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J-Pouch ForumsGeneral Discussion
Seeds?
runner4449 Thank you all! I knew whether it was good or bad I could count on you for feedback. I must say since I had the crackers in soup, and the soup made them mushy, I know I didn't chew very well. I've eaten nuts without trouble because I'm sure to chew carefully. In fact, I normally do chew thoroughly, but didn't with the soup and crackers. I've been pretty amazed at all I've been able to eat lately to include things like salad and raw veggies. It's a relief to know if something gets through... [ more ]
CTBarrister I have lots of foods that sometimes come through undigested and it does not stop me from eating them. Whenever I eat a large salad it comes through partially digested even if I chew it well. All you can do is chew it well, and if you see whole seeds perhaps you need to do a better job chewing. But it is not going to harm you, you just are going to get less nutrition out of these kinds of foods unless you chew hell out of them. BTW I recently tried Sunbutter which is Sunflower seed butter... [ more ]
kathy smith Yes, eat it all - by all means... And those seeds go right through the coloned too but because they usually have a much more solid stool it's not as visible. I can consume huge bags of sunflower seeds, popcorn, and all those supposedly 'bad' foods. There are no bad foods unless YOU say they're bad - like zucchini. Yuck. But that's because it's a mushy tasteless vegetable. Eat on. kathy [ more ]
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J-Pouch ForumsGeneral Discussion
grapefruit and drugs
Scott F I stand corrected. Thanks for catching that, Jan. [ more ]
ISeeUC Grapefruit? Blech! [ more ]
Jan Dollar Unfortunately, it actually is not true that this interaction only occurs when the juice is consumed at the same time as the drug. The effect of blocking the enzyme can last for more than a day. But, the effect is not the same universally, so itdepends on the drug, the dose, and the amount of grapefruit consumed. So, something to be worked out with your pharmacist or doctor. If you have grapefruit daily, perhaps you can get by with a lower dose. [ more ]
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J-Pouch ForumsGeneral Discussion
3rd day on hc suppositories for cuffitis.
Jan Dollar Probably, but it could just be subduing symptoms without actuallytaking care of it. One step at a time. Right now, HC suppositories... Merry Christmas Tom! Jan [ more ]
Guest if cipro does ultimately calm it does that mean im on the way to healing or is it not that simple? also, can my current surgeon tell me from the sig he did last week if my old surgeon did a good job on the size of the rectal cuff left behind? [ more ]
Guest if cipro does ultimately calm it does that mean im on the way to healing or is it not that simple? also, can my current surgeon tell me from the sig he did last week if my old surgeon did a good job on the size of the rectal cuff left behind? [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch Creation in 3 weeks, Questions...
JessGoguen Hi, Although I am not a veteran of the jpouch I am using mine and pretty well, at least I think so. I had a two part surgery w/ 3 months in between. I found the recovery after the first to be rather difficult and my bag and I battled constantly through the whole thing. I am 2 1/2 weeks post takedown and pretty happy with the results. The first week was tough and I dealt with butt burn, being tired and feeling unsure when I left the house but now I am comfortable. I was able to go into work a... [ more ]
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J-Pouch ForumsGeneral Discussion
in need of some help please!
chal You did not say how long you have had your pouch. After I had mine for about 4 years, I started having pain and nausea on my left side. My concern was scar tissue. Scar tissues does not show up on any scans. After some tests, my GI doctor determined that I had some gallstones, but that they were not of a size or location that should be bothering me. He reluctantly sent me to a general surgeon to remove the gallstones and look for scar tissue. Low and behold there was scar tissue. He removed... [ more ]
skn69 Nick, So sorry that you are living through this nightmare...On my list would be a kink, a twist, a stricture, diverticulitis (can it occure in the small intestine?), a hernia and or a kidney problem....not that I wish any of the above on you....but those are what comes to mind. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
please help us rookies with technique on the thrown
chal After my surgeries, I was told to hold it as long as I could in order to stretch the pouch. But if I'm away from home, I don't do that. I just sit in normal position to empty. I know I'm done when I pass gas. How much I push varies depending on the thickness of the stool. I do not think it is good for the pouch to strain, so I do not take a lot of stuff for thickening. I prefer looser stools over straining and my stools per day are average (got my pouch in '04). I stay on toilet until I pass... [ more ]
Rocket I try to hold it in as much as I can and I have been post takedown since 1994. I try to realase as much as I can but not to force it out because that cretes more problems with my butt that stings. Only a little gas comes out and I feel I have so much more. The only way to get the gas out for me is I have to bend over so my cheeks are completely off the toilet and then much more gas will pass out. Not a little more, but much more. The only problem with this method is it creates a big mess on... [ more ]
Sonja6 Its been 8 years since my takedown and still when I gotta go I gotta go. It doesnt care where I'm at. But I do usually do try to go before I go anywhere. And I avoid situations where i wouldnt be comfortable using the bathroom. I mostly hate when you go to someones house for the first time. And there like " oh ya, our bathroom is right there off the kitchen"!! Thats the worst. [ more ]
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J-Pouch ForumsGeneral Discussion
Final Surgery for J pouch
Laurie K Congrats! You will NOT regret it a bit. I DOES take some time, as you know. For me...a bit longer. Even with that (pouchitis,complications,etc.) it was well worth it. Going on 6 years for me now. I'm more active than ever and living life to it's fullest. I wish you the same. Just know that it will take some time for your body to adjust. My top recommendation...get a bidet seat. I know it sounds weird, but it saved my life and well worth the investment. [ more ]
TE Marie Congratulations! I hope everything wakes up and you can go home soon! [ more ]
Scott F Speedy recovery, Dew. When I got my pouch I figured I'd call it successful if I could just have two years of not being sick and not wearing a bag. That was ten years ago. I have never regretted the decision. My worst day with pouchitis is better than any day before the surgery. [ more ]
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J-Pouch ForumsGeneral Discussion
pouchitis
mgiamartino yes, thanks. didn't realize until after i posted that there's an entire separate section for pouchitis... [ more ]
Scott F Cipro is what works for me. In addition to cramping, I experience what seems like a very sensitive pouch - a small(er) quantity of content creates an urge to go. BTW, you may want to explore the "Pouchitis" forum instead of the "General Discussion" forum. [ more ]
mgiamartino thank you karbear--i'll do that. [ more ]
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J-Pouch ForumsGeneral Discussion
cuffitis hc suppositories and gravity?
TE Marie I need to lay down when I use Canasa or any suppository, in order to keep it inside long enough for it to do any good. I use it at night when I'm as sure as I can be that my pouch is empty. When I stand up gravity does take over and I need to head to the bathroom. [ more ]
Karbear I didn't notice much of a difference depending on body position while on the suppositories. For me it was more about being able to hold the medication in for 4 hours without going to the bathroom. I found 2 hours before bed just after the bathroom trips following dinner was best for me. I would recommend finding the time of the day you frequent the bathroom the least and taking the medicine at the very beginning of that time for the best absorbtion. [ more ]
jeane It does not really seem to make a major difference to me, but I do think standing up helps the medicine spread out possibly more and drop to the lower anal area. That is just my opinion. I have been taking these on and off with canasa forever and my cuffitis is still pretty active. I wish I had a better answer for those of us suffering with this chronic, debilitating condition. I have recently started oral pentasa to see if this gives me the little extra boost I need to try and get my... [ more ]
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J-Pouch ForumsGeneral Discussion
Doctor
Jan Dollar Other topicals for fissures are nitroglycerine or nifedipine (causes less headache than the nitro). But I would have thought you would have used these before resorting to a seton. Nother option is B&O suppositories (belladonna and opium). Potent, yes, but they act locally. Jan [ more ]
Manchester Jan I have emailed my IBD nurse at the hospital to seek advice regarding creams and lotions as the doctor seemed clueless. I will ask about the meds you mentioned. Thank you [ more ]
Jan Dollar I think you are right. Systemic opiates don't address that sort of pain. Do you have topical anesthetics, like lidocaine? That can treat the fissure too. Even a sensory nerve block would make more sense than just throwing pain pills at it. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
reversal incision wound healed up too fast?
Sonja6 I would just say thats a good sign Mine healed super fast to. [ more ]
Jan Dollar As long as you are not having symptoms of increasing pain, pressure, fever and the like, all is good! Some people just heal faster than others. I think we get used to things going sideways and are shocked when something goes right! Count your blessings, but be alert just the same. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Should I get my pouch removed and butt sewn up?
Jan Dollar I agree with the above. As long as you are doing well, I would not mess with pouch removal. But, you should still have periodic scopes to make sure nothing is brewing. Jan [ more ]
JillM If you have no signs of cancer now, and if you are able to function and be healthy with the disconnected pouch, you should pursue your family before considering removing the pouch. It is a big surgery and one that will bring on a risk of adhesions, and therefore a risk of fertility problems. Have your family, then determine if the pouch needs to come out for long term health issues. I had a disconnected pouch and didn't do well so had the pouch out before having my family. But if I could... [ more ]
chiromancer My situation was a bit different I had my J pouch disconnected and left in place and an end ileo performed. It was assumed I would have the disconnected J removed at some pt. The disconnected J never behaved and had, after the first month lots of secretions. I just had it removed though my butt is normal looking, not sewn up aka Barbie or Ken butt. There is an anal closure on the backside of the anus. I think the cancer risk in the unused J is real but pretty small. There are some real... [ more ]
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J-Pouch ForumsGeneral Discussion
medicare rates for jpouch surgery
Scott F "Out of pocket maximum" most commonly refers to an annual cap on your total copays (and generally deductibles). Yeas, they stop charging you copays after you reach that amount. There might be a maximum on an individual hospital stay, but that would be unusual. *However*, the out of pocket maximum rarely applies to out-of-network fees higher than whatever the insurance company deems acceptable. So your actual out of pocket would be up to the insurance cap plus the difference between the... [ more ]
UCWarrior2010 Ooops...I meant 60% of 200% of medicare rates. [ more ]
UCWarrior2010 Yes, I do have out of network coverage. I think it is capped at 200% of medicare rates. Also, it has an out of pocket maximum of $4,000. I am not sure if that means that any surgeon's fee above that $4,000 would be covered by the insurance company. Beckysmom - Thanks for the advice. I will call up my doctor's office tomorrow and get the codes. [ more ]
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J-Pouch ForumsGeneral Discussion
Medical necklaces
TE Marie I wear a bracelet and have one for every day and the other for other occasions. I also carry a typewritten listing of all of my medications and supplements plus daily doses and listing of surgery dates and physician references. [ more ]
ActiveUC'er Some people don't wear one, some people do. I personally feel better wearing one (well, a bracelet for me). However, if your doctor tells you to wear one then wear one! [ more ]
Subzeromambo I programmed my med history onto a flash drive I carry on my running gear. The med alert necklaces carry very little information. If I am hit by a car, I want anyone who works on me to avoid doing something stupid. I am allergic to many meds as well as missing seven organs. The flash drive is marked with a med alert tag and attached to an outside zipper so it is very obvious. I also have the info on my phone, on a card in my wallet and will soon have it on a shoe tag that also documents my... [ more ]
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J-Pouch ForumsGeneral Discussion
The dreaded 'your doctor is out, you'll have to deal with his covering physician'
LionsPride So good advice by all, thanks. After trying several things I ascertained my regular GI is 'out of touch' and my internal medicine doctor is on vacation already. He's another issue I won't get into, other than to say he no longer prescribes general maintenance meds for longer than 3 months so he can get you in and bill an office visit. He has many other tricks like that I've spotted. He's on his way out too. Anyway, I didn't hear anything so I called my pharmacy around 7 to discover I had a... [ more ]
liz11 What about your primary care doc? He/she can prescribe antibiotics. My pcp always steps in when i cant get ahold of my gi or surgeon. And she trusts my knowledge and will write me what i neeed. After all, in your case, its just an antibiotic. good luck [ more ]
CTBarrister This statement is not correct. No seasoned doctor who is experienced with treating pouchitis would make such a statement. My pouch expert has an assistant who knows what his orders are and she handles all my prescriptions. Therefore his non presence in the office is an irrelevant issue. However if I am leaving on a vacation I always call well in advance to make sure I am stocked with what I need. My Doctor's practice group is a large group of digestive disease specialists affiliated with a... [ more ]
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J-Pouch ForumsGeneral Discussion
Med Alert necklace?
ActiveUC'er medicalert.org now has jpouch, j-pouch, j-pouch repair, koch pouch (my spelling error), continent ileostomy reservoir, and I don't know what else. They just did a re-do of their website and all of these new options suddenly appeared! [ more ]
kathy smith Risan, here are some previous threads that may answer your questions. kathy [ more ]
Former Member For those of you that have a medical alert for the j-pouch what information do you put on it. I'm not sure what to have engraved on a bracelet or necklace. [ more ]
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J-Pouch ForumsGeneral Discussion
Biotin absorption or lack there of...
RJG Hi Jan, I agree with you about the necessity of finding an actual FAP/Gardner's Syndrome specialist. I'm very skeptical about finding one here in Mexico. Actually, I was surprised when the GI told me that he knew of FAP/Gardners and that he had met my surgeon from New York... No, he's not an FAP/Gardner's specialist. In fact, the sign infront of his office doesn't even mention GI, but Surgeon... He's one of 3 surgeons here in Guadalajara whom perform liver transplants... was a recommendation... [ more ]
Jan Dollar Is your new GI at the top of the FAP/Gardner's field in Mexico or just in the GI field in general? I ask, because the FAP/Gardner's field is a subspecialty that I think you need a GI with special expertise in the field of FAP. I certainly would not try to tell you how to live your life, but not getting the appropriate monitoring could be risky for you. Obviously, it all depends on your specific diagnosis, as I understand that the genetics of this disease are not universally the same. Still,... [ more ]
RJG Thanks Jan. I really appreciate your concise response. At the moment I am on my way to a clinic for making an appointment for certain tests. I will read those articles when I return. You have a point about ever person's experience is different. We have my father's experience and his older brother who didn't develop cancer as did mine, although he was diagnosed with FAP and had his colon and rectum removed, and my sister, two cousins and I... FAP/Gardner's Syndrome is much different for all... [ more ]
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J-Pouch ForumsGeneral Discussion
pain old ileo site
Jan Dollar Sounds like adhesions to me. They are formed within the first few weeks of surgery, last forever, and could cause problems at any time just like you describe. Out of the blue, BAM you have pain, then can resolve just as quickly. The ostomy site is the most common site for problematic adhesions. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Advice needed on whether to go for Colectomy
Jan Dollar Typically, if the diagnosis is ulcerative colitis, total proctocolectomy is recommended once surgery is indicated, except in exceptional cases (such as if Crohn's is suspected), because the disease returns in the remaining colon, requiring additional surgery. Jan [ more ]
parag ask surgen if sub total colectomy possible in your case, because in your case only sigmoid colon is inflammable, they can save rest of large inestine..... [ more ]
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J-Pouch ForumsGeneral Discussion
animal foods?
CeeeeCeeee Early on, after takedown, one of my J-pouch's favorite meals was a McDonald's cheeseburger and an order of French fries. I think I even had a small diet Coke! Go figure! [ more ]
KiwiPoucher Just shows how there doesn't seem to be a normal. Eggs give me immediate liquid stinky output that shoots through. I have been re-examined by my surgeon who says there is no stricture or abnormality there. Does anyone else out there still have the problems Chasingtime has? Wondering whether I should mention it to my Gastro Doc next visit. As I said, I assumed this was my new post pouch way of going to the loo. [ more ]
Disneynut The protein that kills me is eggs. I have the same symptoms as you, straining, etc. I can have things with eggs in them, but not alone. I was absolutely fine with eggs before surgery so it's strange. I love them, but it's not worth it. [ more ]
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J-Pouch ForumsGeneral Discussion
Best Surgeons in Philadelphia Region
Megals My surgeon was Mark Pello out of Cooper University Hospital. He is a great surgeon and I'd definitely recommend him to my family if they needed his services. [ more ]
mgmt10 My surgeon was Dr. Scott Goldstein out of Jefferson University Hospital in Philly. He made me a great j pouch and all has been fine since my surgeries. I would highly recommend him. And the care I received at Jefferson was top notch....I was very impressed with them. [ more ]
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J-Pouch ForumsGeneral Discussion
2 vs. 3 surgeries for J-Pouch
Scott F Your plan makes sense to me. Choosing the right surgeon is very, very important. [ more ]
UCWarrior2010 It seems like there are good reasons to get a 2 or 3 step surgery. A 1 step procedure is just not an option in my case. I guess I will choose the surgeon that I feel most comfortable with taking into account his experience with the jpouch and whether I can afford him. Once again, thank you for your inputs. I truly appreciate it. [ more ]
KiwiPoucher I had the one step procedure, but becuase I developed sepsis (which can be the case in any surgery) I then have to have 2 further sugeries, a temp-ileo and takedown. If I had to make the decision today, I would definately still go for the one step, because I can see that although it is a huge operation your new plumbing starts adapting from day one. If I hadn't had complications I would be 3 months further on now with my recovery. I am also getting obstructions around the ileostomy site... [ more ]
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J-Pouch ForumsGeneral Discussion
too many small poops a day
gleam I take immodium right before bed and usually only go once before work and right after lunch. Although, I probably go 10 times between 6pm-1am. Too much immodium backs me up. I like it loose and poopable. [ more ]
JeffDC You might have a stricture. Multiple small poops is the sign I have when my stricture shows up. [ more ]
Sonja6 oh my goodness!!! I laughed so hard to this post I totaly know what your talking about! Drinking lots of water actualy does help alot. But still i dont have long periods of time were i have "big" poops. Maybe like a whole day. But thats huge But eating anything processed gives me th ekiller small poops [ more ]
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J-Pouch ForumsGeneral Discussion
Lest We Forget......
mad hatter You are not alone in feeling sorry for your self as it has a place in the healing process. I gave up so much of my freedom and career because of UC. Three years after getting my J-pouch Im still trying to find a happy medium. But one thing I know for sure is that my worst days that I now face are nothing like I faced before, so with that as my shield I move forward. It may never get any better but it certainly could not be any worse. [ more ]
KiwiPoucher Thanks for your heartening words Sharon. I think you are so right. It is almost moving from the fighting just to survive phase into the acceptance phase. Also like when you go on a holiday after a hard years work and your body just gives in and you get a bug or a cold without fail. I have got back to my baby diet, think a lot of it is the amount of fibre I eat and making sure it is totally chewed. Thanks again. Caroline [ more ]
skn69 Hi Kiwi, I am so happy to hear that you had such great improvements post op...And know that the sudden end to those improvements and the onset of complications can send you into PTSD...you and your body are finally catching up with each other...your brain is processing everything that has happened to you and you are starting to spiral downward...it is very normal...now that the worst is over you have time to stop and think and it is a very difficult process...you might wish to read some of... [ more ]
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J-Pouch ForumsGeneral Discussion
update with dr shen and B/O
Kelsie I am not sure how common it is. Yes, she used one in the morning and one at night for the most part. I asked about it being a possible cause of her headaches/nausea/vomiting and never got a response. We just decided to stop them and see, and it all went away, so one can only assume it was the cause. She is scheduled for surgery on Tuesday, so she won't be able to use them anymore anyway. She may be a rare example. She also got the "prednisone" side effects from using cortifoam which isn't... [ more ]
Rebe0505 wow kelsie not good the side effects you mention..do not know if that is common or unusual..i am not on them a week yet and i never even thought about such bad side effects..hoping that is not a factor..will keep updating...sorry it did not work for your daughter.. rebe p.s did she use two suppositories one in morning ,one at night?did you ask doctor about symptoms and if that was common? [ more ]
Kelsie My daughter used them for anal pain. They helped. However, a week or so after starting them she developed really bad headaches and nausea/vomiting every day. She went through that for over a month before we suspected the B&O. She stopped using them and after a week or so her headaches and nausea/vomiting were pretty much gone. So, yes they did help her with the pain but we are pretty certain she had bad side effects and stopped them. [ more ]
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J-Pouch ForumsGeneral Discussion
pouchitis could be bacteria overgrowth actually
Rebe0505 remember too he suggested eliminating as much simple sugar from diet as well..which as i said i have done except for raw fruits..and maybe something with a gram here or there..i also take the two most widely studies probiotics..not sure how that factors in rebe [ more ]
Rebe0505 do not know why he recommended b/o instead of lactolose...but that is what i am trying..to my amazement so far working only about 4 or 5 days now ..but promising because in past if i were off my antibiotics one day i was toast..will keep updating..this could be a breakthrough of sorts right? also not sure why b/o suppose to work but i will have to listen to my taping of our meeting..by the way it was my husbands idea to tape meeting after my exam..and it was right on mainly because i am... [ more ]
gleam This would explain why gas feels like it goes backup into our bodies because it does! [ more ]
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J-Pouch ForumsGeneral Discussion
Sudden absolute exhaustion
TE Marie The insurance companies too. [ more ]
Jan Dollar Yeah, I don't understand why it is big business... Somebody's making money on this. Isn't you, isn't me, isn't even most doctors. Shareholders? Makes my head spin. It seems that the big clinic type outfits are most cost effective, like Cleveland Clinic, Mayo, Kaiser... Jan [ more ]
TE Marie I know what the costs of running medical practices are as I use to have doctors and their practices as tax and accounting clients. Before I owned my own CPA firm I audited hospitals for a big 4 firm. I've computed and worked with medicare and other insurance company reimbursements, read hospital board of director minutes, seen what the salaries are for everyone as well as recruitment costs. There are small medical practices that can't make it work with one or several doctors, because of all... [ more ]
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J-Pouch ForumsGeneral Discussion
Upcoming surgery: Advice
Former Member Thanks Sharon, Jeff and Liz. These are all great ideas I've had my fair share of operations (all unrelated to UC) so I don't have much anxiety about the actual operation. Although who knows how I will feel when I'm actually there waiting for the procedure to take place. If I begin to feel anxious I'll be sure to ask for something. Thanks for the advice, I probably wouldn't have thought of that on my own. An eye mask and music will certainly come in handy. That is a wonderful idea. [ more ]
liz11 and bring music/headphones and an eye mask. As jeff metioned you will be awakened at all hours and the combo of music and eye mask can be quite relaxing. [ more ]
Jeff P. My best advice. Ask the anestesiologist to give you something to help you relax before going into the surgical room. I didn't want to think about it or be aware for my first surgery (big surgery and having an organ removed) and don't remember a thing. I was happy to have the bag removed for the take down, didn't ask for meds and was fully aware in the surgical room and was fine with it. Also, bring books, magazines or iPad to read. You will be awakened at all hours and there is only so much... [ more ]
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J-Pouch ForumsGeneral Discussion
I have discovered that I can't drink much alcohol, thank you J-Pouch?
Former Member ❤️
Spooky I'm like CeeeCeee. I've never been much of a drinker, but I do notice that since my colon was removed, I get a tipsy much faster! I feel it after even 1 glass of wine. Oddly, I'm much better with beer. I don't notice much of a change with my pouch, but like I said, I rarely have more than 2 drinks, so it may not be enough to notice. [ more ]
CeeeeCeeee I've always been able to tolerate alcohol and life with a j-pouch hasn't changed that for me. However, it now takes far less of it to give me a buzz! Alcohol does not bother my J-pouch. I enjoy gin martinis and an occasional glass or two of wine. [ more ]
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J-Pouch ForumsGeneral Discussion
Takedown Tomorrow!!
CTBarrister I had two ER visits after takedown and both were caused by my own stupidity. At the 30 day anniversary after takedown I was feeling good. I was on a "high sodium diet", this due to the Pouch's slow ability to adjust to electrolyte regulatory function previously performed by the excised colon. So I decided to celebrate and have a "sodium party". I ordered a small anchovy pizza from the best pizzeria in Bridgeport, CT at that time, bought a 6 pack of V8 juice and a bag of Lays BBQ potato... [ more ]
bootstrap Haven't had butt burn yet, but have been taking preventative measures with a water bottle, baby wipes, and protective barrier ointment here in the hospital. And I have a nice bidet waiting for me at home. :-) So I'm not too worried about it. I also heard that if it's particularly bothersome, I can hop in the shower and use a scoop of Noxema cleanser to cool things down and get a good wash, so I have a blue tub of that in my bathroom as well just in case. Can I ask what specifically sent you... [ more ]
CTBarrister As you start to feel better be patient with incorporating new foods and doing so in small quantities. As your body heals and feels better there is an enormous temptation to "push the envelope" and get aggressive with culinary adventures. For the 1st month you need to take it slow and not push the envelope, otherwise you will take some trips to the ER like I did. What you cannot eat now, you will be able to eat many months from now with no problem and keep that in mind. Butt burn could be an... [ more ]
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J-Pouch ForumsGeneral Discussion
many will benefit from this...
Guest agreed jan, was just coming back with a similar warning. [ more ]
Jan Dollar Very good resource, Tom, with lots of detailed hints, most of which have been recommended here. Nice to have it all in one place, too. Just one word of caution, though. Bowel training is intended for those with some colon or rectum still, not for someone with a total proctocolectomy (note it is for cancer patients, not UC). The ileal reservoir is not as distendable as a rectum or the colon, and does not have the same muscles, so you really cannot "train" it to hold large amounts, or contract... [ more ]
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J-Pouch ForumsGeneral Discussion
bp 80/60 pulse 68 headache dizzy etc.
Jan Dollar There is very little nutrition in rice. Just carbs. You might do better with chicken soup with noodles or rice, so that it has balance, not so carb heavy. If you did a slow taper on the dilaudid, you should be fine. If you were having withdrawal, your pulse would be rapid with an elevated BP. Jan [ more ]
Jan Dollar Even canned chicken soup isquite nutritious? And most of us don'tneed to worry about the high sodium levels. So don't worry if you don't have time to make home made soup! Jan [ more ]
Guest jan, delaudid very slow wean. mountain, thanks. i tried white rice many times and i got badly bound up every time. will cooking it to mush help with that? [ more ]
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J-Pouch ForumsGeneral Discussion
giving up at 10 weeks
Mountain Man Hi Tom, Here's my 2 cent's worth...All of the seeking and searching will drive you crazy and make your symptoms worse. I will agree with Jan 100% that you need to end the vicious cycle. I got beat up once for saying this but I will say it again...Please give your body permission to heal. Your own body is wiser than any person alive. Listen to it! Please try to think positively and find something to be grateful for. Try to get a handle on your anxiety because it will always hold you hostage. [ more ]
Holly M I have always said our rear ends get the brunt of this j-pouch life!! Hang in there! [ more ]
bootstrap FaithnWill wrote: Sorry I didn't see this question sooner... but here is my answer: Because it is only legal in certain states, I don't know of a website that sells it. I have a medical card and get it from a collective (dispensary) one town over. If you live in an area where it is not legal, it may be difficult to get a hold of. If this is the case, email me and maybe we can brainstorm. (Email is on my profile.) [ more ]
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J-Pouch ForumsGeneral Discussion
6 1/2 years later and they found a leak....
Jen R Thank you all for your comments, It's good to know I'm not alone in this. Yes, it is very hard to find anything about leaks. I am more encouraged than before and hopeful to get this resolved. I appreciate the support!! [ more ]
KimR I had the surgery in 2 steps but after the second step I had a lot if lower back pain. At first they told me it was my body trying to learn a new way to function and it would go away. When it didn't and got worse, they did a ct scan and found evidence of a leak (air bubbles and a pocket similar to what you described). I was admitted to the hospital and got a PIC. Couldn't have anything PO for about 4 weeks and was fed and hydrated through the PIC. It sucked! They hoped the leak would heal... [ more ]
Kelsie Jen, we saw Dr. Remzi. I sent you a PM too. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Dehydration anyone?
Mark N I am always dehydrated so I drink juice, fake juice, diet soda, non fat milk and drink all the time. It has not hurt my health 7 years since takedown and all has always been well at check ups. What if you ate some salty stuff like spicy potato chips? During football practice in Arizona as a kid they made us eat salt tablets to coach the body to hold more H20? I like celry stalks, non fattening and I sprinkle salt on the celry , tastes better and helps me drin more. I live in hot south... [ more ]
Former Member Bless you. [ more ]
Sonja6 Im also dehydrated all the time. Sometimes I get up in the middle of the night and drink everything i can get my hands on. This is so wierd but i havent been able to drink milk in soooo long. But I crave it sooo bad. I would wake up with the fridge open, drinking milk strait from the jug! Needless to say the next day was a bad one, every time! [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Colds and J-Pouch
Former Member ❤️
Connie Yep, any illness creates pouch havoc (said the woman who does the laundry.) Last January a bad virus even triggered pouchitis. [ more ]
Spooky Yes, this is pretty much the norm for me too. Almost any time I get a virus such as a cold, my pouch gets a little more irritable; i.e increased frequency, sometimes more watery stools and butt burn, etc. It usually settles down as I recover from the cold. Just proof of how easy it is to upset the apple cart. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Gallstones
Jan Dollar You can have obstructive symptoms form gallbladder issues, but they are upper GI, not anywhere near your pouch. Tailbone pain would be related to pouch issues, arthritis, and/or spinal issues. My severe tailbone pain was related to a presacral abscess. It had been tender ever since the delivery of my nearly 10 pound son, but nothing like the red hot poker feeling of the presacral abscess. Jan [ more ]
skn69 Hi Katey, Nausea yes, tailbone pain? I don't know...I had chronic galbladder problems (one very large stone blocking the outlet)...my symptoms were pain in my back under my right scapula (should blade), pain in the front under my right ribcage near my liver, occasional shortness of breath or a feeling of not being able to breath deeply on the right side, indigestion or burping and a very bad reaction to eating fatty foods, feeling like I was going to have a heart attack when I was having a... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
IV Vanco
Jan Dollar It may, but at least C. diff shouldn't run amok. My thinking was that it would probably wipe out the VSL along with everything else, so why just throw it away? If you feel like you should be proactive, how about S. boulardii (probiotic yeast used for C. diff control). It is often given with Flagyl or Vancomycin. Plus, it is cheap! Jan [ more ]
Connie No, we're dealing with orthopods and ID docs, so I dont think GI is in their job description. After sounds good. Maybe it won't have any noticeable GI effect, anyway? [ more ]
Jan Dollar I would wait until after the vanco is completed. It may well just trash whatever you give. I'd go with something cheap in the meantime, if you feel you need to, like maybe Culturelle or whatever...Did his docs have any recommendations in that regard? Glad Tom is getting home at least! Jan [ more ]
See all 3 replies...

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William J. Johnson
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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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