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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 ForumsPouchitis
Water.
M MIkeD
Jan Dollar Whatever works for you is the right amount of hydration. I know I tend to be on the dry side, but I mostly drink when thirsty and like to eat a lot of "wet" foods (soups, fruits, yogurt, etc). But really, whatever keeps you away from the doctor is correct! Jan [ more ]
Scott F I drink plenty of water, Mike, but I think you probably drink more. Everybody absorbs water a bit differently with a J-pouch. Some folks do fine with moderate amounts of water, and at the other extreme some need plenty of rehydration solution every day. Some folks have to sip and other can guzzle it down. The most reliable indicator of good hydration is light-colored urine. Follks who defecate every time they pee may have more trouble observing their urine. FWIW, I've found that a full... [ more ]
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J-Pouch ForumsMen's Health
Receptive Anal Sex after Left Colectomy?
N Nico08
noctmonster Hey there! I know this thread is a bit old but I decided to create an account here to help anyone out there might be reading this and who is or went through the same thing i did. So my J-Pouch completion was in June of 2013 and I met my first boyfriend on July that year. I always thought I would be a bottom so getting the surgery devastated me. So for the first year I always topped and at first even certain positions make your scars hurt. Along the way he started by inserting one finger,... [ more ]
skn69 A non-subject for k pouchers and end-ileo's with definitive closing but... goodness gracious, I cannot imagine the possible pain or consequences to the pouch...very hard lifestyle choice...give up an important part of your love-life or risk an important part of your pouch (those anal sphincters are not eternal...and are an integral part of a healthy j pouch). Sharon [ more ]
nikiki I was just going through my post history and came back onto this exchange. Holy hell. I nearly hear my j-pouch scream in pain even at the very thought of anything entering my backside. It may not be the same for everyone, but it seems I can even feel why my surgeon said not to have any anal entry, as it feels fragile, always mildly inflamed, and like my j-pouch could experience major damage with anyone coming in for a visit. And the skin breakdown, occasional acid ass, and butt burn doesn't... [ 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 ForumsHelp! Need advice now!
Jpouch 1 1/2 yeras
BA Bill A
Scott F Four sachets daily costs just over $600/month (about $7300/year). Some insurance just covers it without fuss. Mine stopped coverage a while back, and I kept appealing (including to the state insurance administration) based on medical need, and after about a year I beat them. They had to pay retroactively. I may have to fight them again in January, when my insurance changes. The appeals process is designed to defeat you. During the fight I kept using the VSL, and paid for it out of pocket,... [ more ]
Bill A May I ask how you pay for it. Have you found an insurance. 4 sachets a day could cost 20k Thanks [ more ]
Scott F I take a "maximum" dose of VSL #3 DS: 4 sachets daily (2 with breakfast and 2 with dinner). I mix it in Greek yogurt. I take Metamucul twice daily, too, at the same time. It's safe to experiment on yourself with these things, and if you only change one thing at a time it can be very informative. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bleeding
B beckysmom
beckysmom All good advice. Thank you so very much. [ more ]
skn69 A little trick that she can try (if she has the stomach for it)...when next she goes, she should try to use a container or a plastic ziploc bag (I can see the commercials now...)...that way she (and the doctor) can better judge the amount of blood in her stool. (she can freeze it to make sure that it is not altered before she takes it in (just don't forget to take it out of the freezer...nasty suprise in 6 months if she doesn't). When you use the bowl you cannot really tell how much blood... [ more ]
beckysmom Thank you Sharon, In the past 2 hours she has gone 5 times. She says she has a sense of urgency but it can also be the panic of wanting to keep checking to see if she is still bleeding. I can't tell if its a lot, she lives hours away from me, but she says it is and then again it is in water so I don't think she is even sure.... At this time she said she is staying hydrated and waiting to see if she has to go to the ER. Of course we hope it stops and she can see dr on Monday. Thank you. The... [ 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 ForumsHelp! Need advice now!
J-pouch removal
Maggie MaeMaggie Mae
Mysticobra Originally Posted by discjockeyman74: It's not giving in. It's about your quality of life. I had mine taken down after 2 years. My body obviously rejected it. I was sick of being sick. I couldn't gain weight and was always in pain. Now with a bag I can live my life. I eat whatever I want, I'm on no meds, Im healthy and feeling great again. Having a great surgeon is critical though as its a complicated procedure. It's not my first choice but its the best decision I made. Life with a bag is ok... [ more ]
powder Originally Posted by Maggie Mae: I need some advice. I have had my J-Pouch for 20 years. After years of continuous pouchitis and every known drug, I have decided to have my pouch removed. Can you please tell me about the removal surgery and life after a J-Pouch? My husbands jpouch is still there, it just has to be checked yearly, [ more ]
Mike March Hi Judy, I am glad your doctor is not 'rushing' into anything. A decision like this is a full-on one way bet. I have been contemplating the same with ten years into this tempermental pouch. I find it to be as hard as getting the surgery to begin with. That bet didn't pan out as it was purported to be! Thanks all for your input. I am pursuing all other options before locking in the ostomy idea. Good health to all. Mike [ 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 ForumsPouchitis
Feel like I'm back to square one.
H hopetofeelnormalagain
Brewbirds I have the same reaction to flagyl. Augmentin works great for me. And yes I feel great using Humira too which I take for both the pouch and arthritis. It's definitely a try if things are miserable for you. [ more ]
hopetofeelnormalagain Flagyl makes me nauseous the whole time I take it I would be willing to do it if it helps the pouchitis as I have strong nausea meds to combat it. Thanks for your response. [ more ]
Scott F Levaquin and Cipro are closely related, so unfortunately they didn't really give you the full benefit of trying two different antibiotics. There are other antibiotics to try: Augmentin, Tindamax, Xifaxan. And: is the nausea from Flagyl temporary for you, or does it last as long as you take the Flagyl? I can't help you with the Humira question, though it seems a bit premature. I've been lucky enough so far to have found an antibiotic plan that's working. [ 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 ForumsHelp! Need advice now!
Blockage or pouchitis?
Pilot DebbyPilot Debby
Jan Dollar Oh dear! Sorry you have multiple things going on. But, it did sound like more than just the pouch. At least there is a plan. Good luck! Jan [ more ]
Pilot Debby Well I had my appt with Dr Church today. By the time I got there I was in pretty sad shape. I was very nauseated and my j pouch certainly was not working correctly. So in the end Dr Church went in with the scope and drained my pouch of almost a gallon of fluid. He could not get the regular scope in me and had to use the pediatric one. So the biggest problem I have is that I have strictures or I guess you can say a blockage keeping me from emptying completely. On top of that yes the gall... [ more ]
suebear I agree with Jan, it sounds like a gallbladder issue. Sue [ 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 ForumsMen's Health
Ran my first marathon!
R rocmicm
Kerrymareee ❤️
bwils Congratulations. I ran before my surgery (8 weeks ago) but have been nervous running at any significant distance because of the fear of having to use the washroom. I am curious as to whether you used the washroom during your marathon? Do you have any ritual as to eating before training so that you do not need to use the bathroom? thx [ more ]
JPouchCouple Paul, Great to hear you're doing so well, sir! I'm getting more active in the cycling/running community, and I'm curious, what does your typical daily diet look like? [ more ]
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J-Pouch ForumsHelp! Need advice now!
ICE CREAM
bederyparisbederyparis
suebear Over the years I have had some ice cream brands give me those problems, and others not. I think for me it's a particular ingredient in the ice cream; unfortunately the times I have experienced have been when it's served to me, not with purchased product. I am not lactose intolerant. Sue [ more ]
Jan Dollar This is true Scott, since lactose (and other nutrient digestion/absorption) takes place in the small intestine, not the colon. Lactose intolerance is very common in the general population, particularly as we age and if we go a period without consuming lactase. Also, major illness or surgery of any type can trigger digestive disorders, such as lactose or gluten intolerance. So, it is not the lack of the colon per se, but the trauma of illness and/or surgery that be the common thread. Jan [ more ]
Scott F Hard cheeses have no lactose at all. Lactose intolerance is pretty common, and it can appear (or worsen) if the small intestine is acting up (e.g. from a virus) when things are running too quickly. I think Sharon may have exaggerated a bit about how common lactose intolerance is for the colon-less. I don't think it afflicts a majority, and I don't think it's any more common for the colon-less than for folks with colons. [ 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 ForumsHelp! Need advice now!
long term cipro and its side effects
GypsyGypsy
Gypsy Thank you to Scott, Sharon and CTBarrister for answering my message. You have given me more insight to this problem. I am going to try cutting back on the Cipro to one a day and see how that works. If It helps, I will speak to my doctor to try different dosages to see if the lowest one continues to work. Thank you again for your input on this matter. I will keep posting on my progress. Take care all.....I am so glad I came across J Pouch Group........... it has made me feel less alone with... [ more ]
skn69 My only prolonged cipro treatment was for 1yr between 1999 and 2000. Biggest side effect? My ligaments became fragile, breakable?, swollen, painful etc...I started to get tendonitis all over the palce. Don't remember any other specific ones. Sharon [ more ]
Scott F I've been on Cipro more or less continuously since 2009, with no significant side effects. It has enabled me to thrive with an active and essentially normal life. While it's preferable to rotate antibiotics every 2-3 weeks, and I'd encourage you to work with your doctor to explore that option, I'm here to point out that you can be just fine even if that doesn't turn out to be satisfactory for you and you need to stay on just Cipro. None of the other antibiotics individually worked for me. [ 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 ]
See all 19 replies...
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 ]
See all 2 replies...
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 ]
See 1 reply...
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 ]
See all 8 replies...
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 ]
See all 46 replies...
J-Pouch ForumsHelp! Need advice now!
Permanent Ileo or J pouch?
Becky18Becky18
NancyJo It is a tough decision to make. I have, at times, wished I kept my ileostomy. I was getting used to managing it and developing a routine by the time I had the take down. However, I have had equal positive results with the j-pouch. The issues I do occasionally have with the j-pouch, like occasional diarrhea and frequent bathroom visits, would have manifested themselves with the ileostomy. as well, just in a different way. I don't find one or the other more or less convenient. With the j-pouch... [ more ]
deweyj As others have said and a friend here locally is doing, you can proceed with the 3 step jpouch surgery, the first step is I believe an end ileo. my friend has chosen to wait and see, perhaps punting the other surgeries until much later or if she decides she's okay with the end ileostomy might then decide to have the rectal stump removed. Personally I had a nineteen year run with occasional bouts of pouchitis but med free and for the past almost ten years have been battling to keep my jpouch... [ more ]
Jan Dollar If you are going to have a 3-step procedure, you WILL have an end ileostomy and time to decide if you wish to stay with it before going on to step 2 and j-pouch formation. But, once the rectal stump is removed, you cannot go back and change your mind that you want the j-pouch after all. Jan [ more ]
See all 7 replies...
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 ForumsHelp! Need advice now!
Problems 9 days after J-Pouch Surgery
RR Rafal Rybak
skn69 I am so sorry, this is adding insult to injury! First off, I agree...the mucus slows to a halt after a while...mine did stink horribly (no one warned me about that pre-op)...they did my total colectomy 5 months after my k pouch creation... A couple of suggestions for the bag change....try doing it in the bathtub or shower...makes clean up easier...also 1sth thing in the morning on an empty stomach... I have a k pouch and with every surgery I had to wear it hooked up to a tube/flange/bag... [ more ]
deweyj oh boy I am sorry to hear you feel so discouraged. but take heart the early days are the worst days. Rachel is spot on, the mucus discharge from your bum will slow and eventually cease. 9 days out is very early days, not sure if youre still on pain meds, that might or might not have anything to do with control. as to odor, how frequently are you changing the appliance and maybe consult with other suppliers, I hear nowadays they make a variety of bags with filters etc. might also be the food... [ more ]
rachelraven The fluid from the pouch/your bottom is not indicative of how things will be after you have your takedown. Intestines create mucus, always, but with stool mixed in, you rarely see it. After my surgery, at first, I couldn't control the mucus discharge, but slowly it became less and less. My surgeon used the decrease of it as a way to gauge when I was ready for takedown. For me, that was at 4 months. However, you mention a foul smell; my discharge did not have any real smell at all. Maybe ask... [ more ]
See all 3 replies...
J-Pouch ForumsPouchitis
continuously on antibiotic s ?!
B Ben552
deweyj I would tend to think that going off when possible would be best. it does seems like many meds you can build a tolerance for them, rendering them less effective over time. when my dx first was changing to crohns, we tried rotating three antibiotics on a monthly basis, Flagyl, Augmentin and Xiafaxin. it didn't work for me and I ended up with an allergy to Augmentin. I finally went on Remicade which I had resisted initially and when that kicked in it was wonderous. I wonder if your doctor... [ more ]
jeane I was doing pretty good until I overdosed on potato chips. As a result, I am fighting a nasty case of pouchitis at this moment. Just awful when it hits. Sugar too bothers me. [ more ]
Scott F If I could go 2-3 months symptom-free without Cipro I'd definitely take the breaks. You might want to pay very close attention to when symptoms return, so you can restart the treatment without delay. [ more ]
See all 4 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Plastic Surgery consult for hernia repair
GaylaGayla
Jan Dollar Typically, insurance covers only that which is medically necessary, with the exception of the face (because of the significant emotional trauma associated with it). Medically necessary plastic repair usually involves the hands, feet, and joint areas. Tummy tucks or similar surgery may be covered if the surgeon can associate a medical problem with it (like fungal infections from overhanging abdominal skin with extreme weight loss). Scar revision due to pain or restricted movement may also be... [ more ]
skn69 I have had about 1/2dzn hernia repairs over the last 7yrs...and at least 5 abdominal reconstructions (in small doses)... My laporoscopic surgeon does mesh repairs on me each time (I seem to spring lots of leaks in my abdomen!) but he doesn't fix the esthetic aspect (only makes it worse with all of those tiny holes...looks like I have the measles) and my plastic surgeon did one surgery with general that he mightily botched (passed it on to an intern who did only half the job) so he has been... [ more ]
See all 2 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

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

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