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J-Pouch ForumsGeneral Discussion
exercise makes me ill
duck11duck11
phonix2g you might want to see if your dr can refer you to a hemotologist so they can do test for multiple things at once a more advanced blood work up rather then just the basic testing that is not going to show much. I had to go to the hemotologist to find out that I needed iron infusions which I would not of known otherwise through basic testing. Good luck. [ more ]
dew How was your vitamin D level? What about your cortisol, IFG-1 and testosterone, assuming you're a male. [ more ]
Jan Dollar Totally agree with Scott. I was not trying to imply that you are not dehydrating. That seems evident due to the fact that rehydrating helps you. My point was that there may be other (hormonal) issues that prevent you from maintaining homeostasis during stress and/or increased activity. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Stricture treatment
M Mark01
Mysticobra I have been dilated both ways. Being knocked out takes awhile. The procedure that is.. We all know that. But just doing it and it's over quickly. But.... It does hurt. To each his own. I have only been dilated 3 times. I don't have to do it anymore thank goodness. Richard. [ more ]
phonix2g I have had to get dilated. The first time around he just used his finger which was not bad. The second time around he pulled out this metal tool that looks like something you would purchase at Playtime Boutique. That thing hurt like hell and I told him from then on if he needed to do anything like that again he better knock me out because that is just barbaric. I ended up having to get 2 more but both those times under anesthesia which is the way to go. Not sure why people try and tough it... [ more ]
LoveLife PS: I have stenosis related to j pouch. [ more ]
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J-Pouch ForumsGeneral Discussion
Trying out J - pouch again after 5 month Ostomy, any suggestions and what would you d
dgtracydgtracy
dgtracy Shainy - Thank you, i hate to admit this but i am one of those over-thinkers. i constantly worry about things out of my control and always hope for the best but prepare for the worst. Mystic - Thanks! where are you at with yours? ostomy or pouch? Jaypea - good advice, thanks! emotionally may be tough but will persevere. skn69- i will most def work on simple proteins, i have some remaining VSL3-DS to start immediately as well. Arnaud - Jan is correct, i had so many issues with my first... [ more ]
Jan Dollar Arnaud, I believe DG is hopeful things will be different because his surgeon feels he took care of the structural issues that were causing obstructions. I think he knows that the j-pouch is still imperfect compared to a healthy rectum and colon. DG, my advice would be to try to eat small, frequent meals until you can tell how your system handles it, and give it 3-6 months to settle down. Anticipate some rough times at first. Maybe some probiotics to help keep your gut flora in check. Good... [ more ]
Arnaud DG, am quite surprised that your motivation for going for a pouch is "go out without fear of where or any access to a bathroom". I have a pouch which had some problems and had been thinking of going back to an ostomy for, among others, that precise reason ! I thought that a bag is more convenient than a pouch when you're outside (a lot easier to empty), plus you can put larger bags if you want (unlike the pouch :-)). Now my pbs have gotten a lot better but I still have a fairly small holding... [ more ]
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J-Pouch ForumsGeneral Discussion
Dialation dilemma
L LoveLife
LoveLife I apparently have two stenosis. Both where the j pouch is connected. Jan... I know, every situation is unique, I wish it would be different and that I could just look up what would happen next. Hugs and merry x-mas. PS: I am just thankful that I am still alive and kicking [ more ]
Jan Dollar Love, Try not to compare your situation with others. Unless they were in for a dilation of an anal stenosis, their situations are not similar. Perhaps they had Crohn's strictures and it was not successful. Jan [ more ]
dawn58 What kind of dilation is it? I have had 2 in my doctors office, no anesthesia. He uses the tip of his pinky. [ more ]
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J-Pouch ForumsGeneral Discussion
Is it dangerous to take the flu shot immediately post op?
skn69skn69
Halo52208 My doctor had me wait six weeks post op. He didn't want to overload my system right away. [ more ]
rachelraven We hold them on ICU patients, but once out of ICU, they give it. We hold it to not tax an already taxed system, but if it's just simple surgery, they give them to patients here. [ more ]
skn69 Thanks, I will take it tonight...no contraindication in taking it in the off chance that I already have? Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Canasa v. Anucort: long-term, low dose safety?
n/an/a
TE Marie I would love it to take anucort all the time as a 30 day supply costs less than 1 dose of canasa. Just thought I'd throw that in. Also my Mayo GI says I can use them both, as in one in the morning and one at night, when the flare up is bad. So much of this is trial and error. [ more ]
n/a Thanks - I don't know why I didn't think to mix them up! I don't really like using Canasa anymore, for various reasons, and as it kind of hurts until it gets to my pain-free point. Once (or so) a week should be tolerable, though. The anucort is small enough not to be a problem. Glad to hear Dr. Shen says you can take anucort forever. Try as I might, I could find no data on-line re. this issue. But I figure that if I can keep it at a low dose (2-3/week) I minimize any risks. Dawn, I haven't... [ more ]
dawn58 I find I get acne with Canasa, which I have read is a side effect. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Liquid Stools/Gas
B BMBoy
ks1905 So you are not being treated for Pouchitis? Why would they prescribe Vanco first if you are negative for c.diff. Are you using a family doc? Or a GI or surgeon? Your symptoms sound like my current symptoms with pouchitis. You might want to try Flagyl, it treats both C.diff and pouchitis. [ more ]
jeane Sounds like pouchitis. I never get blood or fevers with it. I just get a lot of gas, awful cramping, loose stools and urgency/ rectal pressure. Antibiotics help symptoms within hours for me. [ more ]
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J-Pouch ForumsGeneral Discussion
g.i. doc in NYC
S scallop
beckysmom My daughter is 27. She sees Dr Peter Legnani (212) 369-2490. He is at 91st and York. He is in the office with Dr Kornbluth and consults with him and other drs in the practice (team meetings) to discuss cases. He takes our insurance and my daughter got in to see him fast. [ more ]
mgmt10 Dr James Marion- The Mount Sinai IBD Center 17 East 102nd Street 5th Floor New York, NY 10029 Tel: 212-241-8100 Really smart, great IBD specialist but is a bit of a pompous a** if you can look past that. [ more ]
Lambiepie Dr. Thomas Ullman, also with Mt. Sinai in NYC. Good doc, really nice, calm guy. Busy office, though. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Conception & Pregnancy
L Lradam
Lradam Thanks ladies for the great info. I've started a prenatal vitamin and a midwife suggested royal jelly to prep for implantation. I have a preconception appt in about a week to make sure everything is on track so my fingers are crossed. I only worry so much because we haven't used birth control for a year and I still am not pregnant but we haven't necessarily been trying either so I'm hoping it's mostly a timing issue. [ more ]
clz81 It is generally recommended on this site that you wait no longer than 6 months to seek fertility consulation as you may have scar tissue issues/blocked tubes from your surgeries. Not to say you'll have any issues. I was able to conceive on the first try 6 months after my takedown. As it was my second child, I had a vaginal delivery. All worked out great. You shouldn't have any issues with nutrient absorptions. Vitamins may not agree with your stomach due to nausea, but you can usually find a... [ more ]
LC I wholeheartedly recommend the Glow Period and Ovulation tracker. I am currently 14 weeks pregnant against all odds probably thanks to finally timing sex perfectly and some luck. I had one of the worst case scenarios for infertility. My colon actually perforated and I had a three step J-pouch. I had/have terrible adhesions that I had to have laparoscopically removed by an OB/GYN who told me my tubes and ovaries were terribly scarred. One of my fallopian tubes had even been forgotten stapled... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Ache in left butt cheek??
B bethany365
Holly M It will be 3 yrs since my surgery in Feb and I used to get that ache in left butt cheek all the time, others said theirs was in tailbone area. Now mine only really bothers me if I start having to use the bathroom alot more than usual. It is a sign for me now that I am in a little "flare" as I call it. [ more ]
Scott F It could be piriformis syndrome, which is surprisingly common. There are stretches you can watch on YouTube that can help considerably (if that's what it is). [ more ]
Lambiepie Do you think it could be sciatica? I get it occasionally and it stays localized to my buttock, not the common pain that goes down the leg. [ more ]
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J-Pouch ForumsGeneral Discussion
VSL 3
RPKRPK
Scott F It's generally not prescribed in grams. It could be dosed in capsules, packets/sachets, or CFUs. The *maximum* recommended dose is four double-strength packets/day. [ more ]
TE Marie I use 2 sachets of VSL#3DS daily. I can't find a weight for them or on the box or packet. My drug insurance covers them, after I meet my huge deductible. It only covers DS, which means double strength. There are 900 billion bacteria with 8 strains of live, freeze-dried lactic acid lacteria. Can you call her/him back and ask for more information? FYI, I was using 1 sachet daily until a few months ago. The increase has helped me stay off of antibiotics for my pouchitis and I am feeling better. [ more ]
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J-Pouch ForumsGeneral Discussion
Who takes Elavil (generic Amitryptile)?
Mema 1Mema 1
TE Marie It took me 10 weeks to get my dose of it to 100 MG. The last 4 weeks I decreased my antidepressant medication 10 MG each week until I was off of it when I got to 100MG. I also had to go off of the migraine medication too so this may be why my Mayo neurologist had me increasing so slowly. My Psychiatrist just increase the dose up from 100MG in one big jump up to 150MG so I don't think your doctor was wrong by giving you a stronger dose at once. Please don't think that I am criticising her/him... [ more ]
Mema 1 Thanks to all. My plan is to cut the pill in half tonight and if I feel okay in the morning, perhaps increase it to the 75mg in a few days once my body gets used to it. As I said before, I think that it was the drug interaction that made me loopy. I'm finding today that the pains that I had been having were much less than they were before. I know that the pains and cramps are definitely caused by stress, and because I'm so very stressed at the moment, anything can set if off. Hopefully I can... [ more ]
TE Marie I am so sorry for your loss. I know the past months were difficult. I am taking amytriptline for my migraine headaches, IPS and depression. It's an antidepressant. As I was increasing the dose of it I was decreasing off of the other antidepressant I was on. I think you better take the medication as prescribed. I have had great results with it at 100 MG. No more headaches. Between the change plus by increasing my VSL#3 from one to two sachets a day my j-pouch function has improved. It was... [ more ]
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J-Pouch ForumsGeneral Discussion
Fiber supplements and water question
ATXGuyATXGuy
Scott F Lots of folks here have been advised to restrict water with fiber supplements, but I just don't agree. They work fine for me with plenty of water, they are safer with plenty of water (read the label), and I don't think J-pouchers should ever restrict water. This is all just my opinion. [ more ]
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J-Pouch ForumsGeneral Discussion
7 Weeks Out From Takedown Report, Concerns, Etc.
ATXGuyATXGuy
ATXGuy Currently only taking Align probiotic & a multivitamin. I tried some Metamucil a couple of weeks back, with unpleasant results. Will give it another go in a while, but it was pretty clear the pouch wasn't ready for it yet. [ more ]
dawn58 Not sure what you are taking, but Metamucil thrre times a day helped regulate my movements. [ more ]
Marianne77 Everything your going through seems pretty normal after surgery. I had lower back/tailbone pain for a while. I think it lasted almost 3 months. A heating pad under me while I slept helped a lot with that. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
:/
G gen1
Marls Im 22 years old too and nobody told me about fertility until after my surgery (i had mine at 18). It's scary because my whole life I've dreamt of having my own kids but we just need to stay positive since we still have a chance. [ more ]
Mika Like everyone already said it Might cause some problem getting pregnant naturally but it does NOT mean you are not fertile or that you can have more kids, You can always have IVF to go around the problem with great success [ more ]
Daisy18 Gen1, there is definitely the risk due to scar tissue. But just to give you some hope, I got pregnant post pouch after only 2 months of trying, with no problems. It is still possible :-) [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Scars reaction to pregnancy
M Mika
clz81 I second what babygoose said. I was worried about my stoma scar, but no issues other than some itchiness and some pulling. I used those stretch mark oils/body butters, which helped a lot. [ more ]
Mika Thank you! I'll try that [ more ]
babygoose Congrats on your pregnancy! I'm 31 weeks pregnant with my 2nd (had my first before surgery). My surgeries were laparoscopic and my stoma scar just gets itchy and feels like it's pulling sometimes. I use coconut oil on it and it seems to help. [ more ]
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J-Pouch ForumsGeneral Discussion
Joining the Navy/Military Jpouch
KilocunaKilocuna
dew You might want to try Nukeworker forum. Loads of good info there. [ more ]
Torg So I was in the Navy, but it was before I had problems with UC. My son has had his colon removed and had talked about wanting to go into the military. I told him I did not know what the rule was, but either way there are lots of ways to support the military and not be in. The DOD has a huge number of civilian works that are needed to complete the missions. [ more ]
douglasj I was turned down for UC. But best of luck to you. I have a serious problem with the military advantage outweighing the disabled advantage for government hiring when the disabled are not eligible for the military but that's for another time. [ more ]
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J-Pouch ForumsGeneral Discussion
Flu shots anyone??
PouchomarxPouchomarx
tulsamom Sad to say, I was making a serious medical decision without bothering to get to know the facts. Very, very unlike me. I guess I jumped on the flu rumor bandwagon before my obsession with researching everything. I kind of knew that one day I'd have to learn the truth. Thanks everyone for the info and the personal stories. They really hit home. I will change my stripes and join the group of people who take precautions instead of counting on luck. Y'all have a great, flu-free holiday season!! [ more ]
Jan Dollar Tulsa, Try not to believe what you hear, but believe the facts, such as those in the link from the CDC that Scott posted. There are a lot of people who spread untrue things about vaccines. Yes, the virus for most vaccines are grown in eggs. That means that if you are severely allergic to eggs, you need a special type of vaccine. It does not mean you cannot have any vaccines. If your allergy is mild, you can have the vaccine with precautions. You CANNOT get the flu from the vaccine. You can... [ more ]
rachelraven Immunosuppressed people, like those on biologics, etc., and those getting things like IVIG should not get the nasal spray flu vaccine. Only the dead attenuated virus in the shot form is safe for those folks. [ more ]
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J-Pouch ForumsGeneral Discussion
VSL3
Paul HPaul H
jim 123 Hi Paul I just dropped by for a visit ... I am 8yrs post TD. My experience ...loperamide made no noticable difference ... codiene works...metamucil as recommended Dawn works. I still take one 30mg codiene before bed and get up once for BM. Snacking at night contributes to more bedtime interuption. I used VSL3 several years and am convinced it helped, then one day decided to stop .... several years later do not see need to resume. [ more ]
Scott F It would be reasonable to take a lower dose of VSL, or none at all. Until and unless you learn that you are prone to pouchitis there isn't a lot of proven benefit. Alternately, you could try it for a month or so and see if you notice a difference that's worth the money. [ more ]
Paul H Thanks Scott & Dawn, I can't get it on prescription here & it's expensive, my GI says not to bother but then I feel more informed than him. You think 1 sachet normal strength will be of any benefit in keeping pouchitis at bay? I take Plantago Ovata (same as Metamucil) at 3.5g doses x 3 per day which is about the same as a tablespoon, it helps greatly but not with the night time visits. You're doing really well at 3-6 visits, I hope to be like you soon`. Continue being well. Paul [ more ]
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J-Pouch ForumsGeneral Discussion
Update - Cleveland Clinic Drs. Remzi and Shen
aka KNKLHEADaka KNKLHEAD
aka KNKLHEAD Wow, Poucho, sorry about that .. I think I understand -- this will be my "third" pouch, pretty much and the bag has been kind to me, honestly! [ more ]
Pouchomarx I am 99.9% sure i wont go through with revision cuz the odds are there that the 2nd pouch will have issues as well. I have had my loop ileo since February and I am giving Shen one last shot at closing this tip of j leak, which he gives a 50/50 chance. Odds have not been in my favor since initial surgery in 2008 so not giving this much hope it will work but i will let him try it. If not I think I will stick with what i have for now, i'm in no rush to have any more surgery. I hate this bag but... [ more ]
aka KNKLHEAD Just in the off chance that someone is still reading my novel, since my last surgery in the spring of this year (2014) with a loop ileo I have felt phenomenally well and perfectly normal (albeit a bag of poop on the front of me!) I have gained about 35 pounds, had comments like "are you lifting weights," and truly feel like a normal human. The ileostomy for me is very easy to deal with and tough decision for me to decide to go to a revision knowing how much "fun" I've had dealing with... [ more ]
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J-Pouch ForumsGeneral Discussion
Weight gain
CherjpCherjp
Jan Dollar Many of us would love to have your problem! I am one of those who seem to have a most efficient small bowel, and not a calorie goes by unabsorbed. But seriously, if you are otherwise fit and healthy, I would not be much concerned about being unable to gain weight. If you have ruled out things like celiac disease and Crohn's, this may just be your set point. Some people are just naturally thin. I believe the primary problem would be when you are ill and unable to eat normally. You won't have... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Healthy diet
C ColoradoCarrie
Mika Hi, I'm new here, so thank you for having me, I think from reading the posts, that the one thing we all have in common (beside the pouch is lack of guidance regarding diet. I have had my pouch for the last 16 years( since the age of 16) and it took a lot of time and painful attempts to find out what works and what not. For me it is a lot like GinLyn, no cabbage, no passion fruit or other things with rough grains, certain greens. As for things that help get through the day if it is a problem... [ more ]
skn69 Wow Rachel, Your diet sounds almost exactly like mine and I have a k pouch! I guess that having a narrowed exit would mimic the same challenges that k pouchers deal with getting anything to flow out of a tube. I do really well with a hand held blender most days...the stuff that is really problematic but I love gets thrown in with a little fluid or juice and blended down to a smoothie...things like pineapple and other mega fiberous fruits and certain salads that get turned into gaspacho (cold... [ more ]
rachelraven I ate everything for the first 20-ish years, apart from Portobella mushrooms (had a terrible event with one in 2000; never again). Last 3 years, specifically, I have to be more careful. My outlet gets a bit narrow, so hard to digest things are bad for me. I definitely avoid most nuts (for me, almonds are the WORST), seeds, corn, peas, mushrooms, quinoa (woah, THAT was an experience - glommed up into a horrid ball, I could barely get it out, flew out after I nearly stroked bearing down to get... [ more ]
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J-Pouch ForumsGeneral Discussion
Is it uncomfortable to "hold it" and for how long?
KeepMovinOnKeepMovinOn
Marls I don't tend to have any problems with holding it. I always make sure to empty before going somewhere, and before working out. It gets a little uncomfortable when I'm sitting in a quiet lecture and holding it because my pouch gets grumbly from the gas even if I went before. People near me always asks if I'm hungry and I just knod my head and laugh. Airplanes make me a little nervous since I hate using the bathroom on them and also using porta-potties at events [ more ]
CeeeeCeeee One thing (among others) that I really love about having a J-pouch is that I can empty it at will prior to long trips, etc. Never ever could I do that when I had a colon! Even when my colon was healthy, I was at the will of when it was ready to empty. When my UC was in full swing I never was given a choice! So.....what a blessing it is to visit the toilet before I leave my house or somewhere else and empty my pouch! My takedown was over 10 years ago. [ more ]
CTBarrister There are no problems holding for me unless I have flaring pouchitis. My pouchitis, although chronic, is usually under control but ocassionally between antibiotic rotations it will flare badly and this will cause a sensation of urgency, increased BMs and also night-time leakage, until the situations is brought under control. Even with aggressive treatment flares will happen, which is why they call it chronic refractory pouchitis in my case. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Extreme bloating, gas pains after anastamosis
M MaryMomof3
CeeeeCeeee Also, gas rises. Assume "the position"! Get on all fours and put your butt in the air. Try lying on one side or the other. Or, lie on your back with your butt elevated on a pillow. In any of those positions, try coughing hard but be prepared by having something under you to receive a "wet one"! It takes trial and error. It does get better. Really! [ more ]
Judy1 Hot bath. heating pad and WALK, WALK, WALK!!! [ more ]
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J-Pouch ForumsK-Pouch Korner
Who did your kpouch and what holds it in place?
K Kelsie
skn69 Kelsie, Where are you in the U.S.? I know that Dr Cohen at the Mt Sinai hospital in Toronto Canada seems to get all of the 'difficult' cases and does the k pouch anyway (think about Eric, Dixie, me and many, many others)...he sort of is the 'never give in, never give up' kind of guy. Devoted. What exactly is Pots? I know that the ehler's-danlos is not very well known, even around here, although I am encountering more and more specialists who at least know what it is (10 yrs ago they looked... [ more ]
Kelsie Interesting you have the Ehlers-Danlos problem. My daughter also has pots and that is very common with pots. It just makes me go hmmmm. Every Stoma she has had has retracted (even the revised ones) her pouch prolapsed and they think its maybe due to not forming scar tissue or adhesions. Her body is weird that's for sure. And she has always been atypical. In all her years of severe pan colitis her inflammatory markers were NEVER off. Labs would tell us nothing and even scopes looked good... [ more ]
skn69 Kelsie, I am a very, very bad example and hardly 'normal' compared to most people and their healing process. With D'Heller's-Danlos syndrom my body doesn't form connective tissue which is at the origin of most of my medical problems. Every surgery, even the simplest ones lead to more to fix the original ones. Even the removal of a cyst or beauty mark ends up being a big thing...6 weeks with sutures + staples + steri strips. And even then there is no promise that I will heal. My original k... [ more ]
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J-Pouch ForumsGeneral Discussion
Lettuce
S stellababy
AllyKat I can to,erase a tiny amount of lettuce but a huge salad is off my plate as its my number one cause of blockages, after brocoli. [ more ]
Spooky This is kind of a loaded question, as it's a highly individual thing. Many j-pouchers can tolerate lettuce in moderation, and yes, for the first 4 or 5 years post takedown, I ate salads all the time and didn't have any issues whatsover. Unfortunately over the last 1-2 years I've had increasing problems with adhesions, such that I've had to limit my intake of certain foods, lettuce in excess being one of them. Basically, the bottom line is, YOU are the only person who can really decide... [ more ]
Scott F There's always a reason for bowel kinking, but that doesn't mean it's predictable. If it seems completely mysterious it's usually adhesions, and they usually do unkink on their own after making you sufficiently miserable. Adhesions can afflict anyone who's had abdominal surgery, not just J-pouchers. I have some adhesions, noted on a subsequent unrelated surgery, but I've never had a blockage. I don't limit my diet other than a bit of moderation. [ more ]
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J-Pouch ForumsPouchitis
alleykat question
R Rebe0505
AllyKat I'm trying to work with patient asst to get my cost down but I have to jump thru hoops first. I have to get regeted from two NYS state agencies before I can apply for a hardship appeal and then still might not win. So for now it's $ 125 dollar a week drug [ more ]
ks1905 I've been on Xifaxin for 3 months and it is finally working for me, I had to add Entocort to the mix to get a good response. I have the same problems as AllyKat with the other antibiotics they give me yeast infections (Thrush) if I am on them too long. I end up treating the Thrush and the medicine instantly makes my pouchitis worse. I was just looking at my Pharmacy claims at my insurance company's website and they were charged $1,707 for a 30 day supply for Xifaxin and they paid $1,436 for... [ more ]
Rebe0505 sorry to hear that..my brand drugs for sinuses definitely better with florida connection than my insurance..i guess it depens on the drugs.. [ more ]
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J-Pouch ForumsOstomy & Skin
sick with sore throat and cough, ostomy is straight liquid
dgtracydgtracy
Lambiepie dgtracy, I certainly hope you're better by now! Mysticobra, all I can say is not having diarrhea is the silver lining for you, although getting up all night to go is not fun. I always joke that I get diseases but I don't get sick . However, I've had two upper respiratory infections in the last six months. Each time, I had constant migraine and cough but my pouch was on its best behavior. I seem to recall the same experience when I had my stoma. Our colons play so many roles I never knew... [ more ]
Mysticobra I am just getting over a double whammy. Flu and strep. I felt terrible. But... I thought taking antibiotics would give me diarrhea but just the opposite. I have a j pouch and would not go to the bathroom the whole 8 hrs at work. Just before I would leave I would force some out... Easily I might add but then I would be up and down all night and still am.... going bm. Weird. I have had it for two weeks now and it is finally subsiding. Now I don't know how it would affect me with a bag. But... [ more ]
dgtracy Well i must say its a relief knowing its normal but also sucks its like this. crossing my fingers that this goes away soon. thanks you two. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Help/advice
C cherylzahajko
ValerieK Sounds normal to me! Your pouch will take at least 6 months to mostly adapt, and then a full 2 years to get as good as it gets...from my experience and what the doctor told me. Metamucil WAFERS are very helpful...but, it has to be the wafers. Keep in mind that all people normally pass gas while they are sleeping, so it may be that a little leakage at night is a reasonable event. At best, I can go 4 hours while I sleep. I leak at night mostly when I have pouchitis (which has been pretty... [ more ]
Arnaud Could be due to incomplete emptying of the pouch. In this case, emptying the pouch thoroughly with a catheter before going to bed could help. See the thread "self-catheterization" for details ... Good luck, keep us posted [ more ]
Mattenheimer My friend, it is very normal. It took me about 6 months to see major results. Hang in there my friend. It's a long journey, but for me it's bit'sso worth it for me. My surgery was in 1996, and I got up 3 times last night. It's not always like that, but sometimes it is. I Thank God for my surgery as I've gotten my life back with some ongoing issues. Way better than the daily pain I lived with for years. Praying for you. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fistula at takedown
JeffHJeffH
Kelsie After watching and dealing with everything my daughter went through and is now going to a perm ostomy this would be my suggestion. Have the surgeon fix them surgically and wait for takedown. Give them time to heal and see if any more pop up. I don't think I'd give up completely quite yet. But it is your call and you know when enough is enough. Everyone has their own threshold. My daughter has seen enough of her life wasted with pain and surgery and has her mind made up. Removal is set for... [ more ]
JeffH Thanks for all your responses. Met with the surgeon again this week and he seems confident he can close them based on his past experience. He said he would only proceed with the takedown if it was very straightforward. More likely it would wait to ensure that no more fistulas form. [ more ]
desisn00ps I would cut my losses. Fistulas are very difficult and in my case, once one formed from the pouch, more kept forming. The one thing I can say though is that I tried everything and have no regrets whatsoever. Think long and hard about this because maintaining a j-pouch that has a tendency to fistulize is difficult and painful. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Who removed your pouch? Results?
K Kelsie
Kelsie She has a surgery date of December 26th! She is relieved. She is not interested in a continent ileostomy after she found out more information. Personally I don't think she would be motivated enough to follow all the post op instructions. Change her loop to an end, take out that pouch and away we go! Oh and sew up the bottom. . They are saying a three day stay. That i will have to see to believe!! Haha. She is notorious for complications. Interestingly our surgeon said to not do the BCIR... [ more ]
BillV I was in the hospital for the customary 21 days for the j pouch removal and creation of the BCIR and my bottom was completely healed when I was discharged. I had no discomfort there during the 12 hours (sitting most of the time) trip home. In response to your other post, I have read posts by others who had their jpouches left in and a temporary or end ileostomy created with no necrosis. I would ask her surgeon about the advisability of attending classes in mid January. In my opinion, the... [ more ]
Kelsie Thank you for the response. Yeah she has had 8 abdominal surgeries in 3 years with more to come. That doesnt count the minor 2 she had not to mention all the exams under anesthesia. And the chronic abdominal pain she has now. She does not form adhesions at all and I worry that will make her a poor candidate. May I ask how the healing of your bottom went? She is hoping to get this done by the end of the year so she can start classes mid January. Two are online and one is at the local college... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Kind of a personal question...
K Kelsie
Kelsie Thanks for the replies! I had in my mind it would look the same only not have an opening but then wondered if it would be just a line. We will ask her surgeon. She said she doesn't care but I'm curious! If I was a cat I'd be dead from all my curiosity. Must also be the nursing student in me. . They told us sometimes it has a hard time healing and might need packing. Again, nursing practice!! :/ lHetti I sent you a pm asking more questions. Hope you don't mind. Sharon I don't know how you do... [ more ]
LHetti I suppose it looks the same, just doesn't have an opening. Compared to all my perianal issues and r/v fistulas, my skin down there looks amazing now after pouch excision and a barbie butt! [ more ]
skn69 I highly doubt that mine is 'normal' but... They did not close it off completely but allowed it to close on its own sort of. So, it is sort of 'not very pretty' but then again, how many people look down there? It doesn't look like Barbie's butt...that is for sure. Not 'flat' or creased but sort of scar tissue. I am sure that they do a better job today than they did 35yrs ago so have her discuss it with her surgeon to find out how he deals with the closure and how it is going to look. She is... [ more ]
See all 3 replies...
J-Pouch ForumsWomen's Health & Pregnancy
?pouchitis tx during pregnancy
roxzroxz
Mrs. H. I had pouchitis later in my pregnancy too (for the last 5 weeks). I've never had pouchitis where I've bled until getting it when I was pregnant. My doctor put me on cipro and flagyl. Those worked as long as I was on them, but once I went off of them, the urgency and bleeding came back. I was induced a couple days after my due date and immediately all of the symptoms disappeared. Things will get much better after your little person stops putting pressure on your pouch. All the best with... [ more ]
clz81 I was on Augmentin my entire pregnancy and while nursing. Flagyl is also ok to take in your 2nd and 3rd trimester. Don't worry...many women get pouchitis while pregnant. [ more ]
roxz I should also mention I am 35 weeks tomorrow. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Diet and comfort etc...
RJG-RossRJG-Ross
RJG-Ross Actually, rereading that last comment, I feel that the situation with J-Pouchers is a bit more urgent than just taking it easy with destiny/existentialism etc... Truthfully, we MUST encounter easier comfort... and responses/solutions to our concerns... This truly isn't an armchair situation... And you just witnessed my very own arguing with myself. Ross [ more ]
RJG-Ross Rachel, wow! You are awesome! Without the blast you know that you aren't through. But, truthfully, it's when I can relax as if I had succeed in something, relax into other things... pouch cleared = mind cleared. Truthfully, I don't know why I suddenly started tolerating apples a few years back and use them to remove digestive problems when they used to cause horrible problems... It's not so much about bearing burdens; although it is disconcerting for me, it seems that there are certain... [ more ]
rachelraven Lentils make me gassy, but I tolerate red lentils better than green/brown/yellow ones. Apples do, too, but I did FODMAP and they're a trigger food for me. A slice or two is ok, though, peeled. Yeah, it's definitely trial and error. Also, try small portions of the offenders within a meal that doesn't bother you to see if that helps. Gassiness never bothers me, because I like that blast to help clear the pouch, lol. [ more ]
See all 43 replies...
J-Pouch ForumsGeneral Discussion
j-pouch vs. non j-pouch
LambiepieLambiepie
Lambiepie Pluot, my surgeries were all in 2010. Once I put my weight back on, I knew I was healed but it took three years. Rachel, I'm the same way. I have diarrhea now but I'm not going as many times as usual. Misticobra, whew! I hope you're feeling better now. I don't usually get sick - one of the benefits of constant antibiotics?? - and I just felt so dragged down at first, now just stuffy. I started to wonder if our colons play a role in fighting infection and viruses, along with its other roles. [ more ]
rachelraven I never noticed a difference, unless it's GI in nature, and I get dehydrated faster and end up at urgent care for fluids often. Especially if it's vomiting on top of diarrhea. If it's just diarrhea, I can usually keep up. [ more ]
Mysticobra I came down with the flu and strep throat a week ago double whammy.... and feel like caca. I was wondering the same thing. I used to be able to handle it and bounce back pretty quick but this is dragging me down. I have to push myself hard to just get thru the work day. I am not contagious anymore. Otherwise I would stay home but my contagious period was unfortunately over the holiday weekend. That's good that I had the time off but bad that it ruined my holiday. I mean it was an hour before... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Incontinence right after surgery
M MaryMomof3
Toddi1973 Hi Mary, I take 2 large measuringspoons full of Metamucil per day. One in the AM, one in the PM in 8oz of cold water. The trick is to guzzle it quickly before it 'coagulates'. I use the orange tasting kind and find it OK to drink. How did I know the Ileus had resolved. Lets just say it was the most anticipated fart of my life. Once I passed air I felt my insides move and started on clear liquids right away. Tolerated those and was on my way to real food very soon. Hope your Ileus clears up... [ more ]
dawn58 I take a tablespoon of metamucil before each meal. Had my takedown end of August. What a difference the metamucil makes. It even helps with the butt burn!!! [ more ]
MaryMomof3 Thanks Toddi! I meant to say the stool is fairly NON odorous at this point - I haven't been eating. How much Metamucil do you take? What form? How often? Also- how did you know your ileus resolved? [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Food discolorating stool?
B Burrism1
JHendrix Ok. I am going to go ahead and ask this question. Sometimes, particularly in the morning I have very very pale stool. Almost white, sort of light yellow. I keep telling myself it's psyllium but I do wonder. Any thoughts? [ more ]
skn69 Rachel, I had the same veggie chips last week...I almost called the ambulance! The first time I emptied my pouch I freaked out, the 2nd time I thought that I had torn something...it took til the 3rd time for me to remember those darn beet chips. By the way licorice, jelly beans, all of those gummies and just about anything that has food colouring..including icing (darn red cupcakes!)... In the begining you may need to keep a log of foods you eat...just to prevent panic. Sharon [ more ]
Jaypea Oh yeah, red Gatorade2. I thought I was bleeding to death. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Cialis
T TimD62
CTBarrister I have used cialis strictly for sexual reasons and it works extremely well for that purpose. I have not noticed any "fringe benefit" to the pouch but keep in mind the pill is only effective for 36 hours. It's also hideously expensive. 4 20 mg pills with prescription will cost about $154 (and that is with my 15% AAA discount for all meds not covered by insurance). By the way if you go on the cialis website you can print off a coupon that will get you 3 20 mg pills FREE. It's a one time trial. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Hair loss
K KeepFighting(Manny)
KeepFighting(Manny) Thanks for the responses. I'm currently on remicade for crohns that I developed after having IPAA surgery and I was just told hair loss is a potential side effect. I was on humira first and broke out with red bumps all over my body (that I still have) and now with remicade, I've lost over half my hair. Its always something. [ more ]
Spooky Yes, after my emergency colectomy, I lost about 1/3 - 1/2 of the hair on my head. My hair is quite thick and the pattern of hair loss was diffuse, not in patches, so luckily it was not immediately noticeable to people who didn't know me. What was worse was when it was growing back in, as I had a fringe of shorter hair sticking straight up on the top of my head, not unlike a porcupine. LOL. I lost my hair due to a combination of malnourishment (I had very rapid weight loss), anemia,... [ more ]
skn69 Manny, Generally I get severe hair loss post op due to the anesthetic, after a long illness, certain meds including some antibiotics and pain meds (no scientfic proof on that one) or when I cannot eat for protracted periods of time (like when my pouch is non-functional)... According to my dermatologist and a nutritionist all of the above cases are normal...the body uses its energy wisely and concentrates it where it is most needed...the primary organ functions...unfortunately hair, nails,... [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Hemorrhoids and leaking
shakedownLgshakedownLg
Jan Dollar One reason they might prescribe the enema over the suppository is cost. There are generic mesalamine enemas, but not for the suppository. Your plan may require failure of cheaper options before expensive ones are covered. Also, sometimes those suppositories can cause local irritation (they are pretty large). Jan [ more ]
shakedownLg I was wondering why they would give me an enema rather than suppository. I have a call in to my DR now and I am hoping to get on a round of Cipro too. I am starting to think Pouchitis is an issue right now as well. I will ask about the foam too. Thank you for your suggestions! [ more ]
Jan Dollar Mesalamine is not a hemorrhoid treatment. It is for UC, so this confuses me, unless you have cuffitis that is making your hemorrhoids worse from the nearby inflammation. How about trying mesalamine suppositories (Canasa)? Easier to retain than the enemas. Another option is rectal cortisone foam (Cortifoam). It does sound like you have pouchitis too. Have you tried a course of antibiotics? Jan [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Hepatitis?
UH UK husband
Jan Dollar Autoimmune hepatitis and non-alcoholic fatty liver disease (among other liver diseases) are associated with UC, and can occur long after colectomy. Could be the antibiotics, but could also be IBD related. I am surprised her doctors did not tell you this. http://www.ccfa.org/resources/...disease-and-ibd.html Hopefully, she'll be on the mend soon. She will need to be mindful of her liver for now on, but that does not mean this is the end. I have been living with fatty liver disease since 2004,... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Anyone know if you can go to end ileostomy and remove the pouch later?
K Kelsie
Kelsie Thanks Jan. we will find out more this week and next as she has apps both at Mayo and CC. This has just been a long 3 1/2 year nightmare with 8 abdominal surgeries already and needs to end! As great as the kpouch sounds I worry it will just bring more problems. [ more ]
Kelsie Because she already has a loop and it is retracted so some stool is getting through and she had a pouch pexy done and we believe it has torn. If that is indeed the case she is done with the pouch but we don't have the time for the amount of healing it would take for a kpouch nor is it likely we can even get it scheduled before the end of the year. She is in a lot of pain and the stool getting through only makes it worse. If the above is true and she is told she is not a candidate for the... [ more ]
Shainy just curious, but why would one choose an end vs loop in this situation? [ more ]
See all 4 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Has anyone experienced pouch cramping due to baby's position/ kicking?
A Ali_Johnson
Ali_Johnson Thanks for your response! I guess that's exactly how I would describes them...lol. Well it's good to know I'm not alone. Thanks again! [ more ]
Breezie I had constant "butt cramps" during pregnancy; constant . Unpleasant, painful, disruptive. Sadly, the only thing that helped was the arrival of my son, who arrived six weeks early. I hope things are different for you; every pregnancy is different. If not, console yourself with the thought that it will soon be in the past once that baby is in your arms. Good luck! [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Pharmacy/ Medication
AllyKatAllyKat
Judy1 Sorry I didn't see this until now. EPIC.......anyone 65 or older earning under 75,000 single or 100,000 if married. Must be enrolled or eligible to be enrolled in Medicare part D. New York State residents only. [ more ]
dawn58 Seems something is going on with Xifaxan. I got a letter from my insurance company saying starting January 1, 2015 I will need a precertification. Not sure why. Guess it's expensive. [ more ]
Scott F AllyKat, I sent you a PM weeks ago offering to send a bunch of unused Xifaxan I have. Did you see it? [ more ]
See all 6 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

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

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