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J-Pouch ForumsGeneral Discussion
Stoma site questions
A atwoodt
AllyKat Ugg, it was very painful for about 3 weeks. I had a home care nurse come in the beginning and always took a pain pill 45 min before she came. I'm such a baby I could not do it myself and my hubby helped out after a while. Took a good 6 weeks to heal. Going to have to go thru this again myself in a few weeks as I'm getting reconnected again. Not looking forward. Good luck and be pain free. [ more ]
Spooky It's pretty common to leave the stoma wound open to heal. Mine also healed open. But don't worry, it won't be open to internal organs. My surgeon put a stitch at the base of the wound so that it was closed off. The wound basically then heals from the bottom up. For me, this took about 6 weeks to completely close, and it was then sort of like a scab for an additional few weeks. Advantages to having the wound left open are that there is reduced risk of infection, there is less puckering of the... [ more ]
skn69 I've had 3 stoma sites close on their own. All 3 were left open to heal, and all 3 fortunately did not infect. Basically I had to squirt a mini tube of saline into the wound 2xs/day, swab the area with betadine solution, pack it with clean gauze (as it closes up you use less and less until you can finally just take a shower and use soap on your body but not inside the stoma). I have found with all open wounds that must heal from the inside-out, you need to slowly bring the edge together. I... [ more ]
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J-Pouch ForumsGeneral Discussion
Delete a post
CG copper girl
Jan Dollar I believe that you can only delete replies. The post you are talking about is the topic starter. I can delete the post if you want, but the whole thread will be deleted too. Let me know. Jan [ more ]
CeeeeCeeee I, too, experience this. My surgeon suggested using Citrucel daily and it does help. If I eat and drink like a normal person, I do better! Trouble is......I tend to overdo in that department and pay the price. I tried a course of Flagyl and it didn't make a difference. Best wishes in finding a resolution. [ more ]
copper girl I don't think it's pouchitis as there was no pain at all and when I do have that there is always abdominal pain. I was just sitting or walking and felt myself a leak. [ more ]
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J-Pouch ForumsGeneral Discussion
Preparing for my daughter's 1st surgery
N Neener
skn69 Fabulous news...She is so strong. Sounds like she is doing just great...now for the healing. How are you holding up? Get some rest now that the worst part is over...get yourself a good book and read yourself to sleep beside her bed (you are probably not going home to sleep...) put your feet up onto the edge of the bed, close those eyes and believe that she in now going to have a much better life. Give her hugs from us all... Sharon [ more ]
CeeeeCeeee What an amazing daughter you have! Great attitude! Best wishes for continued positive experiences! [ more ]
Jim F. ❤️
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J-Pouch ForumsGeneral Discussion
Chrons disease with pouch
J j_stone
Laurie Bradley Thanks Scott - take care! [ more ]
Scott F Laurie- Chohn's is unpredictable. It honestly best not to try. It can stay quiet for a very long time - I have a friend who had a rough time with Crohn's 30 years ago, requiring surgery, and hasn't had a symptom since. If you're doing well now just enjoy that. Your pouch may indeed last you a lifetime, but it came with no guarantee. [ more ]
skn69 I am not sure that anybody can answer your question. Your pouch is made out of your own intestines which were meant to last a lifetime. Mine is 36yrs old (had it done in 79)...no reason why it should last forever. I am hoping that it will last at least as long as I do ! Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Saw the Rhumy
skn69skn69
skn69 Yes, you are right Jan, mine is a combo thing with robaxin and Ibprophene...so I have stopped it...on strait napoxin 2xs/day...don't know if it is helping but it sure isn't hurting (for now). Sharon ps. Rhumy gave me a script for the ethiopath, not sure if my insurance will take it or not but I will try...it gets very expensive very quickly (65€/treatment)... Being sick is so darned expensive...please stay healthy! [ more ]
Jan Dollar Scott, I think the robaxin she takes. Is a combination drug, not pure robaxin. I take robaxin myself at bedtime, but mine does not contain ibuprofen. I agree with her rheumy- don't combine NSAIDs! Bad for the gut, the liver, and kidneys. Jan [ more ]
Scott F Sharon, I don't think the Robaxin (not an NSAID) directly conflicts with the naproxen. OTOH the Robaxin is bad for folks with seizure disorders. I think one way that activity helps get us past pain may be similar to a "runner's high." The body produces natural pain relievers, and when we push through the pain we get some help naturally. I don't think the activity reduces the inflammation itself, unfortunately. [ more ]
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J-Pouch ForumsGeneral Discussion
Belly wrap recommendations after takedown?
A atwoodt
Jan Dollar You can ask about an abdomnal binder, but it is probably unnecessary. It is sort of like a corset with a velcro closure in front. I used one when I had an open abdominal wound and wanted to hold the dressings in place without a lot of tape. My skin couldn't handle removing tape several times a day. Here is an example: http://www.walgreens.com/store...=prod6152379-product Jan [ more ]
skn69 Although my Canadian surgeon never suggested (other than Montgomery ties a sort of huge band of fabric with shoelaces on the ends that you tie up to keep the midline tight) anything my French surgeon obligied me to wear something that looked very similar to a lumbar support belt. It was very wide, adjustible and had 3 different velcro attachement belts to adjust the support both around the tummy and over the obliques (diagonal)....I usually use it post op except when I have an open wound...I... [ more ]
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J-Pouch ForumsGeneral Discussion
pouchoscopy - pain 8 days post procedure??
M msh98991
Jan Dollar Seems to me that you have bacterial overgrowth (pouchitis symptoms that respond to antibiotics, but without inflammation). The scoping could have triggered a relapse. I'd ask for antibiotics again, but maybe a longer course. I usually get zero relief from gas pain from probiotics, but it won't hurt to try (at least it won't "harm" you even if it does not help the gas pain). The longer younhave your pouch, the more likely it is that you develop pouchitis or pouchitis-like symptoms. Jan [ more ]
Scott F I don't have any problems like that after pouchoscopies. Could it be pouchitis? I can't tell if you've had any recent treatment. [ more ]
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J-Pouch ForumsGeneral Discussion
What constitutes CD of the pouch?
AllyKatAllyKat
Jan Dollar All true, but I can understand your dilema, Ally, because you are diverted and wondering if pouch salvage is possible for you. Unless they find granulomas in biopsy (diagnostic, but not common), they have to rely on all the information gathered and which way the scale is tipped. Inflammation at the anastomosis should not be considered a sign of Chron's. Cobblestoning inflammation and/or inflammation that goes into the muscular layers (including fistulas not associated with the anastomosis). [ more ]
Brewbirds Well said CTBarrister! I agree. [ more ]
CTBarrister In my opinion it's not ever definitively determined at all, and whether it is Crohn's, pouchitis, or something else is irrelevant because it's IBD, you have it, and you need to treat it. I have had Prometheus Blood Serum Tests, MRI Enterographies, CT Enterographies, was recommended to attempt (but rejected) the Capsule Endoscopy. All are diagnostic tests. None really prove anything. I had my results reviewed by expert pathologists at Mount Sinai in NYC, on the west coast, and at Yale, all... [ more ]
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J-Pouch ForumsGeneral Discussion
Recent j pouch creation blood in stool
S sally85
mgmt10 Originally Posted by sally85: I've got an appointment in 5 weeks I think the first week of December. If the difficulty emptying gets worse, call and make an appointment for sooner if possible. Five weeks is a long time to be feel uncomfortable like that. And especially if the bleeding continues. Good luck! [ more ]
Scott F The straining is worth avoiding, if possible, as it can cause problems. What happens if you delay using the toilet until more stool accumulates, and (perhaps) you can poop without straining? At Day 9 you could easily be taking those new sensations to mean that you must go to the toilet, when perhaps you can simply delay. The experiment might turn out messy, and you might have some minor discomfort (e.g. cramping that passes), but it might be more constructive than running to the bathroom so... [ more ]
sally85 Thanks so much marianne that's put my mind at rest, so scary seeing blood again :/ I've got an appointment in 5 weeks I think the first week of December I'll definently ask them about a structure seems like that's what could be going on, thanks again xxxx [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch and fissures
J judyk
Twilight My surgeon gave me Botox injections for my fissure in August and it has seemed to work. The injections were also very tolerable, very little pain. [ more ]
JLH I think the Nefedapine had limited effect because I had episodically used the .2% for several years and became immune to it. When the nurse bumped me up to 2% the med was very effective, but did not completely heal. This was about 5 years into the fissure, maybe longer. It it is possible to have surgery, but I've heard too many horrors and declined. Then the humeria cured it. That was several years ago and it hasn't returned. But expensive. I'd pay again. Baths hs are very helpful. Good luck... [ more ]
judyk Thank you! I have been doing the sitz baths regularly. The ointment only worked "so much" because of how many times you go to the bathroom, or for some other reason?? I have an appt with doctor on Tuesday, will ask about the Humeria. [ more ]
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J-Pouch ForumsGeneral Discussion
Big stomach
Rae26Rae26
sprice33 My stomach stays bloated also. I am a very thin women and to have a bloated belly does not look right. My stomach bloats when I am flaring. I think I agree with Jan. I think eating carbs does cause the bloat. When I ate just vegetables and meat, I did not have that much bloat. But my primary care doctor tells me I need carbs, she was concerned I lost so much weight and I am a diabetic. Dealing with this disease is challenging [ more ]
RHolt Originally Posted by Rae26: So my stomach now matter what always looks big. I eat right and still can't get rid of it. Does the jpouch expand that much? Besides having horrible noises coming from my stomach, does it really need to look this way? After a past C-section and then a total colectomy and hysterectomy, my stomach looks like a war zone. It is not flat, but I am 57 and, although I am not overweight and I run, I don't restrict sweets as much as I should. One of my sons looked at my... [ more ]
skn69 Rae, I have had upwards of 25 abdominal surgeries for everything from a colostomy to a k pouch and an assortment of hernias etc...my midline incision should have been a velcro...it popped open almost every time leaving me with huge scars...that said, I have mostly had a flat tummy other than the 6months post op each time. I walk. I don't mean a short stroll...I walk miles uphill daily (no choice, its were I live)...when I walk I tighten up my abs to help support my back...and that helps to... [ more ]
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J-Pouch ForumsGeneral Discussion
4 months post op reversal... How do u feel
lovedby2lovedby2
Jan Dollar FYI- this thread is well over two years old. Jan [ more ]
aka KNKLHEAD I am very sorry you are having these issues! It would seem as though you can get some form of medical coverage, I hope! While some would argue "Obamacare" is the plight of civilization as we know it, isn't it supposed to help people without insurance or the capability to get insurance? I hope you can get help. "Leakage" no matter how it's defined - fissure, fistula, "small leak," etc., is never good and IMHO, deserves immediate attention. Do you feel your current surgeon/doctor is capable to... [ more ]
Clint Hi, have a j pouch since 1999 and pouchitis just once. After going, I use a lot of toilet paper with water and clean myself good. I use Udderly Smooth body cream(from walmart) on the affected area. I am dehydrated a lot of the time, but try hard to continue drinking as much as possible. I can eat anything I want, but if I eat spicy food I know I will pay for it later. I have constant diarrhea, 7-10 time 24 hrs. I use Lidocaine 3% cream when I burn and that numbs the area. It is an RX... [ more ]
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J-Pouch ForumsGeneral Discussion
Removal or disconnect
M Mark01
Mysticobra I am having it done on November 9th. My surgeon will not leave it in. No reason to. It doesn't work now. It won't work later. Personally. I don't want it. If there is a possibility that it can create urges to go. It's gotta go. I have constant urges to go day and night. I have had this problem.... Along with many others since it was created. I am losing my sanity from it. Richard. [ more ]
JLH mark cruise through the various forums and you will pick up this topic. there has been much discussion on the dilemma--both for and against. in the end it is a personal decision that must be taken within one's own context. I'm in the same situation and have opted for a k pouch. that choice isn't for all, but hopefully it will work for me. good luck, [ more ]
Jeffsmom Mark, that's a really good question. But it is also a very personal choice to make, and certainly not an easy one. I think you have to weigh the consequences of both. And talk to people on both sides of the street. My immediate thought is if you are getting a percent illostomy and there is no possibility of ever going back, then remove it because,it is diseased and could cause more problems down the road. But either way, you have to think long and hard before you make any life altering... [ more ]
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J-Pouch ForumsGeneral Discussion
Polyp found during pouchoscopy
H Hope 777
Hope 777 Thanks so much you guys! Makes me feel much better about this. [ more ]
Jan Dollar In 20 years with a pouch I have had a number of polyps found and removed during scopes. Like CT, they were all inflammatory and completely benign. My recollection was that they were at or near the cuff. Jan [ more ]
CTBarrister In my 23 years with the J pouch I estimate about 20 polyps were removed. Most of them were inflammatory polyps and all were negative for anything other than inflammation. I don't recall where all of them were located. On my last, most recent scope in June, they removed a large one. I am on an annual scope cycle due to pre-colectomy dysplasia and chronic, 20 year pouchitis. Annual scopes usually are not indicated without these risk factors. [ more ]
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J-Pouch ForumsGeneral Discussion
WHO Report Links Processed & Red Meat To Colorectal Cancers
CTBarristerCTBarrister
clz81 Sadly, for majority of people in America, I don't think people are going to change their eating habits regardless of what they hear or know on this topic (as this isn't new news). Personally, since they finally started making nitrate-free versions of pretty much all processed meats (lunch meat, bacon, salami, pepperoni, sausage, hot dogs), that's all I buy now for our family. It cracks me up though how they package these nitrate-free options for the same price and taste and most people will... [ more ]
Spooky I agree with Jan and others here, in that none of this information is really new to me. Not too many years ago, I recall that a report came out warning of the dangers of charred meat - essentially BBQ'd and grilled meats, as well as a general warning to avoid cured and processed meats. Bacon, in fact, was considered carcinogenic to the point that it should be eaten at most 2-3 times per year. So again, none of this information is really new or different than what I've read before. What I... [ more ]
CTBarrister I suppose that if one is gorging oneself with sausages with nitrates and bacon cheeseburgers, heart disease, high blood pressure and high cholestorol will be competing for attention with colorectal cancers. I wonder, however, for those of us who already have some risk factors like dysplasia and chronic cuffitis, how much a modest ingestion of sausages and bacon will increase the risk further. What is the risk calculus and how much is it augmented with each bite of bacon, each mouthful of... [ more ]
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J-Pouch ForumsGeneral Discussion
Bowel Obstruction
M maddie18
clz81 Oh my goodness, that is a LOT of surgery!! Wow, no, I have not endured that much. I had laparoscopic J-pouch surgery (2 step) in 2010. Then I had laporascopic surgery in March 2015 to remove some adhesions. Because they did it that way, they missed a couple adhesions very low right by my pouch, and I ended up back in surgery a week later. They had to open me up that time. As for diet and everything else, I'm back to normal. I was in the hospital for a month in March due to the surgical... [ more ]
maddie18 That makes a lot of sense to do the surgery before you're very weak why the surgeon has suggested that to me. Is your diet gone back to normal after six months and also wondering How many abdominal surgeries you've had cause I've had about eight and I'm told by some surgeons that they may not be able to close me up again [ more ]
clz81 Hi Maddie, I've been in your boat. In a nutshell, if an obstruction resolves itself within a few days (hospital, fluids, pain meds, etc.), there is no need for emergent surgery. If it doesn't resolve on it's own, then there really is no other option. To your question, when is it time for surgery? Well, that's really up to you with some guidance from your surgeon. I had 5 obstructions due to adhesions in less than 2 years with hospital stays as short as 1 night up to a full week. When the 6th... [ more ]
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J-Pouch ForumsGeneral Discussion
In hospital for reversal surgery!
S sally85
JLH sally i too was in a bad place with loss of control. it is simply miserable and i am so sorry that you are going through this. pt really made the difference and then i practiced at home. the PT vs. home exercises is helpful as you get hooked up to a bio-feed back machine, rather a program on the computer and the visualization helped me focus the muscles to relax/tighten as needed. i'm not proud of this, but i went through three PTs prior to getting one that really knew her stuff and was... [ more ]
sally85 Thanks renee i really hope so to, thanks JLH I've been trying to do pelvic floor as much as possible really keeping my fingers crossed it will help, sometimes when I do the exercises I feel like I need to run to the loo but I'm sticking in there Thanks for the help guys really appreciate it Sally xxxxx [ more ]
JLH maybe it is too soon to consider this option, but I got relief from similar symptoms w pelvic floor PT. [ more ]
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J-Pouch ForumsGeneral Discussion
Cleveland clinic surgeon recommendation
LF linda flamisch
Fight like a girl Hello...Dr Lavery saved my life back in 1989!!! To this day I consider him my hero. I now go to Dr. Ashburn in Cleveland Clinic because of emergency situation that arose this summer. She is fantastic too. But one always needs to remember that our bodies are all different and what may work for one may not work for another. With that being said...Cleveland Clinic is top notch! [ more ]
LauraLee ❤️
maey2462 Dr. Lavery is my surgeon at CC and Dr. Shen is my gastro...they are both great in my opinion. I have been seeing them for 20 years. Just had a seton put in on Thursday with Dr. Lavery, I trust him fully. [ more ]
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J-Pouch ForumsGeneral Discussion
help for butt burn and slow down diarrhea
C Clint
Clint Sorry for you. Lidocaine 3% and morphine give me the best relief and quality of life. At this stage of my life, I am satisified.------------- [ more ]
dave hdave butt burn liqued bandage if you can stand the pain. david habeski. [ more ]
jeane Clint..Thank you for this info. I am so tired of taking cipro to slow down my movements and heal the fissures from constant butt burn. I am going to talk to my GI about this when I visit next. Cipro is the only thing that calms my BB and helps heal the fissures which can be so painful that the pain disrupts my sleep and often brings me to tears. [ more ]
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J-Pouch ForumsGeneral Discussion
Cuffitis and cancer
HockadooHockadoo
CTBarrister From speaking to my own GI, scoping frequency is increased if there is serious chronic inflammation or a history of dysplasia in the colon, because those two pieces of information increase the cancer risk from low to something higher than low. Unless you have these two risk factors going on, scoping frequency isn't going to matter. I am on a one year scope cycle as a result of these two risk factors, and due to my Remicade treatment, I will be on a 3 month scope cycle to determine if it... [ more ]
Hockadoo Scott and TE Marie - Thanks for your responses. To clarifty. I'm hoping to get a permanent ileo in the next 3-4 months at the Clevelanod Clinic. In the meantime, I do wonder about my larger than normal, inflamed cuff. I have not been scoped for at least six months, so I am concerned about what's going on with my cuff regarding cancer. Why wouldn't I want it scoped again? Btw, I had my colon out because my gastro guy found pre-cancerous polyps. TE Marie - Not being a shrink or mind-reader,... [ more ]
Scott F There have been a lot of posts lately about rectal cuff cancers, many expressing concern that is much greater than the actual risk warrants. It's reasonable to keep an eye (and a scope with biopsies) on the rectal cuff periodically, but the risk of cancer of the rectal cuff (even an inflamed one) developing and spreading in any single six-month period is simply not something that's significant enough to appropriately drive any changes at all to your health care. If you're focused on this... [ more ]
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J-Pouch ForumsGeneral Discussion
Ideas for slowing down Bowel Movements
A Airbailey
Scott F deweyj suggests (above) another candidate for the definition of "digestion." If you use the word "digest" to mean "make it unrecognizable in the toilet bowl," then folks without colons are definitely handicapped. I prefer a definition more like "get all of the nutrition out of the food," and most of us are as good at that as folks with colons. [ more ]
deweyj its obviously up to each of us what we choose to eat. I would direct you to the tab dietary guidelines on this site, under the middle information tab. that might help you. personally for me I specifically avoid most fruits and vegetables, roughage scares me. what I have experienced is that high fiber, difficult to digest foods, fly through me and force more bm's than I care to have. and while many suggest low sugar, I have never noticed that to be the problem, of course maybe that's my... [ more ]
dave hdave no sugar david habeski. [ more ]
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J-Pouch ForumsGeneral Discussion
Has anyone gone from Humira to Remicade?
B Brewbirds
Jan Dollar I probably had symptoms of arthritis 20 years before my colectomy, but I did not connect the dots. I was diagnosed about a decade post colectomy. So far no one has suggested Crohn's (not that it would change anything if I was diagnosed with it). Jan [ more ]
Mysticobra I had my worst flare and was on my last leg when I had remicade. I felt better immediately. The nurse said no way... But I could tell something happened. Not to be gross but I had bloody diarrhea for a long time before remicade and after I was pooping a train! Solid long pieces. I couldn't believe it. It was wonderful while it lasted. Sorry if I was gross. I don't know any other way to explain it..... I was so weak sick and wore out before the infusion. Never had or have had any side effects... [ more ]
LauraLee I had Remicade many years ago and it really helped me to control my UC when I used to have very aggressive flare ups. I tried again in 2013 and had a bad reaction, so my GI put me on Humira and I spent a lot of money out of pocket, didn't control my terrible flare up, so my next step was a total colectomy and I'm glad I did it because just reading the side effects of these two biological drugs is really scary. Now, I'm dealing with pouchitis, diahrreas here and there, but nothing compared to... [ more ]
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J-Pouch ForumsGeneral Discussion
Crazy Reaction!
D DeathStalker
DeathStalker Finally found the culprit. Got my blood-work back today and it looks like I've got the "Alpha Gal" allergy aka the "Meat Allergy". I scored a 60 kU/l whereas 3.5 is considered "high". It's the only known allergen to cause a delayed reaction several hours after ingestion. It looks like it's brought on by a tick bite but I also read that Crohn's Disease patients were more likely to produce the histamines too. [ more ]
Spooky This sounds like a severe allergic reaction, perhaps to medication. I myself have had trouble with swelling of my eyelids and lips as well as hives, but it's kept under control by taking Reactin daily. I have thankfully not had difficulty breathing during these reactions. My symptoms developed suddenly after a viral intestinal illness 2 summers ago. I woke up with a swollen lip and inner cheek, and later my eye swelled shut. After that first episode, I had further swelling of the lip and... [ more ]
Jim1980 Growing up, my daughter always seemed to have random hives on her body. She was a soccer player and often took pain killer for her bumps and bruises. Turns out, the hives were an allergic reaction to Advil. We never could figure out what was going on until one day she took Alieve. Her face blew up and looked like the Elephant Man. We had to take her to the emergency room for fear of her throat becoming blocked. If you look at the possible side effects for these meds, hives is always listed. [ more ]
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J-Pouch ForumsGeneral Discussion
How do you know if you have adhesions?
Vicki LVicki L
Hockadoo TE Marie - Thanks for your kind response. My thoughts are with you; hoping for the best. I got my second opinion today. Basically, the doc said it looks like I should get the ileo, but they are not comfortable or experienced enough to do it. Called Cleveland Clinic, told Dr. Remzi now booking into February. So that's about a 3 1/2 month wait. Going to have him take out the whole damn thing because I don't want to worry about cancer from ulcerative colitis of the cuff. Task now is trying to... [ more ]
TE Marie Hi Hockadoo, I understand your frustration. I wish I would have gone this route at least 18 months before I did so. I'm a determined person and was determined to make my j-pouch work. All that did was to make me dependent on my j-pouch. What I ate, where I went (mostly didn't go anywhere), and kept me from having any quality of life. The GI at Mayo's that did my first pouch scope there asked if I had my j-pouch surgery there because he said it was the best looking one he'd seen in 5 years,... [ more ]
Hockadoo TE Marie - I was obviously unclear. I want a permanent ileo. I am meeting Monday with a colleague of my surgeon for a second opinion. I will ask about referral. I'm starting to feel overwhelmed by all this. I go through periods where I wonder if I have really tried everything possible, but I keep returning to J-pouch removal. So hard not to be impatient given what is going on with me. [ more ]
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J-Pouch ForumsGeneral Discussion
Staying hydrated
K Kastuhlm
TrishD I have that problem too. My Dr. said water is not good enough for people like us. We need electrolytes. I go to Whole Foods or Sprouts to get Vega it's a hydration powder to add to my water. It is better than Gatorade (no sugar) and it comes in a variety of flavors. Most health food stores will carry something like this. [ more ]
Jan Dollar My guess is that you are drinking too fast. Sipping all day is better than "slamming" it back. Not saying that you are chugging, but just drinking faster than your gut can accommodate. Generally, I drink very little with meals, other than sipping on wine or water. Drinking too much with meals can make your meals zip through faster too. This does improve with time, but I am 20 years post op and still see this effect. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Ulcers & Hernia's with Jpouch
ikenberryikenberry
skn69 Hi ikenberry, I've had quite a few hernias...6 I think (some small and some really big, all fixed with mesh repair)...I can't say that I had a particular pain...more like I had a diffuse pain in a region like 'the right side' or midline but I couldn't pinpoint it. They never found them using traditional methods...ultrasound, x-ray or scans...either, I had a specific symptom (peristomal hernia that effected the stoma directly which was its own diagnosis) or they felt them through palpation or... [ more ]
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J-Pouch ForumsGeneral Discussion
Digestion of different states of food
FM Former Member
Scott F When thinking about transit time, remember that with a bag the stool exits pretty much as soon as it arrives. When there's a reservoir (a J-pouch or a K-pouch) the stool can spend quite a while waiting upon your convenience. The recto-sigmoid colon is a much bigger reservoir, of course. [ more ]
NancyJo I guess I should be eating more red meats. Ugh, I hate meat I typically eat fish or chicken. My husband does all the cooking, so he will be happy to know that steak is back on the menu. Originally Posted by skn69: I am not sure about the raw/cooked question (although in France they swear that toast or toasted crackers are more 'digestible' than fresh bread, raw eggs and raw beef too won't catch most Americans eating either) and that soft, ripe cheeses (brie, camenbert) are easier to digest... [ more ]
skn69 Hi, I tend to think that our transit time to an outside bag (or just post op) is much quicker)...things go through you like a high speed train...your body is getting used to your new plumbing and is going to take some time to get acustomed to it. Once you are hooked up things should slow down after a while and the output should be a thicker than just water... I've had my k pouch for 36yrs (yikes!) and my problem is that things are too thick now...(probiotics helped with that too)... I would... [ more ]
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J-Pouch ForumsGeneral Discussion
Good Night's Sleep?
Erik RErik R
NancyJo I read through this entire thread and found the Benadryl topic came up among many people. I thought that it was just me or a coincidence that I, too have found Benadryl helpful. I am super sensitive to all drugs and medications so I take 1/2 an Tylenol PM at night. The Tylenol PM is Tylenol and diphenhydramine, or Benadryl. I believe that the diphenhydramine calms down my gut and I don't get urgency overnight. It, also helps with my arthritic pain that can keep me awake. I am glad to know... [ more ]
ytcrockpot 1mg of Valium the not sleeping has really been affecting me horribly and the doctors are worried i hate taking meds to sleep but after 34yrs of broken sleep, I need something [ more ]
Scott F I think dava makes an important point that is easy to forget: habit can play a significant role in how we behave when we wake up at night, and how good a night's sleep we get. If we automatically get out of bed and use the toilet every time we wake up, we can end up with a much more interrupted night than if we notice that all is well, turn over, and go back to sleep. It is normal to awaken during the night (more so as we age). What we do when we wake up can make all the difference. None of... [ more ]
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J-Pouch ForumsGeneral Discussion
Pelvic floor therapy
AG Acia Gray
tf I highly recommend the Pelvic floor therapy. It help me so much. No more burning and pressure and pain very minimal. [ more ]
Hopeful11 I was prescribed this after manometry testing showed pouch dysfunction. It was very gratifying to see myself progress over the weeks/months, and it did fix the specific problem I had quite nicely. Takes some getting used to and a few of the techniques were a little uncomfortable at first, but I'd absolutely recommend it if indicated. I still use the stuff I learned in PT a year later. Make sure you get a provider who makes you feel comfortable; mine was awesome. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Board Taken Over By Rigged/Inaccurate Surveys
CTBarristerCTBarrister
Jan Dollar CT- I was not going to respond again, but felt that I needed to. Yes, this would be better suited to the Rant and Rave forum. But, that really isn't the point. While you may think your criticisms were completely fair and accurate, there were so many over-the-top descriptive adjectives that it came off as insulting and completely unfair. Your valid points were lost in hyperbole. This isn't a court room, just a friendly forum. I am sure your intent was not to insult or come off as superior,... [ more ]
CTBarrister I probably should have posted this thread in the "Rave and Rant" forum but otherwise everything I posted is completely fair and accurate criticism. If none of you believe there should be any minimal standards of fairness or accuracy in posting surveys, then there isn't going to be. I get that it's all anecdotal but to me anecdotal information should also make some sense. The one response here that is well taken is Scott F's point that if it's annoying I should just ignore it. That is advice... [ more ]
Hockadoo Thank you, Jan. Well-stated. Maybe some people just need to add a chill pill to their list of meds. [ more ]
See all 21 replies...
J-Pouch ForumsGeneral Discussion
consistency of bowel movements
ranilynn74ranilynn74
ranilynn74 I had an mre on Monday and lots of bloodwork. Going for a pouchoscopy (my first one in 11 years) and endoscopy in 2 weeks. I have recently been having some excruciating pain, but it only lasts a day and then doesn't come back for a couple of months...so weird. I'm actually very afraid of having a pouchoscopy and that's why I have waited so long. I tried to find a dr in New Jersey, but I couldn't, so I am back with my dr. in NYC that I trust, so hopefully I will be all fixed soon! [ more ]
tf Hi, I can say 15 x a day isn't normal. Were u checked for c-diff? I recently started going over 7 x a day and a lot of diarrhea and I was checked for c-diff, this is about 3 x I have it. Other than that my stools are in between depends on the day and what I eat a very big part of it. The FODMAP diet really helped. Yoga and PT pelvic floor therapy made a big difference. I feel for ya & all of us who have to battle this day in an day out. Thankful for this website I have received many good... [ more ]
Jan Dollar Yes, there is no one "normal." Just like with people with a colon, there is a wide range of acceptable function. What matters most is that you feel well. Consistency and frequency varies with each person, their diet, and whether they choose to take medications to control it. Bottom line, if you do not have urgency, cramps/pain, difficulty emptying, or bleeding, and you feel well, then you have nothing to worry about. Jan [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
VSL#3
K kubrider
judyk Exactly, I was supposed to take it 2x a day, not 4. If the need arises I will look to you for tips on how to fight the insurance. Life is hard enough without putting up with such BS!! Judy K [ more ]
Scott F For a maximum dose (4 packets/day) it's about $600 for a 30-day supply. I fought like heck. [ more ]
kubrider Interesting Judy, I also have Anthem Blue Cross though not for State workers so maybe different. $300, och. I'll definitely put up a fight. Will let you know how I make out. Thanks for the input. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
interesting study on 15 yr pouch deterioration
PouchomarxPouchomarx
JLH allykat looks like we are on two forums!! for a k pouch consult i went to dr. bauer, who is considered one of the top surgeons. he doesn't take medicare, which is the major reason as to why i am going to cleveland clinic. if you aren't on medicare he might take your insurance. while there i also saw dr. peter rubin for a scope. he is not a surgeon, but a fantastic doctor in terms of listening and compassionate. you might go to him for a second opinion? he's with mt sinai also, go to k pouch... [ more ]
AllyKat Entyvio is an option offered to me. JLH if you have pouchitis with the jpouch why do your Drs think with a k pouch you will not also get pouchitis? I never thought of asking about that option cause I figured pouchitis would come back with a k. Who did u decide to use? I'm in NY as well and need to make some choices soon. Thanks [ more ]
JLH entyvio is $$,$$$ and not sure all insurances cover it. lowFODMAP is easier with a dietitian's help, but i did figure out the diet myself. if you go on it get the monash app. it makes all the difference for me. will need to stay on it even when the pouch is out. pity, but a reality. we only manage the diseases, never resolve them. right? keep me posted. jlh [ more ]
See all 15 replies...
J-Pouch ForumsGeneral Discussion
Surgery cancelled today !!
PouchomarxPouchomarx
Connies Good luck and best wishes for a speedy recovery. Connie [ more ]
aka KNKLHEAD Originally Posted by Pouchomarx: can and cannot eat??? i ate normally today as i did yesterday. The surgery instructions stated nothing to eat or drink after midnight the night before surgery. Last night i didnt eat past 8pm and nothing to drink after midnight. Tonight i will have no food after 7 pm and no water after about 10 since i will be going to bed since checkin time is 515am i currently have my ileostomy still. Ah, yes. I remember! Cleveland Clinic does this right. I had an ileostomy... [ more ]
JLH Sending White Light starting as soon as I get up. So you are covered from the East. Hoping all the best. My surgery is on the 13th At CC. Janet [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Pouch removal
winter wishwinter wish
AllyKat Shawnee, Praying that things are turning around for you now. Also think age is a factor in the speed of recovery process. [ more ]
Lambiepie Shawne h, what a rough go. Sharon is right about the fluids. Dehydration lowers blood pressure and yours is so low already. It also exhausts you. I hope you turn the corner soon. [ more ]
skn69 My good wishes for fast healing from now on...so sorry that it has been such a rough ride... Please don't foget to drink. I know you are tired, exhausted and washed out but dehydrations aggravates all of those symptoms plus pain meds make things worse. What really helped me was keeping mugs full of ice water next to me and taking small sips constantly. You needs salts too...try canned soups like tomato or chicken rice... Soon the nightmare will be over but for now, a good laugh or cry with a... [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
Butt irritationthat's not butt burn
J J9Pouch
aka KNKLHEAD My doctor said that the itchiness IS irritation, and to use Calmoseptine or other protectant, even though I don't have butt burn. It has helped! [ more ]
Megan O Probably not what u are experiencing, but sometimes I get a yeast infection down there. I feel a slightly bumpy rash and it itches wicked bad. Miconazol cream applied a couple times a day knocks it right out. But for regular ole itch anything with menthol cuts the itch for me. I.e. triple bond lotion or calmoseptine [ more ]
Chayes I too also suffer from occasional itchiness. It seems to be most frequently linked to what I eat and my probiotic (if I forget to take it or when I initially started it). I find just keeping clean (using baby wipes ect) really helps and it usually only last a day or two at a time. Hope this helps. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Bleeding Since Takedown
JeffLoperJeffLoper
ciba I realize this post is over 2 years old, but I'm in a similar situation and I wonder if your symptoms have resolved, and what treatment finally worked. I have been bleeding with every BM for over a month (takedown Sept. 14) and I will have a scope this coming Friday to check it out. They are going up past the pouch to the point of ileostomy reconnection. I have been on Cipro and Entocort for 2 weeks without improvement. Did they ever figure out how to get your bleeding stopped? How are you... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Probiotics-Scary!
Y ytcrockpot
jeffp Your best bet is probably VSL#3. It has some research behind it and is available by prescription. I've been a guinea pig and wasted money on numerous brands that did nothing. Even VSL didn't work the first time years ago, not until I tried the newer double strength version. [ more ]
thumprhare Check out consumerlab.com. third party independent tester. It is a subscription service but worth it in my book... [ more ]
Scott F I like to say you're ahead of the game if a supplement doesn't kill you. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
J-Pouch and Polymialgia Rhumatica
smrdaz4lifesmrdaz4life
smrdaz4life Thank all for their experience. Just one more drug I do not want to take. I have many side effects to medication. Just wanted jpouchers experience with methotrexate. I guess it is my only way to get off prednisone. [ more ]
TE Marie I hate it when one specialist wants us to go off of a drug that is needed for a different health problem. My elderly father has faced this many times. I've had a few problems too. A friend of mine has polymyalgia R too. I took her to the ER with excruciating pain before her diagnosis and prednisone was prescribed. I can see your problem [ more ]
Jan Dollar Lots of folks on MTX with j-pouches. Inflammatory arthritis is pretty common. I have enteropathic arthritis. Not on MTX (yet), but it is on the table as a possibility in time. Jan [ more ]
See all 4 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.

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