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J-Pouch ForumsGeneral Discussion
jpouch makes a lot of noises
N neosapphires
PDXDavid This reminds me of when I had my ileostomy for 10 months before take-down in October of 2009. I shared a workspace with 5 other graphic artists, and when I got back to work (had colon removed on a Saturday morning, went back to work that Wednesday), I discretely told each of the 5 people that because I had my colon removed, I had a temporary medical device attached to my stomach that might make strange noises. At the end of that day, I learned that one of them - a female - complained to HR... [ more ]
phonix2g I think your gonna have quite an issue trying to control those bowel noises. Sure making sure your eating stuff that is not as hard to digest or produce less gas is the way to go but I've had bowel sounds when I had a healthy colon years ago. I think unfortunately you are stuck and a lot of people would think eating earlier will help with that issue also but I've found from experience that my stomach start making more noises around bedtime because my stomach is looking for food to digest and... [ more ]
mgmt10 I have had my j pouch for 3 years now I have not found a way to quiet the noises. I am sure it's a fine balance of diet since certain foods may make you more gassy. I'm not willing to change my diet because it doesn't bother me that much but you may want to try eliminating some things to see if it's something you are eating. I have heard people post here that say taking probiotics help. The noises do however come with the territory now at least to some degree no matter what you do. After... [ more ]
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J-Pouch ForumsGeneral Discussion
Message for FUTURE J-Pouchers
P PDXDavid
Cataja Love that Jan...! [ more ]
Scott F It's certainly true that satisfaction rates with J-pouches are much higher than you'd think if you just read these forums. OTOH some things that happen with J-pouches aren't uncommon, and folks ought to be prepared for them. For example, antibiotic-dependent pouchitis is common and quite manageable. If someone convinces themselve that daily antibiotic use is unacceptable, or a "failure," then they sure might be disappoinited. [ more ]
kta When I knew I needed surgery, I think I read every post in the archives. Instead of scaring me, it prepared me for what to expect. This board made the choice a lot easier because I felt armed with information. It helped me interview surgeons and, as best as it could, prepared me for that challenging first year. [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch issues
F fishon
TE Marie PDX David, There are many people on here who have gone back ileo's while resting their j-pouches. You might want to search for those discussions. There are several people in the FB support group that have done so but I can't remember their screen names on here. Better yet might want to start a new topic on this and you will receive responses from those who have done so. It's a good question. [ more ]
TE Marie fusion, I am in no way ready to ditch my j-pouch. I've learned how to control my problems. At first my local doctors didn't know how to diagnose and control them. There are people, many on here, living with more problems and taking more medications than I am. Many of those with chronic pouchitis constantly rotate antibiotics. Since my Mayo GI diagnosed me with IPS vs Pouchitis I take antibiotics much less than I was. Since I have gotten my c.diff under control I don't take antibiotics for... [ more ]
chiromancer What you say is true, though I personally had no problem with my loop which made the prospect of going to an end ileo a much easier choice. I could have lived with my loop and my end ileo is better. The problem as I tried to explain with the end ileo pouch left in place is the excretions, I thought they would be no worse than what I had with the loop, the typical mucus that many complain about. That was not the case, The pouch is basically starved for nutrients ( I believe a certain amount... [ more ]
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J-Pouch ForumsGeneral Discussion
Cipro and Pouchitis
A Av8erchic
Robert1 i took Cipro for years, treating pouchitis, now ive just been diagnosed with c.difficile, because of the cipro, just stating, be carefull. [ more ]
Scott F Also: congratulations on finding a doc who can provide decent care even when the appointment schedule is clogged. Your appointment will be much more productive with the information you're collecting this week. [ more ]
Kia Excellent! [ more ]
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J-Pouch ForumsGeneral Discussion
Long Term Disability
P Pkitty
Mental Kase Back to the original Poster, Regardless of what your new prospective employer knows, or is told, or discovers about your previous employment -you will still need to proceed with the interview process and all of the other topics that will need to be discussed. I would advise, clear your head of all that can't be controlled, concentrate on what you need to do in the interview to get the job. Reply to what you are asked on the LTD subject with the least amount of information you can get away... [ more ]
Lesandiego Thanks for the free legal advice CT, but I am not trying to hide anything from LTD, I have already won my appeal(without the need for an attorney), as it was the right and legal thing for LTD to continue my disability payments. All of which I am sure is well-documented in my file. I also did the right and legal thing by informing my LTD carrier that I obtained part-time employment when I was able to start actively looking for work regardless of my ongoing medical conditions. I am getting... [ more ]
Mike H Pkitty, if you post on Facebook or any other social networks or websites that you have a disease or any health issues and are on LTD it is fair game for the company hiring you and trust me they all check the social websites. I had severe UC and now I have a J Pouch and am loving life again. A life on LTD or a J Pouch is an easy decision for me. [ more ]
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J-Pouch ForumsGeneral Discussion
lets play the NAME GAME!
K KeepFighting(Manny)
phoenix08 I named my ostomy Miss E (for Miss Elimination). My daughter thought I was saying Messy which she was! I just call the jpouch - My pouch - but around period time, I always say it's being "pissy" (sorry!). The ostomy was a female, but the pouch rates only as an it. [ more ]
SteveRM I don't have a name for my pouch, but I called my stoma, "Little ****". Sorry for the cusing. [ more ]
skn69 My best friend from back home has had coversations with me about George, in public, for years...we don't even realise it until someone asks us if George is one of our kids! (gives you an idea of the context of the conversaion!) Once I was asked how old my son was and why I had so much trouble potty trainning him! Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Thank you all
C cassiecass
Jan Dollar The response will vary from person to person, depending on the type of pouchitis they have, so there is no one right answer. I recommend you read this comprehensive article by Dr. Bo Shen first to see if it answers your questions. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3093723/ Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Just trying to figure things out....
P phonix2g
phonix2g Yeah Im not surprised about anything with the good old J. Ive seen a lot of stories of people who have got multiple dilations. If that is the worst of my issues I will take it. You have also told me about your dilations but you, I was gonna say "manned up" but you "ladied up" and got it done in the office which I refused to do and will continue to refuse to do if I need to have anymore done ha ha. [ more ]
mgmt10 It was probably a combo of your dilation results, the wheat thins nacho style and the warm water from the bath that led up to that mega release of gas. Don't be too surprised if you need to be dilated again. I had to go five times. Hope you keep feeling good! [ more ]
phonix2g David, I've always had the ability to pass gas and I usually take baths on a daily basis. It is easier either on my right side or stomach being the best most likely cause the gravity contains any stool that would be following. I can also differentiate between stool and gas. This is a trick I wanted to learn early in the game so I could get rid of that uncomfortable gas when I needed to. It didn't come without its consequences in the beginning but practice makes perfect so I was willing to... [ more ]
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J-Pouch ForumsGeneral Discussion
Upper Endoscopy & Flexible Sigmoidoscopy
G grandmaof1
grandmaof1 Yes, it is over!!!!! I did the second prep with 1/4 left over enema and warm water. That was so much better. He said I was cleaned out and that everything look great. I got pictures and the best part. My surgeon was there also and got to see it. So I got double the treatment for the price of one!!! My doctors are so awesome. How neat for her to see how well she did and how well it is working out. Now the waiting game for the results. I go back in November. Praying for the best But aren't we all. [ more ]
grandmaof1 Thank you so much. Today is the day. This darn prep is something else. The first one is the enema and I am going to switch to warm water. Thanks again everyone. It is amazing to have all the support. [ more ]
skn69 Hi Granmaof1, Just a wish for good luck and good results with your scopes. Let us know how it goes and what they say. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
2 weeks since takedown, I love it
S Sburr17
Sburr17 DougF, I had my procedure at Brigham and Woman's hospital with Dr. Goldberg. He is great, from the time I saw him in the hospital when I was admitted months ago, to my first surgery, to my takedown he was available to me. He gave me his home cell phone and said to text him day or night with questions/issues. I can't say enough about him, never mind the fact that both surgeries went off without a hitch. Best of luck if you decide to go with the J-pouch. I have no regrets about it so far. [ more ]
DougF Seth, where did you have your procedure? I'm from Boston and have been at MGH with Dr. Sylla. [ more ]
Peaches So glad to read your story! My husband is 5 days post-takedown and so far it's been better than we were braced for. I know much could happen &/or change, but right now it's been such a blessing! And for the first time in 1 1/2 years, he's not itching like crazy around his wafer! That in itself is huge! Enjoy that trip!!! [ more ]
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J-Pouch ForumsGeneral Discussion
cuffitis, meds not working
Akk3769Akk3769
Nomoremeds They leave in a little bit of the cuff to have something to attached the pouch to. Doing a mucosectomy increases the likelihood of incontinence, so many surgeons will leave it with the hope that it will not be a problem or can be treated topically. [ more ]
Akk3769 Nomoremeds- I don't understand why they don't do this in the first place. I as well go to Cleveland Clinic. My surgeon was Luca Stocci and I see Dr. Shen. [ more ]
Nomoremeds I]Now when you say surgery, what do they do for it?[/I] I am not exactly sure, as it largely depends on the nature of your condition. I have a consult at Cleveland Clinic about it but not until November. From what I understand, they can do a mucosectomy, which involves removing all the infected mucosa. They then "advance" the pouch and sew it back to the anus. I've uploaded an article (link below) that may be useful in helping to understanding this procedure. Feel free to let me know if you... [ more ]
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J-Pouch ForumsGeneral Discussion
Fecal Transplant
L LisaT
cassiecass There is an article today on Medscape titled Fecal Transplant Pills for C difficile Youmust log on to read it Cassiecass [ more ]
Pkitty Yup you are right Steve. But I cannot find anywhere whether this is even approved or if people can try it? I am sure a lot of people with IBD would love to give this a shot. [ more ]
ElmerFudd Come on David - it's only like 24-30 pills at one sitting And they're triple-layered for digestion in the colon (I guess they would have to custom-make double-layered pills for those of us with j-pouches). Pkitty - I have not read they are isolating the good bacteria. I believe they filter out the particulate matter, and I read they also make sure there are no pathogens (parasites, bad bacteria, etc.). So in that sense they isolate the good bacteria. But besides the known offenders like... [ more ]
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J-Pouch ForumsGeneral Discussion
CC appointment and surgery scheduled
S Subrew
TE Marie I don't think anyone should assume they will get cuffitis based on them having UC in their rectum. I believe most of us had UC in the rectum as that is one of the most common places it starts. I believe doctors look at the pathology of your UC and other factors when determining what kind of surgery to perform. The reason why the double stapled procedure is the most common is because it is the "most successful" and as I said before I probably would have still had the same surgery all over... [ more ]
Subrew Fishon, if it helps you any. I've had cataract surgery in both of my eyes and I see GREAT!! I wish I had it sooner. No glasses nor contacts. I appreciated your replies. Thank you [ more ]
fishon Subrew, When I had my colon my rectum would hurt so badly the only thing that really helped was a sitz bath of warm water. Tylenol would not even dent the pain. I think the hand sewn pouches may have a slightly greater chance of leaking, but double check. My wife and I now wonder if there is information out there regarding location & severity of UC in relation to cuffitis issues & severity of plus resolution. Hind sight. Due your due diligence, but don't over think yourself into... [ more ]
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J-Pouch ForumsGeneral Discussion
First few months of jpouch and some issues
G GraceL
GraceL Haven't heard of that diet I don't tend to take a lot of fibre but need some or things slow down way too much on me. It's like catch 22 too much fibre I'm me we out of the bathroom to little and I nearly need the hospital as things stop and I vomit. Will look diet up and give it a try nothing ventured nothing gained.its just frustrating and maybe I was so used to eating everything with my end stoma that I'm finding this part hard. Do you still be lots of mouth ulcers? [ more ]
Anushka Have you tried diet change? I had similar symptoms of feeling ill and miserable but went on a low-fiber, low-sugar version of the low FODMAP diet and got tremendous relief. I still have issues (including taking a turn for the worst last week, maybe related to something I ate off the diet?), but generally speaking its helped hugely. [ more ]
GraceL Jan thanks for reply my new surgeon was in on my op and after reading my notes remembered me because of the complications. Apparently I'm lucky to have the pouch as if it went on any longer i wouldn't of had it. I'm finding it hard to feel that patient surgeon connection maybe he is just different from my old surgeon but lets say I miss my surgeon. This is why I want to see my gastro as I feel I need some normalcy as since my old surgeon retired I've seen lots of junior surgeons who consult... [ more ]
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J-Pouch ForumsGeneral Discussion
Nerve Issue Question- Flagyl
D dibelljw
TE Marie It's probably autoimmune but not IBD caused. I have neuropathy in my feet and the neurologist doesn't know what the cause it. Yes they burn, they get cold, sometimes it feels like I'm walking on marbles or broken glass, then are numb and all variations in-between. I have to use a cane when they are bad as I find it hard to balance. I'd suggest you see a neurologist. My problem was not caused by Flagyl, I just don't like to take it in case it could make it worse. You should check out with a... [ more ]
Mental Kase TE, Yes, the dose range for Gabapentin is really broad, as you say, some above 2,000mg/d. The tingling and numbness is really starting to get to me, some mornings it feels like my skin is burned? My feet feel like they have been scalded and it hurts to walk on them, it's crazy. This has all ramped up quite a bit recently but I haven't been on a steady diet of Flagyl for years so I'm hesitant to pin the blame there. Crohn's is a relatively new (last year or two, possibly longer undiagnosed)... [ more ]
TE Marie MK, I'm taking 900, 300 3 times a day. I was on 300 like you. I've heard of some taking 3200 a day. I don't want to take that much but am just including that so you know it's not as high as it sounds. It it were something like prednisone we'd be thinking NO Way that's too much! For everyone else, it all started out with things like cold feet, hot feet and hands, tingling, pins and needles etc. Then things got closer together and worse. Flagyl and antibiotics are not the cause of my... [ more ]
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J-Pouch ForumsGeneral Discussion
Seeing Dr. Shen
L Laney
vanessavy To me that is Cleveland Clinic in general. I called Dietz and never got a call back To this day and I was in the ER locally. not sure if it is the doctors or the idiots that drive me nuts at the front desk. [ more ]
fishon It also took 4 phone calls to get my biopsy results, which was 4 months after the pouch scope. [ more ]
vanessavy You have to really CC his assistant Geeta and she usually replies if he is too busy. Yes it is frustrating but do you know how many emails he has on his phone unread at a time? hundreds... Doctors are human like the rest of us. He works all day long. Best time to get a response is to email him on weekends and weeknights. He has an iphone to reply. Only time I never get a response is when he is out of the country. Geeta will reply though. time of day matter for sure when reaching out to him. [ more ]
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J-Pouch ForumsGeneral Discussion
The worst 3 days of my j-pouch
ManchesterManchester
phonix2g Definitely sounds like a stricture. I had one for a little while and knew something was wrong. Always felt like I had the pressure like I had to go so bad and then get to the toilet and hardly be able to get anything out. This continued all day for days on end and yes it is painful I would avoid eating so I didn't have to go to the bathroom. What helped for me to eleviate the pain temporarily was a warm bath with Epsom salt and also sitting on a heating pad. I also would use beano and gas-x... [ more ]
jeane Sounds like a stricture or possible cuff inflammation. I always have a hard time emptying when my stricture is acting up and when the inflammation in my cuff is rearing it's ugly head, the stricture is always worse and emptying the pouch is a painful and very uncomfortable process. [ more ]
Nroley I have this too and I was found to have a stricture. I hope you feel better. [ more ]
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J-Pouch ForumsGeneral Discussion
Depressed after J-pouch--a mother's plea
FM Former Member
phonix2g I also battled a lot of psychological changes after my surgeries. It is tough to train your brain that this is your new "normal". It is as much as a mental as it is physical I think maybe even more mental than anything. I always had a laid back personality would never let anything get to me was always the positive one and could put a positive spin on any negative situation but things changed a lot after my surgeries. I'm a 30 year old male and it used to be hard for me to let any tears out... [ more ]
Chrissey86 Hi All, I too am extremely depressed i'm 27 years old, 26 when I had to have the first surgery. I currently am on cymbalta for depression and cipro and flagyl for pouchitis. I guess I just thought the reversal would be the light at the end of the tunnel that I needed, but after pouchtis and extremely bad butt burn it is really hard to feel that way. I just want to be able to go out for a glass or 2 of wine with the girls without having to run to the bathroom. Can someone please give me hope... [ more ]
Kia Oh, I forgot to mention....There are many posts on here about the mind/gut connection. I wish I could remember the one that mentioned there is recent research about this and that it ties in to our compromised ability to absorb. That being said, it is good to be aware this can be a two pronged situation. There is the trauma piece and the physiology piece. It may be the depression passes with time and/or short term treatment. Or she may find she needs on going treatment and/or antidepressants. [ more ]
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J-Pouch ForumsGeneral Discussion
Tired, so tired
T Teddybearlady
phonix2g Probably the worst and hardest part of my recovery process was being so tired all the time. It could be anemia which was my issue for several months after my takedown. I was so tired and lethargic that just pulling myself out of bed in the morning was a chore in itself. I would have to drag myself into the kitchen to force food down my throat and take my medicine before I could get a little bit of energy in me it was horrible. I had a home health nurse coming to my house and taking blood... [ more ]
mgmt10 It could be a number of things but get checked for anemia. Ever since my surgery I do not absorb iron well and I have to get periodic iron infusions. Have your thyroid checked as well. [ more ]
TE Marie It is a slow recovery process. Can you look back and see that you are feeling better than you were a few months ago? That's a good way of looking at your progress. Your body is still recovering from a major trauma. I hope you are feeling better soon [ more ]
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J-Pouch ForumsGeneral Discussion
Full blown obstruction
skn69skn69
Jan Dollar I doubt that an ultrasound would show anything either. It is less specific than most any test, unless you are looking at gallbladder, kidneys, or bladder. Might show a hernia, but not as well as a CT. If it is adhesion related, no test will show anything unless there is a current full obstruction. Jan [ more ]
skn69 Had the scan done and they found nothing of any interest but I am still having 'aftershocks'...occasional sudden, sharp abdomenal pain that just takes my breath away and stops me in my tracks... My GP wants to do a gastroscopy but I can't see how that will help me (only goes down to the stomach)...I suspect that I would be better off with an ultrasound. Wondering if I didn't somehow give myself another hernia? Pain is in the same spot every time, usually when I am active (walking uphill to... [ more ]
CTBarrister There are ways to make soft, tender matzoh balls. If you use too much egg they can become very hard. They key is do not use too much egg and cook hell out of the balls before putting them in the soup. If you are using a sparing amount of egg, and boil it for about 20 minutes, it should be nice and soft. Put one soft matzoh ball in the soup on the 3rd day, 2 on the 4th day, and so on and see how it goes. [ more ]
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J-Pouch ForumsGeneral Discussion
Fecal pills for C-diff--it works !
Minn MarkMinn Mark
Jan Dollar Yeah, I did have trouble finding an article that was specific enough about the release of the bacteria. Most were article for lay persons and they don't get into details like that, and for us, those details matter! Jan [ more ]
Scott F Fair enough, Jan. As long as it releases in the small bowel, it should work similarly for us, whether we call it "time release" or not. [ more ]
Jan Dollar I am not sure about that Scott. I think that the gel caps release in the small intestine, not necessarily a time release, so should be OK for those without a colon. But, I am sure it is an individual thing. "To make the pills, researchers processed the feces until it contained only bacteria, and then encapsulated the bacterial concentrate inside three layers of gelatin capsule. This ensured the pills wouldn't leak or disintegrate until they were past the stomach and into the small intestine... [ more ]
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J-Pouch ForumsGeneral Discussion
Do any of you not have insurance?
I iHateColitis
Scott F Actually there will ultimately be what are called "multi-state plans" in every state. Plenty of states have them already, though the complete rollout may take a few years. OPM is overseeing the multi-state plans (there's much discussion on RV websites, as you might imagine). http://www.opm.gov/healthcare-...-state-plan-program/ [ more ]
vanessavy I go to Hopkins and Cleveland Clinic. Nothing I would even consider good in NOVA area. I have one GI I had a scope with at Georgetown but that is out of state lines even. Easier to go to CC. For my disease I have to go out of state. [ more ]
Jan Dollar Gee, in the 40 years I have had health coverage, I have never had out of state coverage (unless it was for emergency care), so I don't think it is a rare condition of coverage. Sounds like a nice perk and I know quite a few people like to travel for care. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Internal Pain above my Incision and reconnection
P pmod122
Dog Bug your surgeon as much as you want/need to. Until you've recovered both physically and mentally, that reassurance can lift huge weights off your shoulders. I had insane cramps if I did ab exercises. Heck, I even had cramps that made me double over when. ..uhh. . .doing what guys do when they are alone and bored with a computer and an internet connection. Like Jan said, don't panic. Things take time to get all readjusted, stretched out, and for your brain to recognize what is normal and... [ more ]
Jan Dollar Sounds like adhesions (internal scar tissue). They can relax a little over time, but do not go away. If this cramping is constant like you say, you need to back off on your workouts and do more gentle, gradual stuff. It has been long enough that you should be able to increase activity, but not heavy workouts or abdominals, but everyone is different. It is possible that the ileostomy wound did not heal properly in the deep layers (muscle and fascia). You do not want to cause a hernia. So,... [ more ]
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J-Pouch ForumsGeneral Discussion
anxiety meds from GI doc??
OZOZ
Lindsey R. Yes, my GI prescribed antidepressants to me when I was going through a particularly rough time and my mom discussed it with him (I was a minor at the time). However, this was about 10 years ago. [ more ]
jeane My GI makes me get them prescribed from my GP. He has said since they are not GI related, he prefer the general practitioner prescribe them. this does not make much sense to me as they readily prescribe pain pills, but not xanax. I use this on occasion when I am having very disrupted sleep due to my jpouch function. [ more ]
PDXDavid Also, diazepam (Vallium) may be prescribed for rectal spasms. [ more ]
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J-Pouch ForumsGeneral Discussion
Family responses to sickness
MahshelleyMahshelley
kta When I had my first and only horrid flare, my regular doc was out for surgery. In spite of the fact I had never been a high needs patient, the docs and nurses would not take me seriously. I finally, after at least 6 weeks of trying, got someone to schedule a scope. They did it and immediately hospitalized me. So,while my family was helpful and supportive, my substitute docs weren't. [ more ]
KeepFighting(Manny) I'm lucky to have such a supportive family but in regards to having to deal with people that don't quite understand how we feel on the inside because it seldom shows on the outside, that was my problem with my employers pre surgeries... They always thought I was making things up about the pain and constantly accused me of ripping off the company because I was paid salary and would take days off when I was flaring real bad... I have yet to deal with pouchitis and I'm hoping I won't have too. [ more ]
skn69 When I got really sick and had my first big series of pre-pouch and k pouch surgeries my best friend dumped me. Big time. She was off living her life, graduating from high school, going off to Europe for the summer, going off to univeristy...she was doing what any, normal teenager should have been doing at that age; I was the abnormal one, locked in the hospital being cut to pieces...but it hurt badly that she dumped me. 10 years and a lot of water under the bridge later we met up again and... [ more ]
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J-Pouch ForumsGeneral Discussion
plasma donations
K KeepFighting(Manny)
Judy1 I was turned down donating blood after my surgeries. I think it was because I have FAP. That was 11 years ago so don't remember for sure. I do remember being vitamin B12 deficient too so that was probably part of it too. I think I'd be worried about giving to many donations. [ more ]
skn69 Manny, Is there nothing else that you can do other than donate your blood? I am sure that that is not the most lucrative of donations and sooner or later you will either run dry (figuratively speaking) or be refused for anemia...any work that you could do over the internet? Working from home selling stuff? I am not sure what is or isn't availible around where you are but selling your blood just scares me...after my long run of surgeries I tried to donate my blood and they refused me because... [ more ]
Jan Dollar I just looked and it appears that Arizona does not have any supplemental disability insurance to the Federal SSDI. That basically means that you are SOL until you are deemed permanently disabled, and the Federal assistance has a 5-6 month waiting period. At least it was the last time I checked. But, I believe the 12 month disability requirement is not from the date of application, but from when your disability started (when you became unable to work). I guess that is one reason why our taxes... [ more ]
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J-Pouch ForumsGeneral Discussion
About Eliminating Parasites
T Tat
Jan Dollar Does he think he has paracites, or are you just asking if it is possible? Sure, it is possible. Diagnosis is the same as those with a colon, with a stool analysis. Jan [ more ]
Scott F Tat- People with J-pouches can get the same parasites everyone can get. If your husband thinks he may have a parasitic infection he should see a doctor so the parasite (if there is one) can be identified and appropriate medicine prescribed. Why do you think he has parasites? That's not a particularly common problem with vegetarian diets. [ more ]
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J-Pouch ForumsGeneral Discussion
Life is sooooo bad right now
JillyJilly
TE Marie Dear Jilly, Thank you for the update. It does sound up from your first post. The plan doesn't sound like Disneyland but it sounds like you have good medical professionals on board. It's too bad you feel like a big pill, I know just how you feel. There are days I skip my vitamins because I just can't swallow one more pill! Notice I pick the vitamins, I'm get so bad, Please keep us posted on your progress. You are sounding so much better. [ more ]
Lynne2 Jilly, Thank you for the update. I hate that you are going through this. You've gotten excellent advice above and, like I mentioned in your other post, I think the docs at UCSF are top-notch. You will be in excellent hands when you go there for another opinion. We are rooting for you and wishing you increased comfort and healing ASAP! [ more ]
Scott F Jilly- I'm very glad the meds have helped with the pouchitis and incontinence. It seems like you're pessimistic about tolerating them long-term. Do you have a reason to be pessimistic, or are you just exhausted? [ more ]
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J-Pouch ForumsGeneral Discussion
Fistula left me with two unclear choices for fixing
JS Joe S.
TE Marie Best wishes Joe [ more ]
Joe S. My surgeon gave me reassuring news. He is glad that I am starting remicade cause its the best medicine for fixing fistulas and putting crohns in remission. I was really worried about the surgery if remicade didnt work and he said exactly what you said spooky. That most people just live with their pouch and only talk about surgery when quality of life is really low. He doesnt see us talking about surgery for a long time, if at all, since this is just the beginning. Im not worried about... [ more ]
Spooky Sorry to hear that it is CD. Definitely, your options would change, but many people with Crohns keep their pouches and do just fine. However, your large fistula does complicate matters; depending on location this may affect the pouch. All the more reason to get in to your surgeon ASAP so you understand exactly what you are dealing with and what your choices are. With respect to the remicade, this is likely being prescribed to manage the Crohns as well. Again, I cannot comment as to whether... [ more ]
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J-Pouch ForumsGeneral Discussion
Takedown 4 days ago, gas pains today, help?
S Sburr17
TE Marie Super Digestive Enzymes by Solray or LifeExtensions are good for more types of foods and cheaper than Beano etc. Plus I thought they worked better. I rarely use anything like them anymore. Both brands are ok, they are clear capsules with herb like ingredients inside. Someone on here posting suggested them to me weeks after my take down and they were great. You can get them at Health Food Stores or at Amazon.com etc. [ more ]
Dog I second phonix2g in asking what's in your diet. If possible, drop back down to crackers and water. Be certain to eat! If you don't eat, I think that contributes to gas. Try and walk as much as you can, that should help getting things moving. One thing that worked for me in certain situations. . .you know how a puppy looks when it wants to play? Head on the ground, butt in the air? Yeah, go in the bathroom and close the door, but I found this position helped move gas to where it could. . [ more ]
suebear Gas X works on stomach gas; my surgeon said not to use it as it sticks to the small intestines, and it doesn't work for bowel gas anyway. Walking will help at this point; and eliminating gas producing foods (complex carbs) and carbonated beverages. This is a temporary problem and should resolve itself in time. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Try to keep rectum with j-pouch?
D DougF
Pluot As I said, only 1-2 cm of rectal cuff are retained in the current procedure (double stapled anastomosis). An adult rectum is about 12 cm so the vast majority is removed. It is not necessary to retain more than that to maintain continence. [ more ]
CTBarrister Some helpful illustrations actually from this board: https://www.j-pouch.org/Illust.html [ more ]
Mental Kase Hello, Recalling some of my A&P from the past; the Rectum is a muscular column roughly 3-5 inches long that leads to the Sigmoid Colon. I assume that in the construction of the pouch, the Cuff requires some portion of Rectum for attachment and internal sphincter control. How much Rectum is lost to the process probably varies but retaining much of that muscular body I recall is very important for continence. Correct if wrong. MK [ more ]
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J-Pouch ForumsGeneral Discussion
Dilation advice
AwwwwwCrapAwwwwwCrap
jeane Thank You for this useful information. This makes sense because that's the approach they take when they do a balloon dilation [ more ]
AwwwwwCrap Jeane, Apparently, I was only off by degrees so it would put pressure on the wrong area before the dilator kind of "popped" in to place. That is how I was creating an issue for myself. The doc taught me at the visit to barely put it in, pull back to kind of stretch our the anus before proceeding with rest of insertion. It has made a huge difference. Again, if you are having problems, I would go with your dilator to the doc and have him work with you to practice and show you. Good luck! Jen [ more ]
jeane Jan, Can you better describe this? I know my anastomosis is on a deep angle and I am not sure if everyone with a jpouch has this issue or not or if that contributes to my stricture and emptying issues. I have had several dilations in the office and under anesthesia and sometimes out of sheer desperation, I will use the glove approach and try and maneuver a finger into the pouch outlet to try and open it up and hold it there for a minute or two as my GI does under anesthesia. I am sure he is... [ more ]
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J-Pouch ForumsGeneral Discussion
food tolerance long term
K KeepFighting(Manny)
Dog I eat whatever I want whenever I want. The only real difference between before/after J-pouch is that those foods that give me gas really cause discomfort when stretching the pouch. So, besides gas causing more pain that my colon days, no real difference. However, the first 3 months post surgeries is a bit iffy as your system adjusts. Be sure to chew your foods a little better with a pouch. [ more ]
CeeeeCeeee It took awhile but for me I can eat/drink anything/everything. Every now and then there is some discomfort but after the culprit food/drink passes....the problem is resolved and so I don't exclude any food/drink I want! [ more ]
kta For the most part, I can eat and drink anything I want. I did, however, spend probably 6 months living on sourdough bread and bananas. I never thought those days would pass. [ more ]
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J-Pouch ForumsGeneral Discussion
Tummy tuck
S sally85
CeeeeCeeee Not the same as your situation but about a year ago I had a hysterectomy and although my gyn surgeon wanted to do it lapro, he couldn't because I had too many adhesions. So, he opened me up along the same scar as the site used for my proctocolectomy and the results were phenomenal. Very little pain/discomfort and the site healed more quickly this time than I remember it healing after the first surgery. I, too, didn't realize they could re-use the same surgical site. [ more ]
sally85 Oh wow I had no idea that that was an option! My only worry is if they use the existing scar will they cause and damage inside with the small intestine? And my antenatal doctor said there won't be a colorectal surgeon when they do my c section and they'll call one in an emergency which sounds worrying [ more ]
skn69 Sally, You can ask your surgeon to use the exisiting scar for your C section...no reason to make you another scar...they used to do them up-and-down in the old days anyway...as for reconstructive surgery...it can be done at any stage of your life including during your C section...just talk to your Obs/Gyn and see if he can have a plastic surgeon there to close you up. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Feeling Stuffed...why
A ActiveUC'er
ActiveUC'er Thanks for the suggestions. It's likely not a blockage as I was in the hospital last week and had a contrast CAT scan (I've had the same full feelings for awhile). No other signs of a blockage. Output is pretty much liquid as I have a loop jejunostomy. I'm no stranger to the ER so I won't hesitate to go! The dehydration thing is something I need to seriously consider. I'll try being "better" about my liquid intake. I hate ORS solution so I'll hit up some salty foods to help with absorption. [ more ]
skn69 Active, You could have a minor blockage...are you vomitting again? Is stuff coming out of your pouch? Generally, a full blown blockage (or occlusion) means nothing going in and nothing coming out but partial blockages can allow some stuff through and therefore you have stuff in your bag but still feel like you are stuffed...you might want to call your doc and see about having a scan or other exam to see what is going on in there... If you start throwing up again, go to ER... Another... [ more ]
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J-Pouch ForumsGeneral Discussion
Imodium Multi-Symptom Relief
S Salmak
clz81 I like this product very much. I found it a couple months ago. It's the same amount of Imodium as the regular tablet with the added simethicone. I've found that many of my urges are really gas so this helps me a lot through the evenings. [ more ]
Pluot It's the same active ingredients as regular Imodium plus Gas-X (simethicone). There are many people here who use both, but I think it would probably be too little Imodium and too much simethicone relative to the usual doses for people with j-pouches. You're only 10 days out... have you tried drinking a little bit (less than one serving) of beer yet? I would give it a try without meds first just to see what happens. I'm about two months out now and thought for sure I would need Imodium in... [ more ]
Salmak http://www.imodium.com/products-imodium-multi-symptom product info if anyone is interested [ more ]
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J-Pouch ForumsGeneral Discussion
suggestions for ostomy belt
ST shoot thru
chiromancer If the reason for the belt is security. I would try the Coloplast elastic barrier strips. I find they work better than a belt. They are two half round trips you put over your wafer flange on the out side. I have never had a failure using these and I am very active. My ostomy nurse suggested I try them. You can get free samples from Coloplast. [ more ]
kta My ostomy nurse chose the belt I used. I would speak to him/her. [ more ]
Pluot I think most or all of the manufacturers make a belt that is designed to work well with their bags/appliances. So for example I always wore Hollister and I wore a Hollister ostomy belt that was compatible with Hollister pouches. I don't think the ostomy belt needs to have any bells and whistles, as long as the material is comfortable, it fits securely onto your pouch, and doesn't irritate your skin. Your insurance may cover a one time purchase of an ostomy belt -- mine paid for one for me (I... [ more ]
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J-Pouch ForumsGeneral Discussion
Questions about Healing after Dilation
P phonix2g
phonix2g Thanks I figured it was gonna take a little bit to fully heal after stretching out the scar tissue. Makes sense the first time around would be the worst. I just figured I might alter my diet because I have been eating quite a bit lately and have had a significant amount of bowel movements everyday which become more and more painful because I feel like I'm not giving the scar tissue enough time to heal. I've been patient for this long I can handle another week. Thank you. [ more ]
mgmt10 After my first dilation I was sore for an entire week. The subsequent ones were not as bad and I was only sore for maybe a day or two. But that first one was a doozy! I don't think I altered my diet during those days. It was life as usual. Drinking lots of fluids is definitely a big help. [ more ]
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J-Pouch ForumsGeneral Discussion
Shout out to Coco bidet!
aka KNKLHEADaka KNKLHEAD
NJK I have the coco bidet, the toto portable bidet washlet and a manual bottle portable bidet. use to hate being away from the house now I can travel with no butt burn even after a week. Best purchases I ever made. [ more ]
kta I have had my Toto Washlet for 9 years. It gets used anywhere from 5 to 15 times a day. Last year I had to send it in for service which cost about 150.00. The thing has been worth its weight in gold. [ more ]
CeeeeCeeee My TOTO Washlet is the to me as your COCO is to you! [ more ]
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J-Pouch ForumsGeneral Discussion
Takedown tomorrow!
S Salmak
TE Marie There are some good u-tube videos by a guy named Denis about the whole experience too. He chronicled his experiences from after surgery forward, including butt burn. Somehow through watching his videos I found this site in a search. [ more ]
Mike H and yes I typed that really fast without spell check lol [ more ]
Mike H I suggest you take it day to day. It may take a couple months before you start to feel anywhere near mormal again. Go to the ihaveuc.com website. It is moreinformative with curent real life stories that ill help you so yu do not have to post here all the time. Rela and stop trying to borrow trouble or you will get it. Stress is not good. [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch help
M Matt34
Pluot Yes, definitely. There have been a few posts just in the past few days about Dr. Remzi, who is sort of the "j-pouch god" at Cleveland Clinic, telling users they should lose weight before surgery. I'm a very small woman and I lost a lot of weight when I was sick so I was underweight when I had my first surgery. After the operation I told my surgeon that I was excited to gain some weight back (and this meant just going back to normal, not overweight), and the surgeon told me that I should try... [ more ]
Matt34 I really enjoy everyone's comments. One other question has anyone ever heard of having to lose weight before j pouch surgery can be done. I'm a 250lb man and that is what my surgeon told me a couple of months ago when we first talked about the j pouch. She told me it makes it easier to do the surgery when I'm at a lower weight. [ more ]
Scott F Matt, it sure sound like you're heading for a J-pouch, since they were developed just to offer a normal-ish alternative to the much simpler ileostomy. I'm sure glad to have been able to choose that option. I have only a couple of suggestions: 1) Choose your surgeon carefully. Someone who does only a few of these procedures per year would not be someone I would choose. A badly constructed J-pouch is not something you want. Also, the deadline your surgeon set may have been well-intentioned, to... [ more ]
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J-Pouch ForumsGeneral Discussion
Just had reversal ileostomy for J pouch, butt sore
S Sburr17
ceew I purchase calmoseptine at Walmart. It is in the baby section. Also I agree about the Ultra Soft Charmin. [ more ]
phonix2g Calmoseptine is good to protect the skin in and around the anus due to multiple bathroom trips and wiping so often but it is not going to help with the rectal soreness or tailbone pain you might be experiencing. What did they give you for pain? This pain is going to be from gas pressure or just gravity pull of any waste you have sitting in your pouch. For temporary relief I usually take a bath with Epsom salt or sit on a heating pad but this isnt going to diminish the pain completely. If the... [ more ]
Scott F Even plain zinc-oxide ointment, available at any pharmacy, works just fine. I'd suggest applying it after every BM, so it's there before the next one. [ more ]
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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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