Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsGeneral Discussion
Board Taken Over By Rigged/Inaccurate Surveys
CTBarristerCTBarrister
Jan Dollar CT- I was not going to respond again, but felt that I needed to. Yes, this would be better suited to the Rant and Rave forum. But, that really isn't the point. While you may think your criticisms were completely fair and accurate, there were so many over-the-top descriptive adjectives that it came off as insulting and completely unfair. Your valid points were lost in hyperbole. This isn't a court room, just a friendly forum. I am sure your intent was not to insult or come off as superior,... [ more ]
CTBarrister I probably should have posted this thread in the "Rave and Rant" forum but otherwise everything I posted is completely fair and accurate criticism. If none of you believe there should be any minimal standards of fairness or accuracy in posting surveys, then there isn't going to be. I get that it's all anecdotal but to me anecdotal information should also make some sense. The one response here that is well taken is Scott F's point that if it's annoying I should just ignore it. That is advice... [ more ]
Hockadoo Thank you, Jan. Well-stated. Maybe some people just need to add a chill pill to their list of meds. [ more ]
See all 21 replies...
J-Pouch ForumsHelp! Need advice now!
Problems 9 days after J-Pouch Surgery
RR Rafal Rybak
skn69 I am so sorry, this is adding insult to injury! First off, I agree...the mucus slows to a halt after a while...mine did stink horribly (no one warned me about that pre-op)...they did my total colectomy 5 months after my k pouch creation... A couple of suggestions for the bag change....try doing it in the bathtub or shower...makes clean up easier...also 1sth thing in the morning on an empty stomach... I have a k pouch and with every surgery I had to wear it hooked up to a tube/flange/bag... [ more ]
deweyj oh boy I am sorry to hear you feel so discouraged. but take heart the early days are the worst days. Rachel is spot on, the mucus discharge from your bum will slow and eventually cease. 9 days out is very early days, not sure if youre still on pain meds, that might or might not have anything to do with control. as to odor, how frequently are you changing the appliance and maybe consult with other suppliers, I hear nowadays they make a variety of bags with filters etc. might also be the food... [ more ]
rachelraven The fluid from the pouch/your bottom is not indicative of how things will be after you have your takedown. Intestines create mucus, always, but with stool mixed in, you rarely see it. After my surgery, at first, I couldn't control the mucus discharge, but slowly it became less and less. My surgeon used the decrease of it as a way to gauge when I was ready for takedown. For me, that was at 4 months. However, you mention a foul smell; my discharge did not have any real smell at all. Maybe ask... [ more ]
See all 3 replies...
J-Pouch ForumsPouchitis
continuously on antibiotic s ?!
B Ben552
deweyj I would tend to think that going off when possible would be best. it does seems like many meds you can build a tolerance for them, rendering them less effective over time. when my dx first was changing to crohns, we tried rotating three antibiotics on a monthly basis, Flagyl, Augmentin and Xiafaxin. it didn't work for me and I ended up with an allergy to Augmentin. I finally went on Remicade which I had resisted initially and when that kicked in it was wonderous. I wonder if your doctor... [ more ]
jeane I was doing pretty good until I overdosed on potato chips. As a result, I am fighting a nasty case of pouchitis at this moment. Just awful when it hits. Sugar too bothers me. [ more ]
Scott F If I could go 2-3 months symptom-free without Cipro I'd definitely take the breaks. You might want to pay very close attention to when symptoms return, so you can restart the treatment without delay. [ more ]
See all 4 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Plastic Surgery consult for hernia repair
GaylaGayla
Jan Dollar Typically, insurance covers only that which is medically necessary, with the exception of the face (because of the significant emotional trauma associated with it). Medically necessary plastic repair usually involves the hands, feet, and joint areas. Tummy tucks or similar surgery may be covered if the surgeon can associate a medical problem with it (like fungal infections from overhanging abdominal skin with extreme weight loss). Scar revision due to pain or restricted movement may also be... [ more ]
skn69 I have had about 1/2dzn hernia repairs over the last 7yrs...and at least 5 abdominal reconstructions (in small doses)... My laporoscopic surgeon does mesh repairs on me each time (I seem to spring lots of leaks in my abdomen!) but he doesn't fix the esthetic aspect (only makes it worse with all of those tiny holes...looks like I have the measles) and my plastic surgeon did one surgery with general that he mightily botched (passed it on to an intern who did only half the job) so he has been... [ more ]
See all 2 replies...
J-Pouch ForumsWomen's Health & Pregnancy
33 weeks and miserable
TD Tracy D
Tracy D Thanks for checking in! Had a pretty good week-normal pregnancy things but not j-pouch related! Once I threw up on Sunday I got much better. Working on staying hydrated. I see my OB on Weds. so I'll make her aware. [ more ]
clz81 Tracy, any updates? [ more ]
clz81 Hi Tracy, As it's 2 days later, I hope you are feeling better!!! Let's hope it's just a bug and nothing more. However, based on your symptoms, my first concern would be gall stones (abdomen pain, upper back pain, vomiting are all classic symptoms). They are much more common during pregnancy. Nausea, pain, and vomiting can also be related to a bowel obstruction. You'll definitely need to be evaluated if the symptoms don't subside. Hope you either are feeling better or have some answers!! [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Leak in j pouch
*Zoe***Zoe**
*Zoe** Hi Jan Thank you for your reply. At least I know I do have hope. My pouch is so precious and I really want the best for it to operate well. I am sure everyone feels the same way who go through this procedure. [ more ]
Jan Dollar I had a 1-step and developed a presacral abscess from a leak. It caused a lot of pain and a high fever. I was hospitalized and a drain was inserted and left in place for a month (I was sent home after 12 days). I did not need further surgery. This was in 1995 and I still have my pouch. Jan [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
consistency of bowel movements
ranilynn74ranilynn74
ranilynn74 I had an mre on Monday and lots of bloodwork. Going for a pouchoscopy (my first one in 11 years) and endoscopy in 2 weeks. I have recently been having some excruciating pain, but it only lasts a day and then doesn't come back for a couple of months...so weird. I'm actually very afraid of having a pouchoscopy and that's why I have waited so long. I tried to find a dr in New Jersey, but I couldn't, so I am back with my dr. in NYC that I trust, so hopefully I will be all fixed soon! [ more ]
tf Hi, I can say 15 x a day isn't normal. Were u checked for c-diff? I recently started going over 7 x a day and a lot of diarrhea and I was checked for c-diff, this is about 3 x I have it. Other than that my stools are in between depends on the day and what I eat a very big part of it. The FODMAP diet really helped. Yoga and PT pelvic floor therapy made a big difference. I feel for ya & all of us who have to battle this day in an day out. Thankful for this website I have received many good... [ more ]
Jan Dollar Yes, there is no one "normal." Just like with people with a colon, there is a wide range of acceptable function. What matters most is that you feel well. Consistency and frequency varies with each person, their diet, and whether they choose to take medications to control it. Bottom line, if you do not have urgency, cramps/pain, difficulty emptying, or bleeding, and you feel well, then you have nothing to worry about. Jan [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Hernia Surgery
F FrankH
skn69 Talk to him...maybe he is willing...mine wasn't...depends on how nice they are or are not... The worse thing that he could say is no... Sharon [ more ]
Gayla I have 4 hernias but was wondering if my plastic surgeon that is doing the repairs could make my stomach look a little better with out it being labeled as "cosmetic" surgery. I am really hoping my insurance will pay for a little more than the hernia repair but I am afraid since the defects are not on my face and on my abdomen that they will say it is cosmetic. I just have a big bulge above where my stoma was that bothers me through my clothes. I guess just wishful thinking. I thought maybe... [ more ]
skn69 I had my hernia repairs done by my laporoscopy surgeon and my abdominal repairs (with a hernia repair thrown in for the fun of it) done by my plastics guy...I've had about 4 of each....I only wished that one of the 2 would have been able to do both! Would have saved me a lot of anesthetics! Good luck...most often the plastic guys can do a simple hernia repair. Sharon [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
VSL#3
K kubrider
judyk Exactly, I was supposed to take it 2x a day, not 4. If the need arises I will look to you for tips on how to fight the insurance. Life is hard enough without putting up with such BS!! Judy K [ more ]
Scott F For a maximum dose (4 packets/day) it's about $600 for a 30-day supply. I fought like heck. [ more ]
kubrider Interesting Judy, I also have Anthem Blue Cross though not for State workers so maybe different. $300, och. I'll definitely put up a fight. Will let you know how I make out. Thanks for the input. [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Help, need to make scary decisions
AllyKatAllyKat
Lambiepie Originally Posted by skn69: Hi AllyKat, I am so, so sorry...I understand perfectly...you are at the end of your rope and all of the options that they are offering to you seem booby-traped...they all have potential side effects but sometimes we feel like magnets for anything and everything that can go wrong...so are pretty sure that if there is a side effect to 'catch' then we will... So hard to go from a success story to a full out disaster is so short a time...you have really tried it all... [ more ]
JLH What is ischemia? Oh I looked it up. No I have good blood flow. It sounds like a great option for you. allykat--ischemia was a result of the initial surgery--wan't appraised of this situation until years later. it's complicated Will they use your jpouch or make a new pouch? I hope u don't need to lose more intestine. the cleveland clinic doc says j is too diseased to reuse, so will use 80cm or so for the k. will ask him to reassess the situation when they take the j out. ( mind you bauer... [ more ]
skn69 Hi AllyKat, I am so, so sorry...I understand perfectly...you are at the end of your rope and all of the options that they are offering to you seem booby-traped...they all have potential side effects but sometimes we feel like magnets for anything and everything that can go wrong...so are pretty sure that if there is a side effect to 'catch' then we will... So hard to go from a success story to a full out disaster is so short a time...you have really tried it all thus far. I am a risk taker... [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
interesting study on 15 yr pouch deterioration
PouchomarxPouchomarx
JLH allykat looks like we are on two forums!! for a k pouch consult i went to dr. bauer, who is considered one of the top surgeons. he doesn't take medicare, which is the major reason as to why i am going to cleveland clinic. if you aren't on medicare he might take your insurance. while there i also saw dr. peter rubin for a scope. he is not a surgeon, but a fantastic doctor in terms of listening and compassionate. you might go to him for a second opinion? he's with mt sinai also, go to k pouch... [ more ]
AllyKat Entyvio is an option offered to me. JLH if you have pouchitis with the jpouch why do your Drs think with a k pouch you will not also get pouchitis? I never thought of asking about that option cause I figured pouchitis would come back with a k. Who did u decide to use? I'm in NY as well and need to make some choices soon. Thanks [ more ]
JLH entyvio is $$,$$$ and not sure all insurances cover it. lowFODMAP is easier with a dietitian's help, but i did figure out the diet myself. if you go on it get the monash app. it makes all the difference for me. will need to stay on it even when the pouch is out. pity, but a reality. we only manage the diseases, never resolve them. right? keep me posted. jlh [ more ]
See all 15 replies...
J-Pouch ForumsGeneral Discussion
Surgery cancelled today !!
PouchomarxPouchomarx
Connies Good luck and best wishes for a speedy recovery. Connie [ more ]
aka KNKLHEAD Originally Posted by Pouchomarx: can and cannot eat??? i ate normally today as i did yesterday. The surgery instructions stated nothing to eat or drink after midnight the night before surgery. Last night i didnt eat past 8pm and nothing to drink after midnight. Tonight i will have no food after 7 pm and no water after about 10 since i will be going to bed since checkin time is 515am i currently have my ileostomy still. Ah, yes. I remember! Cleveland Clinic does this right. I had an ileostomy... [ more ]
JLH Sending White Light starting as soon as I get up. So you are covered from the East. Hoping all the best. My surgery is on the 13th At CC. Janet [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Pouch removal
winter wishwinter wish
AllyKat Shawnee, Praying that things are turning around for you now. Also think age is a factor in the speed of recovery process. [ more ]
Lambiepie Shawne h, what a rough go. Sharon is right about the fluids. Dehydration lowers blood pressure and yours is so low already. It also exhausts you. I hope you turn the corner soon. [ more ]
skn69 My good wishes for fast healing from now on...so sorry that it has been such a rough ride... Please don't foget to drink. I know you are tired, exhausted and washed out but dehydrations aggravates all of those symptoms plus pain meds make things worse. What really helped me was keeping mugs full of ice water next to me and taking small sips constantly. You needs salts too...try canned soups like tomato or chicken rice... Soon the nightmare will be over but for now, a good laugh or cry with a... [ more ]
See all 14 replies...
J-Pouch ForumsHelp! Need advice now!
Feels Like UC All Over Again
M mrwizzer
mrwizzer ❤️
clz81 mrwizzer, to your questions about being on the antibiotics for a longer period. typically, your GI will prescribe you antibiotics over the phone based on your symptoms with your first bout of pouchitis. if it comes back, they will generally have you stay a slightly longer course. if then, symptoms still return, it'll be time for a pouchoscopy. from that, that can tell if you have a more chronic issue going on. i do have chronic pouchitis and have to treat it every day. [ more ]
Goentropo Originally Posted by chalmersd: My daughter has somewhat the same issue. She had a pouch revision in December and her take-down in May. She has been getting pain & spasms they believed to be pouchitis. sonce she is allergic to Flagyl, they put her on Cipro. She did very well while she was taking it but the symptoms quickly returned after she finished the prescription. She started feeling bad about a week ago and she was just admitted to the hospital with acute kidney failure they believe... [ more ]
See all 17 replies...
J-Pouch ForumsGeneral Discussion
Butt irritationthat's not butt burn
J J9Pouch
aka KNKLHEAD My doctor said that the itchiness IS irritation, and to use Calmoseptine or other protectant, even though I don't have butt burn. It has helped! [ more ]
Megan O Probably not what u are experiencing, but sometimes I get a yeast infection down there. I feel a slightly bumpy rash and it itches wicked bad. Miconazol cream applied a couple times a day knocks it right out. But for regular ole itch anything with menthol cuts the itch for me. I.e. triple bond lotion or calmoseptine [ more ]
Chayes I too also suffer from occasional itchiness. It seems to be most frequently linked to what I eat and my probiotic (if I forget to take it or when I initially started it). I find just keeping clean (using baby wipes ect) really helps and it usually only last a day or two at a time. Hope this helps. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Bleeding Since Takedown
JeffLoperJeffLoper
ciba I realize this post is over 2 years old, but I'm in a similar situation and I wonder if your symptoms have resolved, and what treatment finally worked. I have been bleeding with every BM for over a month (takedown Sept. 14) and I will have a scope this coming Friday to check it out. They are going up past the pouch to the point of ileostomy reconnection. I have been on Cipro and Entocort for 2 weeks without improvement. Did they ever figure out how to get your bleeding stopped? How are you... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Probiotics-Scary!
Y ytcrockpot
jeffp Your best bet is probably VSL#3. It has some research behind it and is available by prescription. I've been a guinea pig and wasted money on numerous brands that did nothing. Even VSL didn't work the first time years ago, not until I tried the newer double strength version. [ more ]
thumprhare Check out consumerlab.com. third party independent tester. It is a subscription service but worth it in my book... [ more ]
Scott F I like to say you're ahead of the game if a supplement doesn't kill you. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
J-Pouch and Polymialgia Rhumatica
smrdaz4lifesmrdaz4life
smrdaz4life Thank all for their experience. Just one more drug I do not want to take. I have many side effects to medication. Just wanted jpouchers experience with methotrexate. I guess it is my only way to get off prednisone. [ more ]
TE Marie I hate it when one specialist wants us to go off of a drug that is needed for a different health problem. My elderly father has faced this many times. I've had a few problems too. A friend of mine has polymyalgia R too. I took her to the ER with excruciating pain before her diagnosis and prednisone was prescribed. I can see your problem [ more ]
Jan Dollar Lots of folks on MTX with j-pouches. Inflammatory arthritis is pretty common. I have enteropathic arthritis. Not on MTX (yet), but it is on the table as a possibility in time. Jan [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
pouch redo...leakage issues?
PouchomarxPouchomarx
Brewbirds That is wonderful to hear! So glad things are working good for you. May I ask, what was reason for your redo: chronic pouchitis or mechanical issue? [ more ]
aka KNKLHEAD Originally Posted by Brewbirds: Aka knklhead- has your BMs increased with the redo as compared to your first pouch? I was told that this is likely to happen. .. exactly the opposite .. I have 4-6 non-urgent BMs a day, things are working very well, much better than my previous stapled pouch. IMHO, the issue isn't necessarily whether they staple or hand sewed, the issue is whether or not it's a good and sealed connection. [ more ]
Brewbirds Aka knklhead- has your BMs increased with the redo as compared to your first pouch? I was told that this is likely to happen. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
hospital stay things to take??
PouchomarxPouchomarx
Lesandiego Long multi extension cord (and chargers) that can charge all of your electronic toys. [ more ]
skn69 Spooky is right about the flip flops...I always wear them in the shower at the hospital...after having picked up athlete's foot during one stay and plantar's warts during another I no longer go into shower stalls barefoot (one more problem that I do not need to deal with post op)...that includes at hotels... I find that the cheap croc's knock-offs that you can pick up at the dollar stores work really well because they don't slip when you are on wet floors. Sharon [ more ]
Spooky Books or an e-reader. Also, bring flip-flops or hard soled slippers (but ones you can slip on and off easily, because for me, bending down to try to put on my slippers was painful in the initial days after surgery) A bathrobe or oversized sweatshirt is a good idea too. During one of my surgeries (second one, I was in for 13 days because I obstructed post-op, of course), I was stuck on a ward with 2 other patients and I ended up spending a lot of sitting on the benches in the hallways since... [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
Cipro/Flagyl side effects
HockadooHockadoo
aka KNKLHEAD I am sorry to say that I have no had good results from Cipro Flagyl, and finally discovered that I was allergic to Flagyl. But yes, it seems to me that taking these just beat me up! I'm not sure why. I am not sure how long it took to feel like I had more energy after taking, but I am sure it was a gradual thing. Hope you feel better soon! [ more ]
See 1 reply...
J-Pouch ForumsPouchitis
6 mp
AllyKatAllyKat
JJA I've been on Immuran (azithromicine), which I understand is similar to 6mp, for 2 years after 2 years of other unsuccessful efforts to get my chronic refractory pouchitis under control. I also rotate antibiotics along with it. (Rotating antibiotics alone didn't work, and when I stopped antibiotics while on the Immuran, pouchitis symptoms began to return, so for me it seems to be the combo of both together that is doing the trick). 2 years ago I cried when I saw my scope because my pouch was... [ more ]
thumprhare Have a friend that does. She reports good results [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
duke surgeon advice
MN marc nolan
Muddygirl I had my takedown in April 2015 at UNC. I did not have any history of UC symptoms. I went to the ER and was admitted. After 1 week of unsuccessful treatment for inflammation, I had to have surgery to remove my colon. Dr. Rahbar saved my life. I feel I doing great and I am confident I will be back to close to normal in one year as I was told. Note: My husband's PCP works at Duke. When I was faced with having to have surgery, he contacted her asking if I should be moved. She called him back... [ more ]
JeffH I'm in the process of surgeries right now with Dr. Sadiq at UNC (Koruda's protege). I highly recommend him and the whole team at UNC. I don't know much about Duke. My gastro team was most connected to UNC. I drive all the way from Asheville because we don't have anyone they recommend here.(Go Heels!). Good luck! [ more ]
dwd01 Since you are in the triangle, you might try Dr Koruda at UNC.... Did my surgery 4 or 5 years ok... Great talent.. nurses love him (that says a lot) and for surgeon, has agood bedside manner.... He teaches the surgery, and a real pro [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
ILEOSTOMY CHANGE TO A K POUCH
D dgr 123
BillV Other than a temporary ileostomy (which I hated with a passion) many years ago, I have not had an end ileostomy. I now have a BCIR, which is very similar to a k pouch in function. You can google k pouch and BCIR to get lots of information on these procedures. Although there are risks of complications for any major surgery, these two procedures have a very high patient satisfaction rate and under 10% failure rate where the pouch must be removed. A very large percentage of these procedures are... [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Rectal itching and bleeding
J JanetRose3
NancyJo Like, Zman, I use Prep H most of the time but I have had success with zinc oxide creams and also powder, depending on the situation. I do have a small hemorrhoid that flares up and that is when I have the most leakage, itching and a tiny bit of bleeding. I then go to a Prep H suppository. In other words I have an arsenal of remedies that I used and change up. I, also, have come to taking baths. That helps me all around, mentally and physically. [ more ]
NancyJo Originally Posted by Scott F: If it's fungal then the barrier creams might make it worse by keeping the area moist. Some folks have reported good results with Zeasorb powder. I find that powder does help help me as well in certain cases. I do it all, ointments,Desitin cream (zinc oxide), Talcum powder and PrepH ointment or suppository. [ more ]
KOB Originally Posted by JanetRose3: Does anyone with a j-pouch suffer from chronic rectal itch? Look, I'm 364 days after takedown so I profess not to be an expert, but I know itching for me is a precursor to butt burn and a result of overly acidic output. Unlike a 'normal' itch which goes when scratched, it seems to be the initial signs of irritation. If I've had something (even mildly) spicy to eat I get the itch followed by burning. So it is followed directly by some blood (usually the... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
surgery question ?
PouchomarxPouchomarx
mgmt10 He could be doing reversals which in most cases take 30 minutes or less. Yours is probably his only lengthy one. Good luck with it! [ more ]
Jan Dollar I can pretty much guarantee that Dr. Remzi does NOT have 5 pouch redos scheduled in one day! 5 procedures? Yes. Jan [ more ]
Scott F The 4-8 hours probably includes pre-op and recovery room time, which doesn't much involve the surgeon. It's also likely that some of those cases are shorter ones. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Paleo Diet with VSL (3/4 oral; 1/4 through 10ml syringe as an enema. Helping my Pouchitis
MM Mike March
Daffodilly Mike, I am so glad to hear you are feeling better. I remember hearing as I was preparing for J Pouch surgery in 2010 that having the J Pouch wouldn't cure the ulcerative colitis. That it would simply remove the largest organ affected by it. If that is true perhaps that explains the mysterious process of getting slammed with symptoms, then having them disappear. I know UC symptoms were like that for me. Even now I have cuff issues and mysterious eye issues of the macula swelling...could it be... [ more ]
Mike March Hi All, As mysteriously as the horrendous symptoms came on; for the past two days they have passed!! I am starting to regain energy and general well being. I only took low dose antibiotics for a few days (self-medicating as I may know more than most doctors at this point related to MY own condition!). What an enigma my Pouch is. Mike [ more ]
Scott F Mike, I think your surgeon is quoting what the research shows, more or less. Each of us differs in what we consider a big issue vs. a bump in the road, It's also harder for folks who had excellent GI health prior to the surgery to feel as satisfied with the changes. Certainly more than 10% will have some bumps in the road, e.g. occasional pouchitis, and if that goes untreated it will be much more than a bump. I hope your mysterious new meds help out. [ more ]
See all 48 replies...
J-Pouch ForumsGeneral Discussion
SIBO
S SJP3
Bodoni Anyone ever use Pepto Bismol to help reduce gas? [ more ]
CTBarrister Yes and another symptom is very foul smelling stools. If you need to spray air freshener in the bathroom more than 30 seconds, you may have a SIBO issue. [ more ]
SJP3 Like a lot of conditions, symptoms seem to vary from person to person. My SIBO symptoms were mostly horrible bloating and painful cramps. Mostly in the afternoon and night. Also had gas and constipation. [ more ]
See all 14 replies...
J-Pouch ForumsK-Pouch Korner
Surgery on right hand. How do I take care of k pouch
J joanC
skn69 I agree with Bill on the diet...no fiber, lumps, nuts, pineapple, pulpy oranges etc...keep it strained, puréed or liquidy...the last thing that you need is to have to unblock that darn tube with one hand. I remember years ago, they gave me a syringe with a bulb at the end of it (a big green thing)...it worked great one handed (when I had a miserable time with my i.v. in my right hand)...I kept a 1 litre reciepient and the syringe in the powder room (in France there isn't any sink in most... [ more ]
BillV I totally agree with Sharon’s suggestion on use of the catheter while your right hand recovers. When I was discharged from the hospital following BCIR surgery, I was set up with a foley catheter and leg bag for the long trip home. Although this worked, I discovered when emptying the bag in a public restroom that particles of fiber got caught in the bag’s drain and made emptying the bag more difficult. Unfortunately, leg bags are designed primarily for urine and not stool. If I had to do it... [ more ]
skn69 I am so sorry Joan, You are discribing one of my nightmares. Useless right hand...arghhhh! (Charlie Brown music Arghhhh!) My only suggestion is to hook yourself up to a strait drain...put the tube in and tape it down then plug the end. That way you only have to aim and unplug...for the couple of days in/at the hospital and first couple post op at home I would keep it hooked up to the leg bag...then you just have to empty the bag out directly into the bowl. Once you are on the move and... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
how to respond to messages
M maddie18
Jan Dollar Two ways: 1. If you have new messages (called Dialogs here) the Dialog box will be highlighted pink. It is in the upper right corner. There will be a number showing how many active dialogs there are. Just click on that box. 2. Go to your settings and change your notifications to receive emails when someone starts or replies to a dialog. When you get an email notification, there will be a link to the dialog In it. Jan [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Going back to stoma and bags. Too early?
HockadooHockadoo
TE Marie Thanks for asking Hockadoc. I'm finally getting 2 days in-between changing the wafer and my skin is doing a lot better. I still get stinging if I need to change the wafer, which means my skin is reacting to the acid like output! My skin was really nasty before I started going to the stoma NP. I had an abdomen full of adhesions. My surgeon spent hours lysing them. I can feel some knots coming back so am going for A.C.T. treatments. I was undergoing these treatments before this last surgery... [ more ]
Hockadoo TE Marie - It's been about 6 weeks since your surgery. Do you feel like you have, for the most part, recovered? Btw, your comments throughout this thread have been very helpful. [ more ]
TE Marie Lori, It just comes out when I'm urinating. Not every time or every day either. It is nothing that makes me wish I'd had it taken out. I think I mentioned above that I've only had one large discharge. Good luck! [ more ]
See all 76 replies...
J-Pouch ForumsHelp! Need advice now!
Pyoderma HELP PLEASE
S sally85
sally85 Thanks jan in a way it's good to know that the colectomy isn't a cure for pg at least I can hang on to hope that it can still be uc and not chrons, and thanx so much for the link! I've read some on the diversion colitis, really helped I've said it before and I'll say it again this life is a godsend! Xxxx Thanks again! Xxx [ more ]
Jan Dollar I don't think that colectomy is considerd a cure for PG. IBD is in your DNA. Plus, PG has unclear etiologies and disease course, according to the article I cited above. Diversion pouchitis is caused by having a diverting stoma. It is more common than you'd think. There are a number of active threads here discussing it. Jan [ more ]
sally85 Thanks so much for your replys I really appreciate it, my nurse just called me and said 'you shouldn't have pyoderma now because the entire diseased rectum had been removed' so I asked do they think it could be chrons and she said 'the histology on your large bowel showed uc so we're baffled' As far as I can tell I've never had blood in the ileostomy bag but I've always had bleeding from the rectum (the bleeding has been there from the 1st step when part of the diseased colon and rectum was... [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Diverted and pouchitis worse ?
AllyKatAllyKat
Jan Dollar So here's the thing. You can have ordinary pouchitis, or not. Pouchitis is a range of disorders with various causes. If it is more about IBD and less about an inflammatory response to normal bacteria (ordinary pouchitis), then it is more complex. You can also get diversion pouchitis, which is caused by the LACK of the fecal stream. Most people do not realize that the intestinal mucosa is nourished partly by nutrients in the fecal stream; short-chain fatty acids in particular. In that case,... [ more ]
AllyKat Thank you Jan, I have calls into my doctors if they ever call back. Yes, by toxic I mean I had bad reactions to the more potent ones. Some reactions to the antibiotics as well. my system does not do drugs very well. The pain from the inflammation is killing me. I hope I can find something that will work. I really want to be reconnected like ASAP. What I don't understand is how with no stool going thru the pouchitis has not healed itself? That was the purpose of doing this. thanks [ more ]
Jan Dollar Sounds to me that diversion obviously did not work for you. I can only presume that you tried UC meds before. It is not clear to me what uou mean by "toxic," unless you know you get severe side effects from them. If that is the case, I can't see what else is left besides pouch removal. I am sorry it did not work Out for you. Jan [ more ]
See all 3 replies...
J-Pouch ForumsPouchitis
I have to ask. General pouch question.
MysticobraMysticobra
Scott F I'd advise against taking more than two Lomotil at a time. The atropine gets pretty nasty at higher doses. Take anyone else's dietary advice as no more than an idea you can try on yourself, if you like. There really are *no* dietary rules that apply to us all (other than "stay hydrated"). Most of us don't need to have enemas daily, but a few folks swear by it, and I have no doubt it has helped some. [ more ]
M.E. Originally Posted by judyk: I am wondering myself, how long does it take to have the pouch do it's thing without causing pain and anxiety. I am just four months from takedown and have issues with frequency and accidents but most of all feeling like there are razor blades up inside me. Can't make plans because I never know how I will feel. On a very restricted diet. Just want to get my life back! I have had my J-Pouch for 17 years. I too struggled early on and it took several years for my... [ more ]
Maggie Mae I have been holding on to my pouch for 20 years. Prior to UC my husband and I were extremely active and adventerous. After my pouch my life completely changed. I just accepted my "new norm" and moved forward. Due to autoimmune disorder, I now have severe asthma and bronchectasis as well as crohn's. And continuous bile reflux. My illness wound up costing me my marriage. You are blessed to have a wife who understands. I have been thinking about about removing the pouch for several years now. I... [ more ]
See all 30 replies...
J-Pouch ForumsPouchitis
Any new antibiotic combos to try?
TinatTinat
JLH am assuming your problem is pouchitis?? used invanz for awhile. not terribly effective, but might work for you. i'd add water to the 1 g. bottle and drink it. is suppose to just work on the gi system. usually is an infusion so your doc might think this crazy. also, i use vsl capsules as suppositories i.e.. up the poop hole instead of swallowing them. sort of helped. also canasa suppositories. [ more ]
clz81 In addition to other the other replies (Augmentin, Bactrim, Doxy, etc.), I would definitely try Pepto Bismol tablets. For me, worked just as well as any other antibiotic. I was able to be on them for around an entire year before it stopped being effective. And interestingly enough, I tried it again just 2 days ago not expecting it to do anything, and it works again! May not last long, but I'll take it :-) [ more ]
liz11 bactrim oral vancomycin [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Womans problems!!
K Kirsty
Kirsty Thank you so much ladies!! Suppose it's summat I'm goin to after get used to! 😡😡😡 xxxx [ more ]
clz81 Every month, this month no exception, I feel like I'm getting the flu or I think maybe it's just a horrible pouchitis flare, but then I look at the calendar and within a day or two, my cycle starts. I get dizzy, nauseous, crazy diarrhea, and just feel horrible. The symptoms for me begin 1-2 days beforehand and then goes away pretty quickly after my cycle starts. My GYN says a type of birth control would help a lot since mine is still really heavy too, but I don't want to be on any more meds. [ more ]
skn69 Branchy There are things that you can do to make it a bit easier around that time. I always found that if I changed my diet, ate lighter foods (so that my pouch was not so full), drank a lot of hot fluids like tea or soup, used a heating pad on my tummy and on my lower back and did some yoga and stretches that it was a bit easier. My doctor back then prescribed a medication with codine in it for the pain but it also helped me to slow down my pouch on those days. Good luck...it sounds like... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Probiotics
BranchyBranchy
skn69 Branchy I do not have pouchitis (or did not think that I did) but I usually take about 1 month of probiotic every year (I buy them in a paraphramacy or a large grocery store with a pharmacy inside)...I find that my digestion slows down quite a bit and that I have a lot less gas afterwards. I do not take them all year or all of the time. If I am sick for some reason and need to take antibiotics for more than a week I will go back on the probiotics afterwards for at least a month. If you do... [ more ]
Scott F VSL works best at preventing pouchitis. The work that way it needs to be taken all the time. OTOH some people get pouchitis so rarely that "preventing" it is unnecessary. Since VSL is expensive, it might be reasonable to hold off (or take a modest, less expensive dose) until you find out that you are prone to pouchitis. [ more ]
See all 2 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Extreme pain due to menstrual cycle:(
J Jenhh
Mcalen ❤️
skn69 Goentropo, You are so right. My old Gyn told me that women were not built to have monthly periods for 35-40 yrs. We were meant to be pregnant every year or so from puberty to menopause meaning that most women only had about 3-6 periods ever year or 2... Case in point, my late mother-in-law raised 12 children (ouch!) but had over 18 pregnancies (6 late-term miscarriages and stilbirths) not counting all of the early miscarriages...meaing from around 16-50 she did not have a lot of periods. Doc... [ more ]
Goentropo Hi Jenhh I've had my pouch for over 30 years now and certainly never had the horrible time you are having. However, I had my surgery after the birth of my first child and several years later my periods were getting longer, more painful and heavier. I went to see my GYN and said something that sounds very archaic but makes sense when given some thought. Basically, my problem would no longer bother me once I had another child. He knew I was wanting to fall pregnant again, once I got my pouch... [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Well that's interesting...
SpookySpooky
Spooky Well, like I was saying, I should have known better. Given my history, it's lucky I didn't obstruct. Still, every once in a while, I like to try adding back foods that I've eliminated in the past. Needless to say, I don't think I'll be sampling corn again any time soon. Clearly some things should stay on the never list. [ more ]
mgmt10 I think we would all be surprised at what clings to the wall of our intestine before finally working its way out! I have seen lettuce leaves a week later. [ more ]
skn69 It seems that they hide out in a corner of the gut until they are ready to leave...I get it with pineapple, certain salads and things like leeks (why I would eat leeks with a k pouch is a mistery...) Some pills hang around for weeks and months aparently too, only to dissolve all together after a particularly acidic meal (sent me to ER on more than one occasion with an accidental overdose). At least you didn't get a blockage... Sharon [ more ]
See all 4 replies...

Join Us!

Founder, Creative Director & Web Master

William J. Johnson
bjohnson@j-pouch.org

Bill Johnson founded the J-Pouch Group in 1997.

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

Forum moderator and advisor
Jan Dollar R.N.

 

 

 

 

General Disclaimer

 

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


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

Confidentiality

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

 

CCFA

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


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

 

Join Now

Already a member? Sign In

Online Now

  • Len78
Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

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