose weight and exercise more. He pretty much blamed it on the heat. I have awesome blood pressure, he said everything sounded good. He did order fasting labs. So at least it will be good to see how those are. [ more ]
Jan Dollar Having an ileostomy does not protect you from heart disease, so you are smart to follow up if you are having similar symptoms as your parents. Dependent edema (water retention in the feet and legs) is pretty commonly associated with left sided heart failure, but also with anything that can cause heart irritation and many medications. For example, regular use of NSAIDs will cause it. You can wear support stockings, but that just help prevent the swollen ankles. You can take diurectics with a... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Using the bathroom at night again):
M mads101
dgtracy You can sleep a consecutive 5 hours! im still trying to work up to that. Everything i have read on this forum about sudden onset of urgency, sudden change in pouch function points to pouchitis. [ more ]
Scott F The good news is that pouchitis usually responds very quickly to antibiotics. [ more ]
Jan Dollar Sounds like pouchitis to me. You should contact your doctor. Jan [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Weight issues
C cassiecass
CTBarrister Someone was previously questioning the linkage of weight and overeating to James Gandolini's death, but renowned cardiologist, Dr. Chauncey Crandall, says excessive overeating of fatty foods likely contributed to James Gandolfini's Death: http://www.newsmaxhealth.com/M...1&utm_source=taboola "On vacation, Crandall reports, “You eat excessively, indulging in fatty foods, and this causes the blood to thicken. The result is a blood clot, which can rupture, resulting in the blockage of blood... [ more ]
TE Marie Your endo is probably right and your thyroid function might be affecting your pouch function. A year ago my GI at the Mayo clinic said that mine was affecting my pouch function via IPS. Therefore it is important that your metabolism via thyroid function be within the normal range. If it isn't then you are going to have a much harder time loosing weight too. If it is off then your body goes into the conserve mode which makes it store weight too. Exercise does combat conserve mode and speed up... [ more ]
Jan Dollar There is no easy fix, particularly when you have metabolic problems. The weight loss program my husband and I went through was through Kaiser, and the the "crash diet" portion was for quick results, which was very motivating. But, you have to keep the activity level up, otherwise the body goes into "starvation mode" lowering your metabolism. The classes were led by a Registered Dietician and a Diabetes Instructor, so we were taught good daily habits and lifelong strategies. We had to go in... [ more ]
See all 17 replies...
J-Pouch ForumsGeneral Discussion
Anyone taking Pristiq?
M magsroo
Jan Dollar Yes, it is extended release, so you can't cut or crush the pill. You could ask your doctor about similar SSRIs that are not extended release. That might be your better solution, if this keeps happening. If the casings of these pills are building up (so much that you think they are lentils when they come out), this is what is called a medication bezoar. Basically, a bezoar is a wad of stuff that is indigestible that clumps together and can cause an obstruction. Jan [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Please use the report icon to report offensive posts
Jan DollarJan Dollar
Jan Dollar We've got several "sticky" threads that are on a similar note, so I don't want too many up there all the time. I appreciate everyone being alert and cautious. For the most part, this site is very friendly and open. But it is amazing how much havoc a single person can create in a short period. Jan [ more ]
ISeeUC I'd love to see this thread be made a sticky. [ more ]
JeffDC That's the way to stick it to him, Jan. Thanks for trying to keep out people like him. Jeff [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Do you end up feeling normal?
dgtracydgtracy
elegance Having UC for 15 years and learning to live with it was my normal. Two bad flare ups in the beginning and what I call light to medium flare ups through the years and learning to control them as they came along. I was recently diagnosed with High Grade Dysplasia and a choice between having a permanent Ileostomy or a J-Pouch, which brought me to this forum. I have read so much negative and horror stories about the J-Pouch, that I was on the verge of going with an Ileostomy, when my husband... [ more ]
Murray Im into my 5th month since take down and I just went befor a general Military Tribunal to go back into uniform in a Reserve/ part-time job. I have to prove my j pouch won't affect me to much after a month of a 3 month trial all is good. wish me luck. [ more ]
dgtracy Good Lord suebear! your traveling is what i have always wanted to do! in time i def am going to try new things..everything is still so new, making a different thread so as not to derail this one about something thats been bothering me for a couple weeks now but when its all said and done i want to start working out, walking/running..etc and hope to be in a healthy enough feeling that in October i want to go on vacation somewhere, just for 4 days or so. [ more ]
See all 14 replies...
J-Pouch ForumsHelp! Need advice now!
5 months out TD Whats best to make this j-pouch last
D daviwyat
rachelraven Good question. I've had mine for 22 years. I have had relatively few problems in all those years. I don't think I've done anything particularly different than act normal with it (ate anything i wanted). I only go about 3-5X a day, though I eat slightly healthier than average overall. I took no meds, and still am on no prescribed meds, though I've had a few issues these past few months, and that could change some day. I don't think there's any secret; I think a lot is personal trial and... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Dr. Shen
P Pkitty
Pkitty Yeah I know he sees people with colons - I am just wondering if he will be as creative and aggresive in finding ways to save the colon as I hear is for saving the jpouch [ more ]
vanessavy He sees people with colons. One lady in the waiting room to seem him for just Chron's. [ more ]
NJK I have never heard of anyone going who still had a colon...but he is a GI...try it...if he can't help he can at least refer you to a wonderful CRS. [ more ]
See all 3 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Fistula question
V vstRN
vstRN I have been checked out for crohns several times - no sign of it thank goodness. My fistula started as an abscess from severe cuffitis. Haven't had many symptoms still so hoping, praying I am in the clear. Maybe to good to be true.. [ more ]
NJK my symptoms pop us right after my period. it comes and goes. it could be a peri anal fistula or just a tiny one that plays peek a boo. have you considered that you might have crohns [ more ]
vstRN Thank you Rachel. My symptoms actually seemed to have calmed down a bit today (who knows though!) but I am still going to ask for an MRI. Ughh..... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Passing Gas
P phonix2g
Jan Dollar Funny, but I never thought of the inability to pass gas without some stool coming along with it as something going wrong. I just assumed it was part of having loose stools. It might have been a big issue for me if it sent me to the can constantly, but it hasn't. I suppose it is another one of those variable things... Jan [ more ]
phonix2g Well that was the purpose of my post because I hear a lot more people say they are unable to pass gas than people say that they can. Its nice to hear positive discussions on this site than just things going wrong. This is for the people that are considering jpouch surgery or are early in the process and nervous about just giving it a shot. So toot toot toot away my fellow jpouchers. [ more ]
tiesto81 This is pretty encouraging to hear. I have to be honest, if I couldnt pass gas normally with a jpouch, it wouldn't be the end of the world for me. I very, very rarely pass gas with UC as it is and usually save it for when I use the restroom since I often don't know if it'll be more than I expected, so to speak. [ more ]
See all 6 replies...
J-Pouch ForumsOstomy & Skin
Coloplast sucks!!!!
EricEric
Lynne2 More sage wisdom passed along by Liz11. . . Maybe you should start a consulting business for people transitioning to life with an ileo. Your description of what goes on when sent home from the hospital matches my own experience exactly, yet it didn't occur to me to search beyond Hollister. Sounds like Coloplast could be a good fit. I am going to be on the phone Monday morning to Coloplast and others, plus I need to see if I am restricted by what my insurance covers. Thanks! [ more ]
liz11 I love my coloplast sensura setup. Sorry it didn't work for you eric. every manufactures' adhesives seem to be so different. So finding one that works for you, sticks, doesn't cause allergic reactions is so important. Let alone hoping the overall system is one you are happy with - due to active lifestyle, size of bags, cloth backing, how you were your clothes, etc.. It is difficult as we are sent out off those hospitals with whatever preferred supplies the hospitals use, but then it is up to... [ more ]
Jan Dollar Wow! You guys have my utmost respect and awe. You seem to have been able to sort through all the different products and find the "one" system that works best with your specific ostomy. I guess it is quite a lot like the j-pouch, no real rules, just guidelines, and it all boils down to individual tastes, tolerances, and fit. I only hope that if and when my time comes when I need an ostomy, I can adapt as well! You guys give me hope and reduce my fear.... Thanks! Jan [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Bumps/Rash
PH playin hooky
CTBarrister If the rash is a yeast infection and the bumps are warts, putting Desitin or any barrier cream on it is the absolute worst thing you can do, and feeds the fungi and viruses like Miracle Gro feeds plants. Go to a dermatologist and have the rash scraped and the sample looked at under a microscope. The bumps could be warts. A competent dermatologist will make a diagnosis on both in under a minute after visual inspection and the samples are examined. [ more ]
squid381 try neosporine cream, [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
could augmentin have caused pouchitis
K ksmarisa
Jan Dollar I would take it twice a day. S. Boularii is not affected by antibiotics. Jan [ more ]
ksmarisa Good evening all-- I spoke with the GI doc. She started me on flagyl, and I already feel better, at least in regards to the watery stool. I want to stay on top of the probitics. I bought Jarrow s. boullardii. How much should I take and how should I time the doses with the probiotics and flagyl. Got to get off the antibiotic vicious cycle! Thanks so much for the feedback! Kate [ more ]
TE Marie Flagyl gets rid of my c.diff. Augmentin is one of the antibiotics my GI suggested using for my next time for pouchitis. I get c.diff and can't take cipro for it as I got it once after taking cipro. I have neuropathy so he doesn't want me to take Flagyl any more than I have to. One of the side effects of Flagyl can be neuropathy. Sounds like we all can have some different side effects from antibiotics. Also it is my understanding that you might get a false negative for c.diff until after... [ more ]
See all 7 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Tampons and rectal discomfort
P Pluot
NJK this is normal. the inflammation will go down and it will feel normal again given time. [ more ]
tammykathleen I totally have the same experience. It's like the angle changed. It's the same way with anything that happens to be down in that region... I actually got the IUC (Mirena) because I was highly anemic anyways and the loss of blood every month didn't help, plus dealing with my period became a whole new can of worms with the inability to use tampons and the flare that would often start. [ more ]
skn69 Hi Liz, Yes, way back when, when I still had a period ( ) I used to feel 'heavy' back there (and I no longer have a rectum!), felt like a 5lb. bag of jello sitting in there and rolling around whenever I got up to walk or move around...It also felt like my uterus was going to drop out of my body but maybe that was just me ! I kind of got used to it and recognised the feeling...pre-period was achy-breaky-back, heavy Barbie-butt, sloppy-floppy uterus...fun! (I also found it much more difficult... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Squats
kathy smithkathy smith
NJK We have inflammatory bowel disease...it is an disease of the immune system... it has nothing to do with how we use the bathroom. People around the world squat to bm and that does not lower the incidence of UC or crohns disease. [ more ]
dgloria5 I recived the squatty potties, I really can't say theres any difference for me as I have no problem going. For people with a colon it might just help and if they are constipated. So far in two days I can not say theres a difference, maybe my pouch is positioned at a little diferent angle. [ more ]
dgloria5 I ordered 2, one 7" and 9" Long ago I use a small stool for my feet, but after the pouch surg.forgot about it. I remember the little wooden stool being very compfy to use. I'm also having thoughts about how I would sit on the toilet having a BM smoking a cigaret with my feet on the stool.Quit smoking and colon bit the dust, truthfully. When these stools arrive I will see how they work with a J, and let you know. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Ph levels low with no colon?
K KReid
Old Mike,Glenns Dad You should also have blood bicarbonate numbers,where are they. How about urine ph. Old Mike [ more ]
Jan Dollar H. pylori is very common, as is C. difficile. But having the bacteria does not automatically mean disease, as you have to have the pathogenic strain. Oodles of people out there with these bugs, but without any symptoms of disease. So, unless you have a stomach ulcer or gastritis, H. pylori is fairly meaningless. High stress levels are a HUGE factor in overall health. Life is stress, so I don't mean give up your life and join a commune. It is how you cope with stress that matters. If you... [ more ]
KReid One other thing, I did test positive for H.Pylori but no one seems that interested in treating it. I had 5 tests and 3 of the 5 came back positive. [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Problems with hair?
M Megals
skn69 Nice trade off! It must be lovely...I have the menopause, stress and anesthesia (although lately I have all my surgeries done under local...less hard on my system but a bit tough on the nerves)...but it can also be caused by thyroid problems, anemia and anything else that shakes you system up... If any of you get persistant hair loss or no regrowth it is worth consulting a specialist. Sharon [ more ]
Lesandiego My hair fell out 4 months after surgery, but it could be blamed for any number of reasons. 1. Stress 2. Anesthesia 3. Antidepressant (Lexapro) 4. Menopause I threw out all of my medications (I was doing fine without them) and I wore a wig when I went out of the home for 3 months. I used to have auburn colored baby fine hair, but now it is black, thick and CURLY. [ more ]
skn69 Megals, Yup, your hair is a reminder of where you have been, not where you are...So it is kind of a souvenir of horrors past (and horrors present when looking in the mirror!) I had a 5yrs period where I kept having surgery after surgery with barely the time for convalecence in between...I couldn't eat a lot of the time and was undernourished most of the time... I looked like I had come out of 6 months of radiation the first time that I really took a look at myself...and I cried. A lot. I had... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
being followed for dyplasia??
D Durk_344
Jan Dollar Sure, and that is fine too. Sometimes that route is good, if only to give your mind time to wrap around the idea of colectomy. I lasted a good 23+ years with just the routine surveillance (when I was first diagnosed they hadn't even begun using fiberoptic scopes yet!). Then after 20 years my GI started nudging me toward colectomy. I was comfortable just watching it because no dysplasia had ever been encountered. But, I had pancolitis, and even being in remission most of the time, I knew the... [ more ]
Durk_344 Hi Jan Thanks for the reply. I am at the point where I do have to think about whether I am up for surveillance indefinately. The first year of this you kind of just go from colonoscopy to colonoscopy as "due dilligence" or "second opinion". Now I am at the point where if I go onto more colonoscopies I am actively choosing the surveillance route. [ more ]
Jan Dollar Just in case it makes a difference in regard to how you think about it, when it comes to UC and cancer, low grade dysplasia does not necessarily progress to high grade then carcinoma in a linear fashion. Unfortunately, in UC what can happen is you have low grade here then there, then nowhere. Cancer can arise out of the blue in an area that is not even close to where dysplasia was found before. Of course, high grade is most associated with spontaneous incidence of cancer. The reason they get... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Finally good news after 8 months!!!
G Ginabello
Ginabello I had my weekly doctors appt. today I have had random bleeding at least once a week.. I have stopped my heating pad and the last episode was a lot less bleeding..I guess the seton gets irritated because of its location and cuts my skin. My doctor said all looked good and clean and this minor set back will heal itself.. I feel good better than I have felt in months. On another note I have a 16 year old who is now going through some issues and is being tested for celiac disease. She has lower... [ more ]
Ginabello Yes Liz it's a small abscess hopefully it will heal this time around. [ more ]
Ginabello Well My happy moment was short lived..I just got back from emergency after gushing blood poured out of me.. A very scary moment with my poor daughters in the room..I wasn't sure if I was bleeding from my rectum.. Lucky me my surgeon was still at the hospital and saw me.. My rectum was fine and my seton surgery was fine blood work came back pristine( doctors word).He gave me IV fluids and gravol.. I'm home now feeling better and ill see him Tuesday..Rachel my seton is definitely on the side... [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Calling All Experienced Jpouchers
P phonix2g
lablover My mom, didn't have a choice of a jpouch etc. She had a bag for about 50 years. It was either a bag or death. Alot had changed from her experience with my husband's. [ more ]
rachelraven It's been 22 years with the pouch, 33 years without a healthy bowel, so I, too, can't really remember, but I was 19 when I had my surgery, and determined to ignore the fact I was previously ill. I am glad there wasn't any Internet back then (like today), because I had no time to dwell on things, and I just moved forward. While I approve of this site, and what it contributes, etc., reading too much about things and worrying, dwelling on the what ifs, and not trusting your body, can make for a... [ more ]
lablover My husband has had his jpouch for 18 years. He focused on getting his life back (or course there were near blockages that ended up in the er..which of course, focused on that and he had a bout of pouchitis) However, during this time we were raising our son(still are). I think he has done a pretty good job of it. He is my idol the way he has reacted to what has happened to him. Especially the dark days of colitis when he was on steroids and the colitis would not recede. [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Anyone go to Hopkins?
vanessavyvanessavy
lablover My husband went to George Washington University in D.C. [ more ]
tiesto81 Please let me know if you have any luck. I am looking at CC for potential jpouch surgery but would like someone local to deal with for any immediate concerns. I am meeting Dr. Jonathan Efron in early July. I found his info from a few posts on here and reviews on the web as well as being rated in the top 1% for colorectal surgeons. No idea what to expect but maybe worth getting in touch with him to see if he's a good fit? [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Severe bleeding with pouchitis and cuffitis
ClickyClicky
TE Marie Congratulations Clicky on your healthy baby boy!!! [ more ]
Clicky Hi Darcy, I used steroid suppositories while pregnant. My high risk OB said no problem after this issue. I was also on continual antibiotics and found augmentin worked best. All worked out just fine. I was ill and they had to take him at 37 weeks as he stopped growing and I was really struggling, but now he's a big bouncing baby ! Sounds like you need some more knowledgable doctors in this. [ more ]
jeane Darcy, I am sorry for your pain. Just wanted to let you know I took oral prednisone and oral sulfasalazine throughout both of my pregnancies with no problems when I had active Uc. you need to be seen by your Gi. I agree the diarrhea is not good for your body and the pain is something your gi should be able to prescribe to help you heal. [ more ]
See all 8 replies...

Join Us!

Founder, Creative Director & Web Master

William J. Johnson
bjohnson@j-pouch.org

Bill Johnson founded the J-Pouch Group in 1997.

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

Forum moderator and advisor
Jan Dollar R.N.

 

 

 

 

General Disclaimer

 

This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.


Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).

Confidentiality

Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.

 

CCFA

The Crohn's & Colitis Foundation of America,
Philadelphia, Delaware Valley chapter, is located at
521 Bustleton Pike, Feasterville, PA, 19053.
Tel: 215-396-9100


National CCFA headquarters are at,
396 Park Avenue South, 17th floor
New York, New York 10016-8804
Tel: 212-685-3440    800-343-3637

 

Join Now

Already a member? Sign In

Online Now

Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×