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J-Pouch ForumsGeneral Discussion
SUBWAY SANDWICH QUESTION
PouchomarxPouchomarx
Pouchomarx i had one of those chicken sandwiches with the Fritos on it, with tomatoes and jalepeno.. so good. i chewed very well. hope its not an issue [ more ]
jpouchmike I eat tuna, but I try to make sure there are no veggies in it (onions and celery) [ more ]
PoucherInTO I eat tuna sandwiches with my ileo and love them - my output gets a little stinky but I don't care much about that! Dig in and enjoy! [ more ]
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J-Pouch ForumsGeneral Discussion
Wound Appearance
A AndeeLWesterz
Jan Dollar Yellow, gooey pus is not supposed to be in a healing wound. You should expect drainage, but more on the clear, pink/straw colored type stuff. Call your surgeon's office and someone on his staff can advise you. If there is also any swelling or redness around the wound, or any fever, be sure to report that too. Jan [ more ]
lholdem Mine was also open "dirty" style. It had a little bit of oozy stuff but not a whole lot. I rinsed it twice a day with saline when I re-packed it. My surgeon said to avoid getting soap in it while showering since it could irritate the wound, so I would let plain water run down my abdomen for a while after I was finished since inevitably you can't keep ALL the shampoo and soap coming from above out of a wound near your waist. Does the skin around the wound look red and inflamed? That might be... [ more ]
Mysticobra Short and simple. I had open wounds also but was attached to a wound pump that sucked all the liquid out. worked like a charm. Showering with an open wound....ouch...and ouch again. I had to keep mine totally covered. I am surprised they let you do that. Richard. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch function
M MarkGregory
Jan Dollar Indy, yes, what you describe sounds like adhesion related partial obstructions. What would a doctor do? Most likely nothing, unless this becomes a chronic issue, or so acute as to require hospitalization. If it is a severe, acute obstruction, they do plain x-rays to see how bad it is, and you either wait and see with IV hydration and bowel rest, or they insert an NG tube to decompress, or surgery in extreme cases. If it is a chronic thing that causes you frequent pain and disability, then... [ more ]
Mhg26 Indy I've dealt with the exact same type of blockages in the first year after my take down. I too would feel a sort of mass about a few inches up and to the left of my belly button. I remember after many CT scans that the docs told me it was one particular area that was causing the problems. It's definitely a pain to deal with since we never really know when it might happen. I think the most frustrating thing for me is when I eat a food and function okay from it and then have a mild blockage... [ more ]
Indy_Dave think that is what is happening to me - 5 years no problem. lately when I eat it seems to be blocking about four inches above the belly button and a little to the left...makes a decent bulge in that area and then passes after a couple of hours but is a little painful...could that be adhesions? what would a doc do to find out what it is? hopefully it resoles itself... thanks [ more ]
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J-Pouch ForumsPouchitis
Sore Butt
D dilion
Rev Lenny Been suffering similar butt issues and would appreciate any suggestions. When going to the toilet to empty my S Pouch it is like passing glass!When I saw my consultant he gave me a steroid cream -Dernovate- to use for two weeks, but this also caused the skin around the area to feel as though it was burning! I also have what I call 'ridges' around the area, so something isn't right! My diet hasn't changed so its not food related. And the itch is hellish!!! After applying the Coloplast Barrier... [ more ]
dilion Thank you very much. I will ask my doctor to prescribe them. I have a compounding pharmacy here that can make it. I will have to get the sitz bath thing... Thanks again.. [ more ]
jeane I use prescription nifedipine or rectiv(this one does cause a bad headache quickly but over time with more use this lessens) for anal fissures. Both creams are not cheap. Nifedipine is a compound and has to be mixed at the pharmacy and not all pharmacies do this and it is about a 60 copay for me and rectiv is about 120 copay (all depends on your insurance). I have tried tons of different creams when I am sore to no end, but these two work the best to heal the cuts. Also, lots of warm sitz... [ more ]
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J-Pouch ForumsGeneral Discussion
Just had takedown
ccanepa456ccanepa456
TinCan A bidet will help tremendously with the butt burn. I rarely have that problem anymore but can't imagine life without my coco. Still use it everyday. [ more ]
GinLyn It WILL get better! Wipes & sitzes are a must. The cream will help. Keep the area as clean as possible, watch for any rawness. Sitz baths are awesome just for general comfort. Are you eating anything like rice or bananas? They can help slow things down as well. Hang in there, Gin [ more ]
mgmt10 Not what you want to hear but this is all normal and part of the healing process. You need to be patient as hard as it is. Things will improve over the coming weeks. A sitz bath will make your sore bottom feel better. What is your diet like? I think you can up your Imodium but always check with your surgeon first. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
13 weeks and pouch not behaving
I irenepuss
lholdem Irene, I feel for you! The combination of loose + lethargic bowels is quite the treat, eh? I've also had continuous nausea, loose stools and gas. The gas is definitely my least favorite, since we all know us j-pouchers have trouble passing it without stool, and even less so when a baby is putting pressure on your bowels. It just builds up and gets sooo painful. I've also had stool leakage here and there... I'm at 31 weeks now - I can definitely say I'm not as continuously miserable as first... [ more ]
ksr Before I got pregnant: If I lifted heavy items, I could have stool leakage. If my body was not "feeling right" I could also have stool leakage. After I got pregnant, I had stool leakage all the time. I sometimes would wake up in the middle of the night with stool leakage on the sheets. It was a mess. I got through it though. After I had my baby, I had major complications. My gi system shut down. I ended up with an NG tube. It was a bad situation. I did have a scheduled c-section. It took a... [ more ]
REM ksr, Did your leakage stop after your pregnancy? Did you ever have leakage before your pregnancy at all? Or just during the pregnancy? [ more ]
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J-Pouch ForumsGeneral Discussion
Weight Lifting?
G Goody21
Pluot My intention was to focus on regaining strength in my core so that I wouldn't need a hernia belt in the future. If you have a congenital or permanent weakness in your abs (e.g. due to a permanent colostomy) OR you have a need to lift heavy loads sooner (e.g. caretaker for a child), the hernia belt makes sense to me. Even with the belt I wouldn't change the pace I took. [ more ]
Goody21 Your not cheap your risky! Lol. Maybe we have different guidelines then. Hernia belt might allow me to work a little quicker than you did. [ more ]
Pluot No, I never did. Can't really say why except that I'm cheap and didn't feel like seeking one out. [ more ]
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J-Pouch ForumsGeneral Discussion
did i make a mistake in getting a J-Pouch?
fqfq
Jamesforpm 18 months on, are things better? [ more ]
Bethie fq thanks for posting - my daughter is due to get the takedown next wednesday and she seems to be ignoring the getting used to it part - I appreciate your comments and those that posted back to you because it gives me more information when she starts (and hey maybe it will be an amazingly quick recovery) freaking out - I can lead her to this thread so she can see. [ more ]
Lizzie Knott It does take up to a year for some of us. It can be frustrating. it is not permanent. [ more ]
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J-Pouch ForumsOstomy & Skin
wet wipes ?
PouchomarxPouchomarx
Former Member ❤️
PoucherInTO I have huggies wipes for sensitive skin - there is no alcohol in them. As for adhesive removal wipes Coloplast (and probably other brands) makes sting free wipes that work well for me. Just be careful with wipes - some leave a residue and then it's a pain getting your wafer to stick. [ more ]
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J-Pouch ForumsGeneral Discussion
hot foods with ileostomy ?
PouchomarxPouchomarx
GinLyn I have a bit more output, but nothing horrible. I LOVE spicy food. I just try to be careful, lots of liquid, balance with banana or rice, etc. Gin [ more ]
Jaypea I think everyone is different. When I ate spicy food with my ileostomy I had increased output. I did not notice a change in smell but I was definitely emptying much more often. [ more ]
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J-Pouch ForumsGeneral Discussion
Not news I wanted from surgeon....
PouchomarxPouchomarx
BillV It appears that you have some time with your temporary ileo to make an informed decision on what will work out best for you. When my GI discovered high grade dysplasia in a critical area and said my J pouch had to go, I had time to get a second opinion (at Mayo Clinic), research my options and locate the surgeon. All along, I have had strong aversions regarding the bag and its associated issues. I’ve been thru a divorce and the dating scene and found that it was essential to feel good about... [ more ]
Onwisconsin Does anyone else think our system of health care is entirely messed up if a guy has to balance his health against other expenses. Should this not just be a right? You may be able to go to court or file some motion that reduces child support for the short duration. I don't know if thats possible. I know you want to care for your kids, but if you don't have the means. Additionally, Do you have short term disability insurance? I don't know if there is a social security type of medical hardship... [ more ]
Nomoremeds That's a tough situation. I wouldn't worry too much about the mention of Crohn's at this point. They have to at least bring up the possibility of Crohn's whenever someone has a sinus or severe inflammation in their pouch. Just take this time to get stronger/healthier. They won't be redoing the pouch for at least 3-6 months after ileostomy surgery regardless. Try to save money if possible. Perhaps even try and talk to your creditors to see if you'd be able to work something out. You're in a... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
When did you feel the first kicks?
S SKadett
ksr I only felt my daughter move one time during my pregnancy. She kicked in the middle of the night and her foot came in and out. I did not get to see it. It felt great! I was worried my entire pregnancy because I could not feel her move. I think I had so much damage to my nerves that that prevented me from feeling her. [ more ]
jodiloveslife Mine were about the same as yours--popcorn like. Now I am 21 weeks and I can totally feel her all the time--so neat!!! Congrats too!!! [ more ]
SKadett I will do that!! [ more ]
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J-Pouch ForumsGeneral Discussion
Crazy Itching After Abscess Excised?
D DeathStalker
rachelraven My stinking fistula itches from time to time, too. Not sure but that it's irritated from the drainage. I use some barrier creams and it helps some. I like A&D, Bag Balm, and Critic Aid Clear Moisture barrier from Coloplast. If it gets very bothersome, I do a Sitz bath with Epsom salts, or take a ridiculously hot bath, and soak. The stupid thing is small, and benign looking from the outside, the little yellow seton is small, but, pardon the pun, it's all a real pain in the a$$. Your... [ more ]
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J-Pouch ForumsHelp! Need advice now!
pouchitis cuffitis rectovagional fistula
A aimeey17
n/a My cuff is "long", and my pouch is "short", according to my last EUA results. I have dealt with years of cuffitis and pouchitis and developed an RV fistula which originates at the dentate line. This has had a draining seton in for nearly 2 years. I have had sacroiliitis and iritis off-and-on for about 15+ years, but these have calmed down markedly in the last 8+ years or so. I also had fevers and felt very ill prior to the fistula breaking through - not sure if these were due to the... [ more ]
Pouch4Wf When they told you that your cuff was larger than normal, did they give you an approximate measurement? My wife was left with a cuff that was 4x larger than normal. This puts you, unfortunately, into a completely different category of problems than a normal cuff. The extra rectum tends to behave very poorly with the pouch and is very hard to control with standard "cuffitis" treatments. For us to learn that this was actually the problem, we had to seek a second and third opinion. A very good... [ more ]
Jan Dollar I have had no corrective surgeries. Sometimes when cuffitis or pouchitis is not responding to treatment, they do a temporary ileostomy (a diverting ileostomy, or loop ileostomy is what it is called). This gives your pouch a rest so you can live your life while you sort out how to get this healed. It does not correct the problem, just provides bowel rest and gives you time. Pouchitis would not show up on a small bowel series unless there was something severe causing the pouch to be misshaped... [ more ]
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J-Pouch ForumsGeneral Discussion
Does ED get worse after takedown?
S shnwilkins
CTBarrister I think I was told the same thing. However like I said I had my takedown at age 29 and had almost 15 solid years after that with no ED whatsoever. But then I got older, and when you get older, it is going to happen. I also started getting gray hairs in my goatee, although not until my late 40s. These are things that happen with age, and they cannot be stopped from happening. [ more ]
shnwilkins From what I was told, if the nerves are going to get damaged it will most likely occur when the jpouch is being constructed. I dont think they even mess around down by those nerves for the takedown surgery. I just thought maybe things may change since the rectum area will now almost constantly be filled or filling and that will somehow interfer or mess with those nerves. [ more ]
CTBarrister I had 15 great sexual years after takedown and before the 1st episode of ED in my life which occurred in 2007 at age 43. So I would say no- so long as the microscopic nerves controlling sexual function are not damaged, in which case there could be a different result. I had always thought that was a bigger risk with step 1 surgery, based on what my surgeon told me, but I am not sure you're "in the clear" of that risk with the takedown surgery. ED happens to many males in some degree once you... [ more ]
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J-Pouch ForumsGeneral Discussion
advice needed
J Jason4
rachelraven Has she had a scope recently? You said tests, but not specifics. Maybe they should get in there and look around? You never know what might have changed "inside." And some tests for C Diff are more sensitive than others. Make sure they did the one with higher sensitivity. [ more ]
GinLyn I don't know and it must be infuriating to have them not seeming to care too much! Do things like bananas help slow her down at all? The old-fashioned BRAT diet might help. Gin [ more ]
Jason4 Yes & the results came back negative. It's very hard to see as my grandmother is getting very discouraged. [ more ]
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J-Pouch ForumsGeneral Discussion
New GI and some new information
rachelravenrachelraven
Pouch4Wf Due to my wife's recent developments, I am super hyper-sensitive to anything that is steroid related. Are you on any steroids? Any use in the last year?? Thinking your fatigue and fevers could be adrenal related... Anyway, if you have any recent steroid use, might be useful to have a morning cortisol test... Dan [ more ]
Roni* That is some really interesting information. Thanks for sharing it. Let us know if the b-12 injections work for you. I used them for awhile but didn't notice any improvement. But maybe I wasn't on them long enough. I moved out of state and never went back on them. Currently using liquid B complex with high potency B-12. Just started so can't say if it's helping. In the past I've had trouble with b complex because they're so over the top in potency, but I found some pretty mild ones except... [ more ]
rachelraven He has me doing 1 B12 shot a week for a month, and then monthly. B12 is apparently on back order, groan, but another pharmacy says they have it, so hopefully I can start tomorrow. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Codeine Alternative for Dehydration
B briggsie
Jan Dollar If you have a PM you have not read, there will be a new tab at the top of the forums list indicating the same. You just click on that. Otherwise, you can go to your private messages by clicking on "J-Pouch Community," then "Personal Zone," then "Private Messaging." Jan [ more ]
PoucherInTO Hi briggsie I too struggled with hydration issues and it ended up being my nephrologist who helped me work through them. I was drinking the recommended two litres a day, but after tracking my ins and outs (stool and pee) with 24 hour collections and blood work numerous times it turns out that in order for me to be properly hydrated I need to drink at least 3.5 litres a day - and I aim to drink more like 4 litres because that is when I feel the best. 2 litres a day may not be enough for you,... [ more ]
briggsie @Ep - I am probably being blind but I cant see how to access my PMs, any tips? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Rectal bleeding after ileostomy preventing j-pouch surgery
L LorieSly
Pluot The vast majority of the people on this site are here because they have problems with their j-pouch. Conversely, the overwhelming majority of people with j-pouches (>90%) don't have any problems at all. Don't let a site that is specifically for supporting j-pouch problems convince you that it's not a good option. Cuffitis is not the norm, and rectal inflammation prior to surgery is not predictive of cuffitis. It just isn't. Every UC patient has rectal inflammation, it's a defining feature... [ more ]
jeane Refractory cuffitis is cuffitis that is usually not treatable by medicines or can be treatable but requires constant medications to keep it quiescent [ more ]
LorieSly Rachelraven, I appreciate your response. I'm so sorry your own daughter is now diagnosed, as you were. I too think we need to give Remicade an honest try before abandoning it. I hope I can get the adult GIs to consult with me. Last two times I tried, they would NOT see a ped. [ more ]
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J-Pouch ForumsGeneral Discussion
Question
L LisaT
rachelraven I didn't see ANYone but a PCP for nearly 20 years! I was doing that well. Fistula necessitated a return to a colorectal surgeon, and I went back to my original one. Had only seen him once in 2002, for a letter to tell my OB Gyn to give me a C section. I got a referral to a GI guy he works with, and saw him Monday. He was great, they both were, and they came in and saw me together. I'm pretty sure I'll be moving on to most care with this GI guy, and only seeing the surgeon if I have seton... [ more ]
Lesandiego My surgeon. My GI does not treat pouches. [ more ]
CJB My surgeon tells me to come see her whenever I have a problem. She cares about my pouch almost as much as I do! I love her for that. CJ [ more ]
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J-Pouch ForumsHelp! Need advice now!
Struggling to go
ScottcooperScottcooper
Rebe0505 hi sounds to me like symptom of pouchitis..you need a scope to see..if so a round of antibiotics is the fix.. [ more ]
Scott F Might be pouchitis, too. I think your doc should have a look. [ more ]
Scottcooper I haven't spoke to my surgeon since I've been having problems. Yeah it is a lot more watery than usual and feels like there's something in there but it's stuck. I did think it was trapped wind but after I do pass wind it's still the same. I will make some phone calls today a see someone, thanks for your help [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch 2nd surgery of 3 step
T Thompson
shnwilkins I just started by eating saltines because they were easy to get down and the salt made me drink more water. I found that white rice and mashed potatoes were also fairly easy to force down. Hope that helps! [ more ]
Thompson That's great to here! Glad your recovering well from it. The doctors are trying to force me to eat bread but I just can't, is there anything you would reccomend me to eat or regain my appetite ? [ more ]
shnwilkins I just had step 2 of 3 done close to a month ago. It will get better, I had very similar symptoms as you have and I am just starting to feel normal again. I think due to the fact you didnt eat for a long time it takes awhile for your body to get used to the new setup. I too felt nauseous whenever I ate for about 2 weeks after the surgery. Also my output is slowing down. I wouldn't recommend it right now but after about 4 weeks you should start taking Metamucil fiber before every meal to help... [ more ]
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J-Pouch ForumsGeneral Discussion
Night Incontinence "Tools"?
SK Susan Knilans
Susan Knilans Okay, a very long-overdue update: I found Hubby a new gastroenterologist. This fellow looked carefully at the sigmo results the last guy found. He told us that Hubby's pouch and intestinal lining was very inflamed and there were many ulcers. He said "That's why you poop all the time---the inflamation." So, he blessedly took Hubby off the very expensive and as it turns out worthless for my Hubby's condition, and put him on a nightly cortisone enema. As the inflamation died down, the muscles... [ more ]
Onwisconsin Yeah, for the mean time: I am such a heavy sleeper that I would sleep right through using the bathroom as well when I first started out. I realized I needed to set an alarm about 4 hours into the night so I could get everything out and go back to bed. I still normally get up once in the middle of the night but my body has started to realize the feeling that signifies bathroom time now. [ more ]
suebear And he should be doing kegels to strengthen sphincter tone. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Dark Chocolate Good for the Gut
KangaRoeKangaRoe
Savannah Also love, love dark chocolate, especially the "LOVE" brand. So if you love, love dark chocolate, try it out, making the yippee statement love, love, LOVE dark chocolate. Savannah [ more ]
aka KNKLHEAD .. nice! My favorite is Hershey's dark chocolate with almonds. I think almonds are also anti-inflammatory? And I think the dark chocolate has to be a certain percentage dark or something? [ more ]
mgmt10 Love, love dark chocolate. Enjoy! [ more ]
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J-Pouch ForumsGeneral Discussion
discharge
U UjohnjC
Onwisconsin I remember blood in my stool right following surgery. There is a lot of scar tissue and tissue that has just been sewn together. That said, if you are ever unsure of something, contact the doctor or their nurse. [ more ]
UjohnjC I've always had mucus never blood from bottom unless dr just did check up [ more ]
dtmack If this is discharge from your bottom, it is completely normal. I have had almost full bowel movements even when diverted with the loop. Sometimes things get down there. Also, even though you are not using the pouch yet, it still produces mucus. It has to come out sometimes. Good luck [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bag leaking and won't stick
AM Army Mom
MarkGregory Has anyone tried the adhesive-less bag systems, like nu-hope, or others? I dont think they would be very good for sleeping, but looks like may work ok when upright, and not laying down. [ more ]
Army Mom Thanks for the replies everyone, we really appreciate all the help. Roni, he is back at work today and feeling better. You were a lifesaver with that powder, it really did seem to help and my husband wanted me to tell you thanks! I had also heard of the Milk of Magnesia and will keep some of that on hand. Bag stayed on all day yesterday so hope it goes well while he's at work today. Have a great day everyone. [ more ]
kta I had this exact same thing happen. My stoma nurse helped immensely. I was given a strong cortisone spray to use under the wafer, a belt and other things I cannot remember as it was 10 years ago. I hope you get into a nurse soon and am sorry you have to deal with this. [ more ]
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J-Pouch ForumsK-Pouch Korner
Dr Andreas Kaiser USC LA, CA
JaniceMJaniceM
suebear Dr. Beart at Glendale Memorial is retired from surgery. He still sees patients in his office, though. Sue [ more ]
dpol I do not think I have pouchitis because my output is very consistent and not runny. My only issue is that my pouch does not seem to hold the same amount it used to and when it gets kinda full my valve doesn't work as it should. Thus I have to do special things to enter my pouch that I can not do in a public restroom. Thanks [ more ]
Bodoni I would warn anyone who thinks they may have pouchitis - to first contact your surgeon / GI doc. They may or may not order a scope. Flagyl and or Cipro usually works after a 12 - 14 day dose. I am not against probiotics or vitamins. But if you do have pouchitis and you let it get a foothold - you could end up very sick. Then it will be even more difficult to cure! Trust me, I have had a K-pouch since 1976. [ more ]
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J-Pouch ForumsGeneral Discussion
Electrolyte Replacement Powders For Severe Dehydration
CTBarristerCTBarrister
n/a I keep a stash of "Electro Mix" electro mix electrolyte replacement (can be found on amazon) in my cupboard and in my purse. It comes in little packets, one pkt. makes one liter of "sports water". You can make it as diluted as you wish. I switched from the others as this contains stevia rather than other sugars. [ more ]
Nomoremeds I'm not sure there is a "quick fix" to dehydration, but I highly recommend Vitalyte (originally known as Gookinaid). It is an electrolyte replacement drink with less sugar and calories than Gatorade. You can order a big tub of powder on Amazon for fairly cheap. http://www.vitalyte.com/ [ more ]
PoucherInTO I second Jan's advice regarding the Pedialyte, I keep a stash at home "just in case". I also have a few bottles of G2 in my fridge and I keep salty crackers on hand to drink with water if needed. I hope you are feeling better, and if you feel dizzy or lightheaded with your dehydration head to the ER and let them help you out - don't drive though, have a friend or cab take you. Best of luck [ more ]
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J-Pouch ForumsGeneral Discussion
10 year who don't want to live .
L LilMoe03
Mrs. Sushi LilMoe03, My husband & I have lurked this forum for years. When I read your post, I had to register. I'm not a mom...I can only imagine how tough this must be. It's terrible as a wife. We decided not to have kids as a result of the significance of my husband's illness(es). My heart breaks for you because I know how hard it is to sit there & not be able to fix it for him. I understand how you feel when those very intense feelings are shared with you...as my husband does with me. And... [ more ]
kk I do not have any answers but I will be praying for him/you/doctors. When you don't know what to do or say just say JESUS. I've had to many times in my life. It is a song. [ more ]
Torg LilMoe03 I feel for you in a major way and understand that it is difficult. My son had his colon out when he was 4 and now he is 12. Raising a child like that is difficult and there are challenges for sure. Subzeromambo has some great advice on the Camp Oasis. My son has gone 2 times. Has had a great time. It is a way to connect with others that have issues too. Now all of that being said, sure my son gets pissed off at his situation. He knows he got a raw deal, I encourage him in all of the... [ more ]
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J-Pouch ForumsGeneral Discussion
Hernia Lapo or Cut open
S SteveRM
FrankH Steve, Glad to hear you're back home recovering. Hopefully you will get some relief! I expect they will find the same that I have tons of adhesions plus the 2 hernia sacs. That is why they sent me to an abdominal reconstruction/plastic surgeon. I'm scheduled on April 2 at Methodist. What kind of surgeon worked on you? And how many days were you Hospitalized? Did the surgery affect your bowels any? I'm just hoping & praying this doesn't mess up my jpouch because it is working like a... [ more ]
SteveRM Frank I went with the lapro but they ended up cutting me open. I had too much scar tissue. I got a pretty good scar now. Just had the surgery last Tuesday so in recovery mode. They also found that I had a parastomal hernia which may have been causing my blockages but there were tons of adhesions also. Time will tell on how good the surgery was. [ more ]
skn69 Hi Steve, Frank, I have had a few laproscopic surgeries for hernia and galbladder repairs. No contest as compared to open surgery. Much easier in both anesthetic, post op recoup and long term recoup not to mention the scars. I have had quite a few hernias (5) and personally speaking I do prefer the laproscopic kind. But I made sure that my surgeon was a specialist and very skilled at what he did plus he had already been through k pouch surgery with me and knew my insides well. This is all... [ more ]
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J-Pouch ForumsGeneral Discussion
Chicken Pox
ManchesterManchester
Manchester Shainy Having j-pouch surgery doesn't cure our Crohns or colitis. I still have severe Crohns with all the trimmings just no colon for it to have a go at. I have many fistulae which is the reason for my humira. Thanks [ more ]
skn69 The usual but all considering, I really cannot complain (probably because no one would listen!) As my Rhumy said, 'if you wake up after 50 and you are not in pain somewhere, then you are not alive!' So I'll take what I've got and not trade it for whatever anyone else has Hope that she is doing well and stays well a long, long time.... Here's to good health! Sharon [ more ]
beckysmom Yes, lets hope for you both! I am just getting over a serious case of shingles and I hope that is in no one's future! No, no 2nd times for childhood diseases, thankfully. She has enough to deal with. She is hanging in there, thanks. How are you? [ more ]
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J-Pouch ForumsGeneral Discussion
Diarrhea related question
A Amstobar
Dort I've had good results with Metamucil Wafers. If you try them and find them helpful you can get them almost half the price from Amazon. [ more ]
Scott F As you've noticed, diet isn't the only thing that influences how your gut works. Some of it is out of your control. When I have a cold, all bets are off. I do my best and muddle through. [ more ]
Amstobar Hi, Scott, I do take citrucel before each meal. I stayed away from the others like metamucil, as they made me pretty gassy long before I had the conditions that led to my jpouch (diverticulitis and a botched surgery). I think I might increase how much Citrucel I'm taking, as it was extremely helpful when I started taking it. I'm only taking 1/2 the max dose right now. Rachelraven, I do track my diet in the sense that I'm keeping it extremely simple right now. I'm really just sticking with... [ more ]
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J-Pouch ForumsPouchitis
Pouchitis medications???
V van
Jan Dollar Try reducing the dose by half. That may be enough to keep the pouchitis symptoms at bay and also reduce the side effects. The fact that you are very active is even more of a reason to take this side effect seriously. A ruptured Achilles tendon will interfere with your work much longer than taking a few days off now to deal with diarrhea that may occur with a dose reduction of your Cipro. Jan [ more ]
Kratzer777 As soon as I realized the cipro was causing the problems I'm having, I tried to stop taking it (without success), I'm not able to get in to see the different dr. for another 3 weeks, my job is very physical and I'm on my feet all day and the pain is severe, I don't know what to do. [ more ]
boy's mom Have heard a high dose rifaximin, a very daily 3x550 can work and someone else told me they have used mincycline daily 2x100. [ more ]
See all 19 replies...
J-Pouch ForumsGeneral Discussion
Major swelling/edema HELP!
M MamaMelissa
Jaypea There is a phenomena known as "third spacing" that occurs frequently after abdominal surgery. It will resolve on its own over time. Be patient, stay well hydrated and keep up with your protein intake. Please don't use any diuretics or medications for this. You are very go fresh after your surgery and just beginning to heal. [ more ]
skn69 Are you eating well? Are you having any 'unusual' pain? What does your doctor think? If you are not having severe pain, no fever and all is well then it could just be bloating and swelling and all of that will resolve soon enough. You might be able to nudge things along by drinking warm lemon tea (squeeze a lemon into tea) or homemade lemonaide. It is way too soon to start taking stuff at this stage in your convalecence. There are some diuretic teas but they might irritate your bowels too... [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
daily regimen/ lomodil/ fiber
C Chrissey86
Scott F Everyone is different. As you are experimenting, try to change just one thing at a time, so the results will make a bit more sense. Give the change a few days, if you can, since your diet and condition will vary all by itself from day to day. You might want to consider a target that's less than perfect, since that will make it easier to avoid medication side effects. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Savlon Antiseptic Cream Works
dcpropilotdcpropilot
Mema 1 I like it a lot - think that Calmoseptine is great, but it makes such a mess - have her try that as well. Took at least 3 weeks to get it though, but well worth the try. [ more ]
beckysmom Thanks. My daughter was using "Dr. Wheatgrass" because she hates the burning with the calmoseptine. I think I will tell her about this Salvin. [ more ]
Mema 1 Doesn't burn at all, and it goes on very smoothly. At first I didn't think that it worked, and felt that Calmoseptine was better, however, I've used it a few times and love the consistency and the fact that it's so so creamy, and I find that it really works very well. [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
Thank you everyone and cautiously optimistic
AllyKatAllyKat
Rebe0505 me too!!!fingers crossed for you... [ more ]
Jan Dollar Sometimes things have to get worse before they get better. Seems like a dumb thing, but when you are doing these sorts of things, they have to wipe out everything before normalcy sets in. Tough to be patient, but that is what it takes. I sure hope that this is the real turn around you were hoping for. Jan [ more ]
PoucherInTO Hi AllyKat One thing is for sure, you are a strong fighter! You're giving your pouch 110% and I hope you have many more good days Feel free to PM me at any time [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Struggling to get to take down!
L Ljz
Ljz I go to University of Chicago and my surgeon is Dr. Hurst. He is great, as are the others in the General Surgery Department. I go to the Gastro Dept. there as ell, which is how I ended up with surgery there. I did lots of research and 2nd opinions before deciding he was the surgeon for me. [ more ]
UjohnjC congrats ljz i had my 1st surg april 13 2nd nov 13 hoping to have takedown in may.If yip don't mind me asking were you had your surgery?and surgeon? [ more ]
TE Marie It's nice to hear such Good News! Congratulations! [ more ]
See all 20 replies...
J-Pouch ForumsGeneral Discussion
Off topic: What can I tell someone who has had a gastric sleeve surgery about diet?
skn69skn69
skn69 Thanks Torg, She is starting to adapt to her new anatomy and digestive system. In the begining it was all coming out as fast as she was filling it up...now things have slowed down and she is starting to master portion control a bit better. Still a bit confused I think but the wqeight is coming off and she has a bit more energy. I keep my fingers crossed that this is a final fix for her. She has been battling yo-yo obesity for most of her life. Any foods that you would advise against? Sharon [ more ]
Torg I have had a gastric sleeve, with my J pouch. My wife has had a gastric sleeve. It is interesting because my sleeve is bigger, and I need to eat a little more than she does. One of the biggest challenges is the portion control. I had to make mine work so I could lose the weight so they could do my take down. That being said, one thing I have learned is if I over eat it is coming out fast at either end and sometimes both. One thing that my wife and I done that helped was switched to small... [ more ]
ActiveUC'er I'm glad I don't live in France then I'm glad she has a friend open to listening to her issues (physical health and otherwise). [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Weird pain
H heyitsles
heyitsles Okay thank you Jan, you are a star! I will give that a try. [ more ]
Jan Dollar Yes, this sounds like a partial obstruction. Try to avoid much solid foods, increase fluids, especially juices and broths, and keep moving around. Jan [ more ]
heyitsles How can you tell if you have a partial obstruction? In addition to all the weird pain I have noted in my first message, a couple days ago I noticed my bowel really slowed down and it is very difficult to go to the washroom I have to work at it, and the normal volumns I am used to are just not there. This started Wednesday evening, Thursday I was extremely nauseous all day and evening and had not appetite.I vomited in the morning but it was only saliva because I hadn't eaten. I had some brief... [ more ]
See all 16 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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