Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsK-Pouch Korner
Partial obstruction?
B Bodoni
skn69 Bodoni, With age (and maybe the age of my pouch?) I have started having partial obstructions (first began in 2007 post op with ileus and then full blown obstructions)...maybe I have a kink up somewhere in the small intestine (always in the same spot) or a partial stricture but generally it clears itself up in a couple of days...linked to fiber my input?...I go on a hot liquid diet (tea, soup, broth...) for a day or two and do some gentle yoga exercise to try to 'stretch it out'... I tend to... [ more ]
See 1 reply...
J-Pouch ForumsK-Pouch Korner
More leakage.
EricEric
Edee Hi dpol, Whats a a clamp and then a plug at the end of the catheter? I've got a base plate and having to leave catheter in but it's making my stoma sore as it's not got enough room to cut the right size hole around. Thanks, Rachel [ more ]
dpol Eric, if you decide to leave the tube in, I used a clamp and then a plug at the end of the catheter that I taped in for confidence, so I did not have to attach a bag. I did this for 3 months while I waited to have a procedure. It made having a tube in all the time a little easier to live with. [ more ]
Jasmine 2 Eric, I would put the catheter in and keep it in for 21 days to scar it into place if that's even possible with your problem. It's worth a try... [ more ]
See all 8 replies...
J-Pouch ForumsK-Pouch Korner
K-pouch - partial obstructions?
B Bodoni
skn69 Bodoni, I hope that this is not an obstruction, partial or otherwise...they suck. Just to test the theory, I might try going on a hot fluids diet for 24hrs...hot tea, broth, soup etc...use a heating pad on you abdomen and lower back and try a touch of yoga stretching and see if any of that gives you some relief...not sure if you are sedentary at work or not but I would up my walking too for a bit...maybe a small walk around the office or block every hour...and chart your intake/output... [ more ]
vanessavy I can feel mine in my left ribcage. Never puked and can eat with them. Clears up after a few days for me. I never had spasms though. [ more ]
See all 2 replies...
J-Pouch ForumsK-Pouch Korner
Slight spasms ?
B Bodoni
skn69 I occasionally get a 'twinge' in the valve but whenever I had a real cramp in it was due to the pouch being overful or my having over intubated perviously (when you pull the tube out regularly due to blockages and chunks)...no real problem ever came from it or was indicated by it. Sharon [ more ]
vanessavy Yes. Sometime my valve feels like a razor blade. Nerves or if my pouch is full. [ more ]
See all 2 replies...
J-Pouch ForumsK-Pouch Korner
Distended lower abdomen
SA Sydney AZ
skn69 Localised and a grapefruit sounds suspiciously like a hernia but it could also be a nasty abscess or cyst or some other hot and nasty problem...if your pouch i functioning well then that is half the battle and anything else should be fixable...keep us posted on the results of the scan... Sharon [ more ]
Bodoni Let's hope the scan shows something. I suppose it could be a hernia. I am a long time K-poucher. I had a hernia years ago. Had it repaired and no problems since. Good luck and keep us posted. [ more ]
See all 2 replies...
J-Pouch ForumsK-Pouch Korner
Sex and K-Pouch
SA Sydney AZ
Sydney AZ Thanks so much ladies! I thought about going to the gyno and getting an estrogen patch as well. Funny story I want to share and see if you experience this too.... I notice that when he is able to "go deeper" I hear a squishing/swoshing sound! Like liquid being swoshed around - it's only when he goes deep and I try and moan louder so he doesn't hear it! LOL Is that normal? I always empty before sex and on days I know I'm having sex - I hardly eat!! What is that??? [ more ]
JaniceM Yes, I have same. The nerve endings are very alive for me. Plus, the Kpouch sits next to the bladder which sits right there next to vagina..try to empty both bladder and pouch before sex (I know, planning sucks right?). Unfortunately hard penetration will send me to the roof so changing positions may help so you can control this. After menopause it is far worse from lack of lubrication and vaginal atrophy. If that is the case, then lube and/or estradiol tabs or cream can help although all it... [ more ]
liz11 sydney, see if you can get into see a urogyn at CC. I see Dr. Ridgeway and she is FABULOUS (Dr. Remzi is my colorectal surgeon), but booked out very far and is also gone in a few months for a few months. pelvic floor therapy may help too. [ more ]
See all 8 replies...
J-Pouch ForumsK-Pouch Korner
Problems catheterizing k pouch
E Edee
Edee Hi Sharon, Thanks for your reply. It's definitely worse trying when you;ve got a full pouch! I perch on the edge of the bath and it goes in a lot easier. I also place a spigot in the end of the cath, as I'm paranoid over having an accident and making a mess before I get the cath end to the toilet, so that helps me chill out more during intubation. Sometimes it will get a little stuck halfway and I get some more lube on and it slides in easier or I syringe some water upwards and the cath... [ more ]
skn69 Hi, It all depends on why it is blocking and how it is blocking...does the tube bend at then end when you push? Does it feel like a gut-punch when you try to get it in or more like a pain in your stoma? How is the leakage? Air or Gas? If you lean forward or backwards or twist sideways does it help? You might try aiming your tube either upwards, downwards or to either side to see if your valve has changed angle or trajectory???? You might find a new direction that you need to aim for...Mine... [ more ]
Edee Thanks Vanessa, I'll ask my surgeon when I see him next week. I've joined a k-pouch group o Facebook. Might see you there :-) [ more ]
See all 4 replies...
J-Pouch ForumsK-Pouch Korner
Publishing a Book
vanessavyvanessavy
vanessavy Over the past 2 years people asked me to write a book and I was so tired of writing about myself I had no interest. BUT I love FOOD (who doesn't?!) So I am going to mix it up with story/life and food. Will be gluten/grain free with a main focus on primal eating. thanks [ more ]
Jan Dollar Great idea Vanessa! Thanks for the effort. I'm sure many will find it useful. Jan [ more ]
See all 2 replies...
J-Pouch ForumsK-Pouch Korner
Tight stoma
B Bodoni
Edee Can somebody help me please?? [ more ]
Edee Hi, I've a new k-pouch. surgery 3rd July 2013. Went to Oxford and Proff Mortensen did the op for me. Everything was going well up until a couple of days ago. I'm struggling to get my medena cath in. I've got my pouch on permanent drain with cath fixed in via Hollister base plate and drain bag. Is there anything I can do to help. Should I be worried 5 weeks post op that something serious could be wrong? Hope someone can help please. Thanks, Rachel [ more ]
skn69 Bodoni, Sometimes the stoma is tighter due to dehydration...I hadn't realised it in the begining...I couldn't understand why sometimes there was no problem ( with lube) and other times it was nearly impossible...then I asked myself what was different and it was the amount of liquids I had drunk during the day/night...Olive oil helps too...it is even better than lube for a tight stoma...less stress on the valve too...plus, obviously, what Vanessa said...if if is too tight then you need to... [ more ]
See all 4 replies...
J-Pouch ForumsK-Pouch Korner
Valve repair--constant drainage?
D dylanfan
vanessavy I'd leave it in. My friend just had surgery and formed a fistula due to things not healing right. Let those staples and things settle to prevent anything horrible happening. I wore a leg bag for 2 weeks or so to straighten out a kinked valve and it sucked so I feel your pain but when it is done healing you won't have to deal with it anymore. If it gets damaged it might set you back to having more surgery. [ more ]
dylanfan Thanks guys! What you both said makes sense. I guess I'll just have to be patient [ more ]
skn69 Dylan, When your surgeon operates on your valve he needs to tack things down with either sutures or staples which stay in place until the valve heals or they are reabsorbed or fall out depending on his preferences, technique and your body's healing process. When you keep the tube in place for a month it serves to allow your vavle to scar into positon or place and prevent those precious staples or sutures from moving while doing so...if you are pulling out and pushing in your tube regularly... [ more ]
See all 4 replies...
J-Pouch ForumsK-Pouch Korner
Any k or J pouchers in Austrailia need surgery?
skn69skn69
skn69 That is so dangerous Ad, You need to be able to move forward with your life no matter what happens, no matter what medical solution you get..as long as you are no longer in pain, suffering or incontinent...life is way too short to waste on the stuff that we cannot have, you need to grab what you can get (which would not prevent you from getting a k pouch further down the line if and when possible) and heal, live and enjoy a bit of life...then worry about other stuff...for now this... [ more ]
Adroen Thanks for the offer Sharon. I feel like that will just backfire on me and give the guy who's caused all this more ammunition. Even though our hearts would be in the right place, I think it would be seen as undermining my surgeon. I can't get out of my head how close I was to a better life(maybe of course). Just keeps running through my head. Ad [ more ]
skn69 Ad, If you can get hold of your medical file, please send me a copy and I will forward it off to my k pouch surgeon for a consult...then if need be and if he agrees, he can send back an opinion on your K pouch worthiness and maybe change your surgeon's mind... Sharon [ more ]
See all 28 replies...
J-Pouch ForumsK-Pouch Korner
Need advice on ileostomy decision
vanessavyvanessavy
vanessavy There is nothing to fix in my BCIR (I don't have a Kpouch). I have nothing wrong basically so there is nothing to do to it. If I wanted am ileostomy then that is the only option to go to. I came to the conclusion I had this surgery because I can't live with a bag so I will make it work. For now it is what it is. Had some more nerve blocks done at CC and helped a lot with some pain so keeping at this and trucking along. Go for runs now and stuff so life is 'ok'. Also I wouldn't go anywhere... [ more ]
vanessavy Decided to ride this sucker out. I know I can't live with a bag. Reason I got this surgery in the 1st place. I have to think maybe a few years down the road this might do a 180. More I read ostomy boards and Fb threads the more their issues sound all like mine, just external and slightly different. Foul smell from smelly mucus on my stoma = smelly bags, nervous pooping when the stench is bad in my gut = people get embarrassed emptying bags at work due to smell, loud noises from stoma = loud... [ more ]
skn69 Lard? Could you maybe use duck fat instead? Much healthier and no colestorol! Sharon [ more ]
See all 27 replies...
J-Pouch ForumsK-Pouch Korner
Enzymes for the Immune System
J Jasmine 2
Nikino ❤️
skn69 Woodstock, I do not ever take coated of LP (prolonged release) pills...they leave my body long before they are digested but when my pouch is being pouchy, it chuck things up and out long before they can be absorbed..even the simple stuff... Some tricks are cutting or crushing pills but you need to ask your pharmacist first if you can. Sharon [ more ]
woodstock69 We were always told not to take enteric coated pills such as this sera enzyme suggested [ more ]
See all 10 replies...
J-Pouch ForumsK-Pouch Korner
phantom pains
Rosie128Rosie128
vanessavy I hate that crap. I regret removing my rectum and anus all the time. I actually one day hope with stem cells I can recreate some parts. I really have no desire to keep this pouch and don't want a bag so will be awesome to have it all reconstructed down there. I have night terrors I swear where I am trying to fart. I can feel my body trying to pass gas at night. I hate this barbie butt big time, especially with gas. I get the 'oh crap, I have to run to the bathroom and poop now' feeling a lot... [ more ]
skn69 Rosie, I get them more after certain activities like bike riding, running or other exercises that put some sort of pressure on the zone...sex or my period (when I still had one) made it much worse but it wears off a bit as time goes by...or maybe I just got used to it...It feels more like a heaviness down there or a knife pain... I still dream of having normal bowel movements and then wake up with some cramping or pain down there... mostly after 33+yrs I ignore it but if it gets bad enough... [ more ]
bcirray I've been an ostomate for 41 years (30 ileo, 11 BCIR), still get phantom "pains", same illusion that amputees have. Nothing I know of can be done. Ray [ more ]
See all 4 replies...
J-Pouch ForumsK-Pouch Korner
antibiotics
JA John A
John A Yes, the Shen diet is something I too am trying. But the lack of veggies made me iron deficient. Nevertheless, it does definitely help. The antibiotics make the biggest difference though. Changes from the KP running my life, to me running it. Much less frequent emptying and no urgency. Took amoxicilin for a couple of weeks until it stopped working and then cipro for 6 weeks, but now that's also ineffective. Will start augmentin as soon as Shen calls it in. Trying to find a cycle that I could... [ more ]
vanessavy Xifacin does nothing for me. Shen at CC put me on Tindamax. Diet is key though and can take a full year to get the guts in check on it. High fat, low fiber diet. I cook paleo usually so I already follow that. I the times lately with cupcakes around. :/ [ more ]
John A Thank you, Liz...Xifaxan doesn't work at all for me. WHat is this FODMAP diet? I will look online. Dr. Shen is working with me on this too. Again, much thanks. [ more ]
See all 4 replies...
J-Pouch ForumsK-Pouch Korner
Hernia w/ a K pouch?
SA Sydney AZ
Patricia Walker Hello again Thank you for replying. Yes I think I did not make the message really clear. The only time the stoma came through completely was after the birth. I understood this was due to the muscles being weak in this area. It is just that dealing with this made me realize that if all went horribly wrong with the valve I could ease it back. But remember the GP did show me this. Now I had been told in the last few years that the hernia could be repaired. The problem came was when they could... [ more ]
skn69 Patricia, I am trying to figure this out...if I understand correctly: 1. you have a peri-stomal hernia (a hernia close to the neck of the valve or stoma) 2. your valve pops out completely (which normally should lead to total incontinence) 3. when it pops out you can just push it back into place 4. your tube hooks onto your valve and 'pulls' your stoma out Is that about right? If I got it strait then there is a very easy fix to this...a peri-stomal hernia can be repaired through a... [ more ]
Patricia Walker Do not know what view people have on this.I believe the end of the catheter can cause a problem. If the valve has been partially pulled through by catching on the holes in the tip of the catheter. This means on next incubating it means the valve has slipped through just slightly but enough to cause a black for the catheter. After the birth of my son with this area week it was a real problem. Freaky as the whole stoma came to the surface. A GP came out to me and taught me how to simply push... [ more ]
See all 7 replies...
J-Pouch ForumsK-Pouch Korner
Dr. Remzi
vanessavyvanessavy
vanessavy Why are you worried about this post? [ more ]
Dot2 I am worried about this info. Daughter had J-pouch at Hopkins 19 yrs ago - recently been diagnosed with j-pouch cancer at DC hospital - they also recommended 2nd opinion because they were not sure what to call it with no colon. She has apptmnt with CC which is 8 hours away - Since she is in so much pain she will no doubt go to where she originally had the surgery. If she had not had pain a few weeks ago, and in hospital a week for infection, she would have never known she had cancer. She was... [ more ]
PJ75 Josh I wasn't sure if you are aware of this but Dr. Remzi does not work with K Pouches at all anymore. Dr. Deitz is now the Vice Chairman of Colorectal Surgery and Dr. Remzi is the Dept. Chairman. Dr. Deitz is the top surgeon at CC for K Pouches now. They both are excellent surgeons as you said. They just specialize in different procedures. The CC's main website needs to update what doctors perform or revise K Pouches/Continent Ileostomies. Dr. Remzi and Dr. Church do not but are listed on... [ more ]
See all 16 replies...
J-Pouch ForumsK-Pouch Korner
Best Probiotic?
D dpol
skn69 Bodoni, When I take my activia I do it in the mornings on an empty stomach...they say that it works better that way...,not sure if it is true or not. Sharon [ more ]
Bodoni I take 1 Culturelle capsule in the morning and 1- small bottle of DanActive in the evening. DanActive is in the dairy/yogurt section and Culturelle is in the vitamin isle. [ more ]
skn69 The name itself is kind of anti-intuitive for us colonless souls! But if it works and works for your budget then go for it...I use a house-brand from a big box store and it does just fine for me and my pouch's needs...when I feel the need for more potent stuff I use a National health food chain store brand...about 20yrs ago I had a great GP who custom ordered them from a lab that special delivered them in an ice chest...kept them in the fridge up to 30 days...They were fantastic but very... [ more ]
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
Very cool for us continent ileos
vanessavyvanessavy
skn69 Don't give up the fight yet, if you can hang on until someone gives you some sort solution as to the whys and what can be done about it...it does not sound 'mechanical' but more 'functional'...there should be some sort of solution possible to give you relief and a painfree life. Sharon [ more ]
vanessavy It looks cool. I have done this with freezing fruit and using a vitamix but my vitamix is gone and this looks like fun Not sure how much longer I am keeping my pouch though. [ more ]
skn69 Wow! Want one yesterday! I could finally give up the dairy that way... Sharon [ more ]
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
Help - Leak?
A AlexanderC
skn69 Dixie, If we are talking about the same thing then it isn't a tracea tube...it is a wire (about 2-4mm thick)and is semi-stiff but flexible...it is plastic covered (by some very slippery material)and you snake it along the canal to the valve until you pass it through... I don't know if you remember but when my pouch/valve were at their worse between 2007-2009 I had a really bad problem and could no longer intubate on my own...I ended up in ER a couple of times in both Toronto and Paris and... [ more ]
AlexanderC I don't know the exact size of mine, it's more than 30cm long though. The end is curved but that's not an issue. You just straighten it out and slot the catheter over. I will look up the length and details of mine when I get home and post it later or tomorrow. [ more ]
Dixie from Saskatchewan Hi Alexander, I just took a look at the trachea tube link & might order one to have on hand for an emergency. What size do you use - small, medium or large? I notice one end is curved. I assume you put the straight end in, but as the other end is curved, how does our regular tube go over the curved end? (Sorry - stupid question!). - Dixie [ more ]
See all 13 replies...
J-Pouch ForumsK-Pouch Korner
Very strange
skn69skn69
skn69 Do not get me started on chocolate.....or ice cream...I can live, most of the time, without gluten because I have never really been into bread/Cake/pasta etc...but sugar? Never! They would have to tell me that it is poison for me to consider removing it and even then....you are very couragous if you can remove it all...not in my lifetime. Hubby says that I am now in love with the Swiss ball and that I may start to sleep on it...he may be right. Sharon [ more ]
vanessavy Cool! My pouch has been good until I ate cookies this week. Been gluten/sugar free and made a world of difference. Need to clean my diet up again. Such a pain when chocolate is in this world. I am getting nerve blocks done, helps a lot. Blocks all the pain. I live on a 6-8 on a daily basis and 5 if I am on pain meds. [ more ]
skn69 So Sweet Dpol, For now I will try anything that gives me and my pouch a bit of relief...this seems to be helping both the sacroilitis and the pouch position...draping myself, back to the Swiss ball, seems to give me a measure or pain relief so even though it is not perfect it helps... An alternative pain 'specialist' who does some sort of mental gobledigook to relive pain through hynosis couldn't get into my brain (lucky man!)...but we did establish that my level of pain runs at around 8 on... [ more ]
See all 4 replies...
J-Pouch ForumsK-Pouch Korner
Pain
amosamos
vanessavy I am on Norco for now until I go back for more nerve blocks at CC with Cheng. I was also given Topamax but not sure I will try it. I can't take Ibuprofen due to gastritis and ulcers. [ more ]
skn69 I suffer from sacroilitis so my pain level is high and I take 400mg advil 2xs a day or IBprophene or naporoxin (all anti inflamatories and not pain killers)...for headache pain I take tylenol or the equivalent...I tried taking tylenol 3 with codine but it slowed my parastoltic rytheme to a stop...scared me to death...So I avoid it now. Sharon [ more ]
Bodoni I have a K-pouch and my GI doc says no aspirin. May cause the pouch to bleed. I stay with Tylenol and sometimes Tramadol which is a prescription non-narcotic pain killer. Works a little better than Tylenol. [ more ]
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
Pouchitis and Antibiotics, need help
F Fulton762
skn69 Fulton, You can take prune juice at any time of the day or night...in the very begining I took it 3xs a day with meals and things just booted it out of my pouch at warp speed...if you combine it with coffee it becomes k pouch draino!...our pouches a conceived to not hold fecal matter for too long otherwise we end up with all sorts of problems...so try the prune juice at the most convienent time of day for you...it takes about 3-6hrs to run through you depending on what is inside of you and... [ more ]
Fulton762 Yes, they scoped me in the hospital and it was pouchitis. I do not have crohns and I was glad to hear that. I'm just going through a bad time right now, I was taking benzo's for over 15 years and the side effects were getting bad. I stopped CT and the withdrawal is pretty bad. My CNS is overly sensitive to everything and the stress of the pouchitis was too much to bear. I've read online that Cipro can increase and prolong benzo WD as it effects your CNS also and from what I went through,... [ more ]
vanessavy Xifacin is a safe long term antibiotic that might be an option. Are you sure it is pouchitis? Been diagnosed by scope? [ more ]
See all 6 replies...
J-Pouch ForumsK-Pouch Korner
daughter in hospital-extreme pain around navel
Art MomArt Mom
skn69 Art Mom, Ulcers in the pouch are not (as far as I know) a sign of pouchitis, they are usually a sign of something else...blood from the rectum that is no longer there is not common either...but put them together and for me they spell a sensitivity to aspirin or other pain meds...has she been on anything lately? For period pain or back pain? Aspirin and other OTC drugs can cause bleeding (they are used as anticoagulants after all) and they can also cause ulcers...its a thought... Keep us up... [ more ]
liz11 maybe you want to move her to cleveland as an in patient right now. might be best to be where all the experts are, including infectious disease docs, etc. you could get a direct admit through Dr. Dietz's office I am sure. so you wouldn't have to wait through the emergency room just an idea. [ more ]
vanessavy FYI Shen is in China until the 14th so email is best. [ more ]
See all 8 replies...
J-Pouch ForumsK-Pouch Korner
Drinking Soda
SA Sydney AZ
Bodoni I don't drink sodas. Too much carbonation. I stick to iced tea and coffee. [ more ]
grandma64 I drink Diet Sierra Mist, I will pour it into a glass of ice and let it water down a little before I drink it, so that helps me out a lot! [ more ]
vanessavy I drink Ginger Ale a lot. It seems to be the best for me. I had most of my stomach removed years ago and back then I couldn't tolerate can soda but fountain had less carbonation so I had less gas. Seems to be the case currently for me still. [ more ]
See all 7 replies...
J-Pouch ForumsK-Pouch Korner
Mystery pouch
EricEric
vanessavy I used a clamp until it didn't work right and just added weight. I use these and they rock! It is a plug for the catheter. https://www.edgepark.com/shopcatalog/item/570414l [ more ]
Patricia Walker Yes I agree. On the outside of my valve it is covered in ulcers due to problems inserting catheter. I was not aware of this until a more recent examination of reservoir. Reservoir 100% perfect after just under 40 years. Best wishes for 2013 to everyone. [ more ]
Eric Sounds like a good idea, think ill try that, I don't mind leaving the cath in, I just hate the bag, think I'll clamp it, thanks guys!!! [ more ]
See all 9 replies...
J-Pouch ForumsK-Pouch Korner
Considering converting J-pouch to K-Pouch
JenJenJenJen
vanessavy I drive 5.5 hours and totally worth it. Cleveland is also fun I am going to see Remzi and explore options to do surgery. [ more ]
kaydbird Jen, I had my j-pouch done in FL where I grew up when I was just a kid. But all my more recent stuff was done at Cleveland Clinic. GI is Dr Bo Shen and surgeon Dr Feza Remzi. They are both fantastic docs. Only a few do k-pouch at CC Remzi and Deitz I think, maybe one more but I am not sure. Remzi is now the department head, it may be more difficult to get an appointment with him. At least CC is not quite the trek for you that it is for others if you decide to get a consult. -- katie [ more ]
Jan Dollar Jen, yes, I definitely would postpone this hernia repair until after you have consulted with your pouch surgeon. What may seem like a simple hernia repair could actually ruin your option for a k-pouch, especially if it is large and requires mesh. I think you are right that the surgeon who is doing the hernia repair is just focusing on that, not the big picture. Jan [ more ]
See all 9 replies...
J-Pouch ForumsK-Pouch Korner
Perineal Mass of some sort
KeithOKeithO
KeithO Turns out its a hernia [ more ]
vanessavy I had a mass near my rectal stump that was removed. Was small then got big, larger than a golf ball fast. You'll need a CT to determine whatnit is. The ER can't turn you away with no insurance. Since I have ni rectum general surgeon cleaned my abcess out bedside and went home. Wish I did it sooner this was not fun! [ more ]
See all 2 replies...
J-Pouch ForumsK-Pouch Korner
Battle of the leaky valve continues!
EricEric
vanessavy I was using these. I get them on Amazon for a decent price and one usually lasts me a day. But someone said they were being more "green" and went with reusable nursing pads. I tried a few brands and found one that is decent so hopefully these will work. I am so tired of my trash basket piling up. [ more ]
skn69 Just a little P.S. to everyone else's good info...if you cannot afford the nursing pads (I think that they are expensive) then use those feminine panty liners (the biggest format that you can find) cut in half and then the Y slit down to the middle of it...then place the half around your tube...they are also very absorbant and somewhat cheap... I couldn't get the breast pads at a reasonable cost here so I used those. Sharon [ more ]
lesrich1 Eric, try this; buy some good quality nursing pads.I use Lansinoh regularly and have used Medela. I don't know what products you have. Cut a slit from the outer edge to the center and the make a small cross cut for the place for catheter to sit. I recommend the nursing pads because they are more effective than gauze in keeping leakage from getting on your clothes. If you aren't using it, you will probably have to use paper tape to keep it on. [ more ]
See all 6 replies...
J-Pouch ForumsK-Pouch Korner
Still leaking
EricEric
vanessavy Thanks Josh! For the reply and PM. I did have an abcess, I have 2 actually that were so tiny CC wasn't concerned with but this one just got huge real fast. Was a total pain since it wasn't real liquid, just real thick stuff with a lot of blood. The surgeon just had to dig it all out with a Qtip. And now I have to be super clean there and pack it so I don't get an infection since I have cdiff taking another antibiotic can be a big problem. If I have signs of infection then they said no... [ more ]
skn69 Vanessa, I've been thinking about you all night (not like that!!!) and wondering about your diet...I know that you are very athletic and eat healthy...how much fruit/veggies do you eat? How is your fiber load? Do you eat/drink milk products? Whole grain breads? I am wondering how much of what you feel or are suffering can/could be controlled through diet...No, I am not kidding....(diet does not fix a broken valve or clear up C-diff but it may help with the gas etc)...it is spring here and I... [ more ]
skn69 I just tried to google the schema of the surgery to see how they do it...very interesting procedure...I am still not sure of the details because there is only one picture of it and it looks like the small bowel in 'woven' into the pouch and comes out to wrap itself around the valve...wow! I am blown away at the concept...I had never seen the pics before...mine is totally different...it just looks like my valve is wearing a turtle neck sweater...so technically, your living collar actually has... [ more ]
See all 17 replies...
J-Pouch ForumsK-Pouch Korner
K-Pouch Dr.'s in Europe?
SA Sydney AZ
Sydney AZ Thanks so much everyone! [ more ]
lesrich1 I hope this puts you at ease. I know you are new at this and I am an oldie. I have traveled to Russia, Austria, Italy, London, Nova Scotia and leaving for Barcelona in 2 weeks. I travel with extra supplies in different cases. I have never had an emergency. Some people travel with an antibiotic,I never have. You still are getting comfortable with your pouch.You will enjoy what life has to offer outside the states. [ more ]
skn69 I have been fortunate to have met some excellent doctors and surgeon and have rarely had major difficulties while away (more likely at home)...if you are traveling and need a contact then please don't heistate to contact me while in Europe if a problem comes up...I usually check out the site daily...if not PM me and I will give you my email for emergencies. Sharon [ more ]
See all 5 replies...
J-Pouch ForumsK-Pouch Korner
Trapped gas?
B Bodoni
skn69 As my dearly departed sister-in-law once remarked...everything causes gas! The trick is to combine your foods so that they create the least amount of gas possible...I had a lot of success with a dissociated diet where I never ate carbs with protiens and kept my fruits to seperate meals...I ate fruit and drank fruit juices in the morning and for 4pm snack, ate either meat/fish/chicken etc with veggies for either lunch or dinner and had carbs (rice, bread, pasta, potatoes) with veggies for the... [ more ]
Sydney AZ I get HORRIBLE gas pains and buy Beano and Gas X by the case! I was told that sugar causes excess gas - and to eat a high protein diet... [ more ]
JaniceM I chew gum. works like a charm for me. [ more ]
See all 4 replies...
J-Pouch ForumsK-Pouch Korner
Getting scared, need info please.
EricEric
AlexanderC Hi Eric, I recognise what you are talking about. When I had my panproctocolectomy I was fine the first day after surgery, albeit completely out of it, but I remember none of that. All I remember is waking up on the second night and not knowing where I was or why. I was convinced it was a nightmare about some game show set up and pulled out my nasogastric tube. I was about to pull out the others when the nurses intervened. They called my wife from my mobile and she had to tell me why I was... [ more ]
skn69 Hi Sweetie, Calm down, take a deep breath and think...Who prescribes those anxiety meds for you??? He is the go to guy to talk to about drug interactions/associations and find out if you cannot switch to another med or even wean off of it until after surgery...not sure that an antianxiiety med will do you that much good if its interaction with the anesthetic is that terrifying and potentially dangerous for you post op...Have him make an apt to see/talk to your anesthesiologist and get this... [ more ]
See all 2 replies...
J-Pouch ForumsK-Pouch Korner
Leaky Valve ?
A Aggie
VirginiaMoose Aggie, Thanks for getting back to me. Hope you have a full recovery soon. [ more ]
Aggie I had my pouch revision on Feb. 19, by Dr. Bauer at Mt. Sini in NYC. He redid my valve because it was slipped and enlarged my pouch. Also had my both ovaries & tubes removed at the same time. Still recuperating. Not a simple procedure. [ more ]
VirginiaMoose Aggie, What a great way to phrase it! I've had my kock pouch since 1983. I had a little leaking pretty early on but learned to live with it because in the early years it just wasn't to bad. It has been getting worse and worse over the last couple of years. At home I use a bounty paper towel folded and a small piece of thin plastic about 4 x 4" and like you, I know when I leak and can rush to the bathroom but I don't leave home without a stoma cap on. Leakage can be so bad sometimes that even... [ more ]
See all 10 replies...
J-Pouch ForumsK-Pouch Korner
Dr. Schiller
DH Donna H
VirginiaMoose I just had a phone appointment with Dr. Schiller today and was very impressed by him. I've had my kock pouch since 1983 but have been having leakage problems that have been getting worse over the last several years. My local surgeon recommend Dr. Schiller for a valve revision. I'd also like to hear from others who have had Dr. Schiller. [ more ]
amos Dr. Schiller is the best Dr. Surgeon I have ever met. He did my pouch. Every time I have had a question or concern he calls me back, and I don't mean calls back in a day or two, I mean within mins, to maybe a few hours depending on how you answer his phone message. I can't say enough about him. I have had a lot of surgeries with other dr. But Dr. Schiller really does care for is patients. [ more ]
dpol Dr. Robert Beart is very knowledgeable about Kpouches and he helped me resolve my problem. He was trained at Mayo Clinic. His practice is in Glendale California. [ more ]
See all 7 replies...
J-Pouch ForumsK-Pouch Korner
Considering KPouch surgery ?
Richard FHRichard FH
Richard FH The way it was explained to me was, That any minor problems such as fisulas,intesternal blockages etc ( which you would be unlucky if you suffer from any of these )should and could be treated by your local hospitals, More serious conditions where specialist treatment was needed your local health authority has a duty of care to transport and pay for any treatment needed, Basically they would ship you off to oxford for treatment.I have had conversation with a health care professional, where I... [ more ]
roxycan Thanks Richard, I will mention the cost savings to the Dr too. Yes I heard £150, im happy to pay if if its going to start things off. I dont want to live with a stoma when there is another option I would rather be seen at Oxford (just heard more infomation about it and good things about the surgeon) One question though, say I get the K pouch and something goes wrong, I live 5 hours away from Oxford, what do you do? [ more ]
Richard FH Hi Roxycan.I presume that you have a stoma ??? and in my opinion all of the products necessary to maintain this from bags to paste to adhesive remover (£17 a tin !!!!) etc etc is a vast amount for the NHS to fund. I have read that there was a study covering a 3 year period which concluded that you would reach a "break even point" on costings funding the k pouch op.Aswell as the obvious benefits of this procedure giving you a lifechange. I simply cannot believe such an arrogant GP !!!!!!! I... [ more ]
See all 7 replies...
J-Pouch ForumsK-Pouch Korner
Fistula??
grandma64grandma64
grandma64 Oh Bless your Heart!! I don't think I could ever move away that far, my whole family are so close! I'm very sorry you have had to deal with your health issues for so long, I pray that you can have some relief! Thanks for your reply! grandma64 [ more ]
skn69 I was born in the U.S, left at 7 and moved up north to become a Toronto girl...then here (Paris) at 23...I go back 'home' regularly and even bought a place w/my best friend Stateside...I intend to retire back home in about 10yrs if possible...For now I re-established my residency which was a biggie for me...but for now, life is here, the hubby +family...it is just very hard...I miss home. And for me, health care is a major factor in where and how I live...It is really hard to admit but when... [ more ]
grandma64 Oh yah, the flu has been awful in the states too, several people have even died from it, so sad! So far so good in my family. Glad to hear you're back working, that's awesome. So have you ever been to the U.S.? You take care and hugs, grandma64 [ more ]
See all 6 replies...
J-Pouch ForumsK-Pouch Korner
Need Saline for Irrigation for a revised K Pouch
A Aggie
Aggie Thanks, Big help on my stressing. Finally got through for the prescription call-in and for now, following orders to the letter. Glad to know it's not the end of the world if I don't have saline. [ more ]
skn69 Tap water is just fine but if you are really worried then boil yourself a pot of water and add a tablespoon of salt to it...or just boil a pot of water...and let it cool. Shaorn [ more ]
John A Are you certain you need to irrigate with saline? After my revisions I never did, just used room temp tap water... [ more ]
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
Sore skin!
grandma64grandma64
skn69 Grandma, Just 1 more thought...do you take any suppliments? If so, iron and Vit B complex can both burn your skin through acidy output...if so, they have less of a negative effect on your skin if taken with a meal and not on an empty stomach. Sharon [ more ]
grandma64 Never thought to try these, I'll have to give them a try! Thanks for the reply. grandma64 [ more ]
Bodoni Once you get the skin healed up around your stoma, you might try skin wipes. I forget what they are called, but you just tear open the little packet and apply to the skin around your stoma. It dries quickly and provides a protective coating.Oh, try this site- http://www.totalhomecaresuppli...ducts/sssns80725.jpg [ more ]
See all 17 replies...
J-Pouch ForumsK-Pouch Korner
Hernia
FM Former Member
dpol By capping it I meant cap the end of the tube until you need to empty your pouch. I did this instead of wear a bag. I liked it better, but others may like the bag better. [ more ]
dpol Did your doctor talk about leaving the tube in and capping it for a while? When I was having a lot of issues inserting my catheter I did this until I could see my doctor. I would call your doctor and ask if he recommends this. It is a little bit of a hassle, but it greatly reduces the stress until you can see someone who knows about your surgery. Just be very careful about what you eat and chew the heck out of everthing. Best of luck, it is scarey when you are not sure if you can intubate. [ more ]
Sydney AZ Hello, I had a k pouch done this past June 2011. As of a few days ago I have been having difficulty intubating. I have tried 3 different catheters, different positions, etc. Last time I intubated - it went right in. Now, again, it is not going in. Sat night, I tried for on/off for 10 hours! I was about to go to the ER when (Finally) it went in. Since then, it takes on average 20 mins now! I thought I was in the clear today (been using a heating pad) but the problem is happening again. I... [ more ]
See all 7 replies...
J-Pouch ForumsK-Pouch Korner
Any Irish interested in K pouch surgery?
skn69skn69
skn69 ok Darren, On my end the surgeon will contact the surgeons that he knows over there to see if one of them can 'invite him over'...once you are sure, of course...there is no obligation but I am just putting out feelers for now...if there is more than 1 patient than obviously it is better for everyone concerned...from both a teaching and a learning point of view... So let me know if and when you can... Sharon [ more ]
Darren H Thanks Sharon, im going to ask anyone i know around here and also theres a group on facebook for irish people with crohns and colitis, many of them have ileostomies. Il ask there, il let you know. Thanks [ more ]
See all 2 replies...
J-Pouch ForumsK-Pouch Korner
Help K pouch in UK
R roxycan
skn69 Hi Roxy, I would get in touch with the other members of this site from England...2 of them are having their K pouches done this month or thereabouts...find out how they got in touch with Prof and see how they feel about him and his team/surgery/hospial stay and results. Sharon [ more ]
See 1 reply...
J-Pouch ForumsK-Pouch Korner
Stoma output?
EricEric
Jasmine 2 You should leave the catheter in, and not take it out unless the holes get plugged and you can't unplug the catheter with irrigating. You shouldn't take it out to clean it, just leave it in at all times. The irrigating is the only cleaning it needs for now while you wear it constantly for at least 21 days straight. As far as the mucous, that can depend on what you eat and intubating irritation...some foods cause more mucous or you may have a food sensitivity. Milk causes more mucous for me... [ more ]
See 1 reply...

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

  • duck11
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.
×