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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 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 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 ]
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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 ]
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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 ]
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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 ]
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J-Pouch ForumsGeneral Discussion
How do you know when your pouch is filling up?
BebeksporBebekspor
nocolon-2000 You will learn the difference between filling and full. If are active and busy, your brain doesn't seem to obsess over it as much as when you are idle. When I am at work I go maybe once or twice during the day. When I am home, I feel like I am constantly going. Sometimes I can feel it filling. Other times I can hear things gurgling into place. It's weird. [ more ]
Bebekspor It's only been two months, I know it's early still. Katie [ more ]
mgmt10 How long ago was your takedown? If it's been recently, what you are describing is normal early on. Basically I know I have to empty when I get a feeling of pressure building up. That feeling only occurs when the pouch is full and needs emptying. [ more ]
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J-Pouch ForumsGeneral Discussion
Risks of J Pouch Surgery
S Shainy
TE Marie Thanks for clearing that up ladies! [ more ]
Jan Dollar Yes, morbidity is just a general term meaning illness or disease. It does not mean or imply failure. Morbidity can be a temporary state and complications after this surgery are fairly common. Also, you do not add all those up, as morbidity is not linear like that. There are overlaps and often, the same people get most of the complications. So, the morbidity rate is 10% of the group overall, not each complication added together. Jan [ more ]
Shainy I think major morbidity is a complication with the surgery, but not necessarily a pouch failure? [ more ]
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J-Pouch ForumsGeneral Discussion
chronic pressure
N nuggy
Scott F If you're fine when you're on antibiotics, you may just have antibiotic-dependent pouchitis. This isn't rare, and it isn't a reason to return to an ileostomy. It could be a reason to simply stay on antibiotics all the time. As Jan says, some gastroenterologists prefer to rotate them (change the antibiotic every few weeks). The surgeon doesn't sound like the right person to help you sort this out. [ more ]
Jan Dollar Gee, after all this time, how about seeing a gastroenterologist instead of a surgeon? It would seem that your surgeon is not really thinking about long term maintenance. However, it is possible that taking Cipro in cycles might be the best option for you, since continuous use can lead to bacterial resistance or even worse infections. A GI may be able to determine if you have other things going on besides pouchitis, like IPS, bacterial overgrowth, cuffitis, etc. Did you read the article in... [ more ]
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J-Pouch ForumsGeneral Discussion
18 days after takedown
J Jamesforpm
Pluot Yep sorry -- everyone's a bit different, at 18 days post-op I was only eating small amounts of cooked veggies. I meant that increasing the quantity and eventually adding raw can loosen your stool. The guideline I followed was not to add raw veggies or anything high in fiber (e.g. cooked corn) until six weeks after surgery. Thanks! Yes I think I've kicked the C. diff, knock wood. Somehow I actually stayed pretty active and didn't miss out on too much while I was suffering, but doing much... [ more ]
Jamesforpm Plout, are you suggesting that I shouldn't be eating any fruits or vegetables at this time or that I shouldn't eat uncooked fruits and vegetables? I've been following the diet instructions at j-pouch.org/diet but my reading of those instructions is to avoid uncooked. By the way, I like your blog. Did you get rid of the c diff (I had c diff before surgery and managed to kill it with two weeks of antibiotics)? Are you back to living life? [ more ]
Pluot Not, not for long. Maybe five seconds and then I sit back down. Usually that dislodges a gas bubble and that forces out any remaining stool from the pouch. There are ways to loosen your stool. Try drinking more fluids, especially with meals, and try drinking hot fluids like tea or soup. Eventually fruits and vegetables will loosen your output as well, but it's a little too soon post-op to add fiber yet. [ more ]
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J-Pouch ForumsGeneral Discussion
New J-Poucher
A AndeeLWesterz
dgtracy Andee youll find that its different from person to person. when i had my takedown i thought my days of eating 2 cheesy gordita crunches with no lettuce add sour creem, extra baja sauce was over...but the day i walked into that taco bell and loudly exclaimed ill take two of my usual was one of the happiest days since takedown.... in all seriousness though i am able to eat more variety NOW then i could BEFORE the surgery. Icing on a cake about killed my stomach before but now i can eat it no... [ more ]
mgmt10 Well it's only been a week so you need to have some patience. Your frequency will go down over the coming weeks. And you will get to know when you can become more adventurous with foods. Take it easy with the food right now. If you're feeling better in a month give some of your favorites a try in small quantities to see how it goes. There are no food restrictions but give yourself a few weeks to heal up a bit and stick to easy to digest foods. Three weeks after takedown I was eating whatever... [ more ]
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J-Pouch ForumsGeneral Discussion
Do foods high in magnesium cause loose bowels
T tulsamom
TE Marie My surgeon warned me about magnesium supplements saying "Phillips of Magnesium", which is an OTC medication to help with constipation. I don't know if taking my supplements have caused me any problems as I've continued to take them and my blood work keeps saying my mag levels are normal. I take 2 Loperamides, prescription Imodium, for IPS daily. It's important to keep my magnesium levels normal, for my fibromyalgia, as it supports our muscles. [ more ]
tulsamom Very good to know. Thanks! [ more ]
kenneth29 epsom salt foot soaks about 3 times a week can help get magnesium levels up, and ive never had loose stools with those on nights i did them i would usually sleep through the night [ more ]
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J-Pouch ForumsGeneral Discussion
Was doing GREAT! then had gas pains..5 days later still not back to it..????
dgtracydgtracy
Jan Dollar Yes, this sounds like obstructive symptoms to me as well. Sure, you can have gas pains when you are obstructed, but the gas was the result of the obstruction. I really doubt that a Tylenol would be the cause of any of this, empty stomach or not. Probably was just coincidence. Most of the time, obstructions have little to nothing to do with what you eat. While half a corn dog and a king size Milky Way are not the greatest food choices, healthwise, they are as digestible as the next thing. If... [ more ]
dgtracy Other than cipro and flagyl i havent taken immodium or anything so i will add some juice to the mix. Both times this happened i tried to recall if i ate anything that could have caused it. first time maybe it was a tylenol pill? second time all i had to eat before any of it started was 1 and half of corn dog and i king size milky way bar. [ more ]
Pluot It doesn't sound like gas pains were the cause, my best guess is that you're been having minor obstructions that are resolving on their own. When you're blocked the gas builds up and causes pain. If you're having "skinny stool" that sounds like your stool is QUITE formed for a j-pouch as well, that might not be ideal. Can you try adding more fluids to your diet and perhaps fewer thickeners or even adding something like juice and see if that helps? Cipro and Flagyl together can be... [ more ]
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J-Pouch ForumsGeneral Discussion
Most Accurate Diagnosis of Fistula Tract?
D DeathStalker
DeathStalker Surgeon doesn't want to do the MRI. Said he could better evaluate situation with office visit. Though I had it twice excised last week, I can still feel a swollen bead like area under the skin. At this point, I'd put money down on it being a fistula. Now I've got to wait an entire week before my follow up! Not liking this at all. [ more ]
DeathStalker I'm still convinced that these abscess are directly related to a bacterial infection of the area. When one flares up, I seem to have others also flare up. As soon as I excise one and get on antibiotics, the swelling near the others goes away too. [ more ]
lovedby2 Mine was found finally after a year of pain and agony. ..scan after scan...but finally through EUA by a colorectal surgeon. [ more ]
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J-Pouch ForumsGeneral Discussion
sports and pouch
R requidg
requidg thenk u guys for your advices, you've been very helpfull, i'll be contacting you again as soon as i have more questions, love [ more ]
JeffDC 8-12 times a day is normal to me. For a jpoucher to work out a lot, have him drink a lot of fluids before, during and after working out; we can get dehydrated quickly without a large intestine. [ more ]
requidg Yes, he has more movements in the intestins and more frecuence. He was going 8 times a day to the toilette, and this week he started to go like 12 times a day... [ more ]
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J-Pouch ForumsGeneral Discussion
What time do you eat dinner?
BebeksporBebekspor
Pluot Yep, to echo the above, it doesn't really make a difference to me unless I try to go to sleep like *immediately* after eating a full dinner... and I would never want to do that anyway. Eating plant fiber, especially leafy veg, and/or carbonated beverages at dinner are guaranteed to cause an extra nighttime trip, but timing has never seemed to affect me. [ more ]
Bebekspor Yeah, it didn't really make a difference. I was up 4 times still. Patience, patience. Katie [ more ]
mgmt10 It doesn't matter what time I eat (I've experimented) I still will get up once to go. Your j pouch is still pretty new. Your night time trips should keep reducing over time. [ more ]
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J-Pouch ForumsGeneral Discussion
Abscess
T Traveller
lovedby2 I'm about a month out from my last clean out. I'm in pain again! It hurts so bad to go to the bathroom. .. I was off pain killers for the first in a year but now I'm about to go back to my GI and veg for something to help get me through this pain until I can see my specialist. I feel constant pain in my sacrum as it is and then this! Does anyone have to take pain killers everyday. ..I'm trying over the counter Tylenol and ibuprofen and it doesn't even touch the discomfort [ more ]
rachelraven My perianal abscess drained on its own, but they did lance it, too... Developed a fistula, about 50% do, and I've had a draining seton for a year. It is not a cure; it's a palliative treatment for it. The lancing of the abscess pain took about a week. It was a pretty terrible pain. If I could have been a once a day regular pooper, it would have been less painful, but frequent mushy J pouch stools hurt it more. [ more ]
DeathStalker The recovery time for just an abscess is about 1 week depending upon how deep they have to cut in order to drain it. I had one that came to a head on its own and it healed within three days but I've had others that have had to be excised and they've taken longer. However, if you're talking fistula and seton placement, it can take much longer. Lots of sitz baths and pain meds early on. [ more ]
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J-Pouch ForumsGeneral Discussion
Follow up for Jan
L LisaT
Jan Dollar My thoughts are that your doctor is thinking that you are having side effects and that is why he is reducing the dose. However, I personally don't see the logic in it when there are other biologics that are known to be effective, plus they are more cost effective. They are more cost effective, not because they are less expensive. All biologics cost close to the same per month. But, only Remicade requires IV infusion, incurring a great administration cost (not necessarily to you, but to your... [ more ]
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J-Pouch ForumsGeneral Discussion
Blood in BM after takedown
J JW280
heyitsles Hi I just saw your post and thought I would respond. I had sudden bleeding a month or so after my take down. It was actually quite a lot and it lasted over a week. I went to the hospital twice and everything looked good. It stopped on its own. The surgeon said its not uncommon for bleeding to occur, but they really don't know what causes it. It could be just a blood clot around the suture sight came loose and bled. [ more ]
dtmack Not really abnormal at all. Even 2 years out, i still had occasional bleeding. Usually it was from a hemorrhoid or something else. If it is a large amount, like when you were sick, that might need to be checked. But you are still very early in the recovery. I would not be concerned personally. As far as leakage, it will get better. Try doing kegel exercises to help strengthen your control muscles. It will help a great deal Best to you Derek [ more ]
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J-Pouch ForumsGeneral Discussion
New here....
C ColoradoCarrie
aureliasc I agree that your diet may be the culprit. I found that if I eat brownies, cake, etc I will have the worst acidy diarrhea ever!!! Chocolate candy doesn't seem to do it....it appears to possibly be the combination of flour and sugar. Also, try and stay away from spicey foods for now (like mexican). Other foods seem to cause BAD ODORS (like simmered onions, cabbage, etc). I take 2 Lomotil every morning. If I ever forget to take them, I know it by 2:00 in the afternoon. So if you are not on any... [ more ]
Dog I'd recommend you go buy something from the sponsors on this page. I've personally tried and keep calmoseptine in my bathroom. I'm not sure if it will work to coat fissures, maybe someone can speak to that. I'm thinking it will be like chapstick in the winter, but for your butt. I don't get having diarrhea *and* having to press on your stomach to get things going. If I have a liquid stool, I don't have to help things along at all. Even when I have too firm stool, I don't press on my stomach. [ more ]
Scott F I would certainly try eliminating carbohydrates for a while if none of the medical basics were working adequately. I haven't personally tackled it, but that's because I haven't needed to. Some folks have reported significant improvement from this dietary change. If I were going to tackle it, I'd do so "elimination style." First I'd eliminate all the carbs for a while - at least a few weeks. If that made things better, I'd add back the carbs permitted on the low FODMAP diet (e.g. rice), and... [ more ]
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J-Pouch ForumsGeneral Discussion
Sister-in-law diagnosised with Fap
skn69skn69
aureliasc So glad they have YOU to help them stay on top of things. Remember FAP is hereditary so others in the family may need to have the genetic test to see if they also carry the gene. I have FAP and had polyps throughout the colon and rectum so everything was removed. I have now out lived my father and 6 of his siblings who all died with colon cancer. [ more ]
skn69 Thanks V, She had her surgery on the 4th, all went well and they resected enough without actually needing to place a temp ileo. Recovery was fine until she developed a serious bleed under the midline and had to go back to O.R....they fixed it and she is still in hospital 11 days later...Doing better but still very fragile. The surgeon is optimistic but has not spoken about anything like chemeo or other treatments. Will keep my fingers crossed. Now I am dealing with a student with fap who is... [ more ]
vanessavy I had rectal cancer. this is why I could not have a jpouch. Removing the whole rectum they could "possibly" hand sew the intestine/pouch to the remaining skin but in women we sometimes have less to work with so they wouldn't have known until they went in to do the final part of the surgery. Leaving me open to possibly needing another surgery if I was left with a bag then wanted a BCIR or Kpouch. I was also told that without the rectum there I would possibly suffer with more accidents and... [ more ]
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J-Pouch ForumsGeneral Discussion
Magnesium Citrate
Mema 1Mema 1
Mema 1 Thanks, so much, clz81 - that seems to be what everyone is saying. I think it's because they really want a very clean picture of what they're looking for, and even though I'm dreading tonight very much, I have to do what they're asking me to do. Tomorrow morning I have to do the same thing. As everyone says, the prep is the worst thing, although, I'm not looking forward to the procedure either. Just hope that they don't use the same tube for the endoscopy that I'll be having as well (did I... [ more ]
clz81 Mema, sorry you had to deal with this prep (like you said, you imagine you never have to again!). It still seems like way overkill...hope you felt ok after it. I've had every kind of scope/endoscopy done possible with my digestive tract this year, and other than a clear diet, fasting the night before, and maybe an enema in the morning, that was all I ever had to do. Hope you don't have to do it ever again! [ more ]
Bergie77 Allison did you ever find out the reason you were having pressure in rectum while driving? [ more ]
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J-Pouch ForumsGeneral Discussion
Pain at scar site?
M mads101
JeffDC I have had some intestinal kinks there, and one obstruction. Either category really gets your attention. [ more ]
Dog I had that after doing ab exercises. Sometimes, random and sharp pain that lasted for a second or less. Just the other night, one of my little scars felt horrible when I moved, so I just quit moving. I can't tell from your surgery dates, but if you're a teenager, any new sports? Maybe a hernia or maybe just sore muscles? Next time you're at your Doctor, I'd ask about it. [ more ]
GinLyn Same here. Didn't happen all the time but enough to cause significant discomfort. Once the adhesion was cut, the problem ceased. Gin [ more ]
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J-Pouch ForumsGeneral Discussion
Sushi OooOh Yeah!!
P phonix2g
Pluot I would start with basic maki rolls that only have one or two ingredients each, so that you can taste things individually and figure out what you like. Tuna, salmon, and yellowtail are mild fishes that most people enjoy. Tamago is a special egg sushi (no fish) that is really tasty as well. Most sushi places have a variety plate or a 'dinner special' where you can get a little bit of everything -- then you'll know for next time what you like best [ more ]
carlin I've never tried sushi because 1. I got my pouch before learning about the awesomeness of sushi and 2. I was scared off of sushi because of my pouch. After several years with the pouch, I feel like I have a really good handle on what I can handle and after reading the positive reports in this forum, I am ready for sushi and I can't wait! So, this is not a pouch related question, but a general question for the sushi lovers: where does a sushi beginner start? What are good things to order (not... [ more ]
phonix2g Ha ha I told you I love Sushi. It definitely kept me bound up for a night and half a day. [ more ]
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J-Pouch ForumsGeneral Discussion
Sore swollen Bottom
C CaryO
Jan Dollar Perianal abscess or hemorrhoid is my guess. Do you have any fever or other general symptoms? It probably is not a pouch problem, but sometimes perianal abscesses become fistulas and that is a problem. So it is good you are being seen soon. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
anxious and upset :/
S sally85
CeeeeCeeee One more comment! That mucous (pre takedown) is soooooo slippery that, for me, Kegels did nothing! I thought I was doomed to leakage after takedown. Nope, no comparison! [ more ]
CeeeeCeeee Same here! No comparison to after takedown! Why don't "they" tell us this ahead of time!!!! [ more ]
mgmt10 I'll add one more don't worry about it. It in no way means this will happen to you with your j pouch. I think many of us have experienced this same thing. [ more ]
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J-Pouch ForumsGeneral Discussion
But powder
L LizTish22
grandmaof1 I lay in my bed with underwear still on and pull the underwear to the side and aim and shoot. You can put a towel down so you don't cover your bed also. I am grateful my husband will help me also. But this is what works for me. I have also have put some on a maxi pad when I am out in public and this kind of push it up to the rear end. Hope this helps you out [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Surfing possble with ostomy?
BM boy's mom
Nomoremeds Having an ostomy can make things like this difficult. While I'm sure it's "possible" to surf with an ostomy, it is going to make things much less comfortable. That said, if he is sick, he isn't going to be doing/enjoying surfing much anyways. At least with the ostomy he will feel better and be able to pursue an overall more active lifestyle, even if it doesn't include surfing. Unfortunately, sometimes we are forced to pick the better of two less-than-ideal options. [ more ]
Jaypea You can do anything you want to with an ostomy. Climb Mount Everest, scuba dive, body build or just be a couch potato. It will take time to,figure out a system but with perseverance he can do whatever he sets his heart on. [ more ]
mgmt10 I don't think it would fall off with the neoprene stealth belt over it like in that video. Definitely would need that protection. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Remicade
L LisaT
LisaT Thank you Jan. Do you think the symptoms will come back? Worse? No, my doc didn't think my joint/back pain was the result of the Remicade. Am I putting too much on the blood results? It's interesting that my colorectal doc mentioned getting off Remicade when I saw him last month. But he sounded very positive about it. He said let's cut your dose in half. With the caveat that if things go down hill, I will have to go back on a biologic. I appreciate your time. Lisa [ more ]
Jan Dollar What was the reason to reduce the dose? Was there an assumption that your arthritic symptoms are a side effect of the Remicade? I would wonder if you have developed antibodies over time and Remicade is losing effectiveness. If that is the case, halving the dose will certainly show an increase in your symptoms. Maybe time to switch to Humira or Simponi if your symptoms worsen or do not improve. I don't think that it is true that you cannot reduce the dose of Remicade once you are on a higher... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Crohns Diagnosis 17 years after UC/J-pouch surgery
B BethG1983
NancyD. I posted a couple of weeks ago. I've had my j-pouch for 12 yrs. I've been ill on and off for over 6 months. I went to see the surgeon who did my surgeries about ten days ago. Blood test was done to see if I have Chrohn's now. Also had a cat scan. I called the Dr. a few days ago to get the results and still haven't heard back. I'm anxious! I've been on Cipro and feel better, but go off of it this week-end and I'm afraid I'll get sick again-that's been the pattern. [ more ]
dawn58 When someone has UC and then Crohns, it doesn't mean that the person was misdiagnosed. At one time it presented itself as UC and now it presents as Crohns. [ more ]
MarkGregory I will never forget this quote from a colo-rectal surgeon: "nothing brings on Chrohns disease like a j-pouch will." [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Trouble with pain
S samlc25
samlc25 I'm over my withdrawal period. I just experience a lot of pain and discomfort and I would love a pain pill. I wish there was a way to still get the pain pills and it be managed better by me. This is a tough situation since I developed the dependency. I've had tramadol in the past and that doesn't help me. Should I talk with my dr about prescribing pain meds to me again at maybe around 10-15 pills a month? That will force me not to abuse. [ more ]
Dog samlc25, I'd start by talking to your Doctor. Maybe s/he can tell you stopping cold turkey was a mistake and help you transition to something else and control your intake better. If not, maybe your Doctor will recommend a pain specialist who will be able to help you find a way to control your pain while getting off of whatever you used to have available. [ more ]
CeeeeCeeee I use Tramadol when I need to. As I mentioned, it doesn't seem to get rid of the pain. It takes the edge off for me. After using it one or two days I am good to go.....without it for quite some time. For whatever reason, I never feel drowsy or out of it in any way when taking it. I have a feeling it may or may not help relieve all pain or all people. I use it for sciatica and it sure beats having epidurals...for me, anyway! [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
Green Coffee
sherlocksherlock
vanessavy I drink a lot of coffee a day. I have been on the pill before and tried to revisit it recently since I too am over weight and the first time I tried it, my pouch functioned really well! I tried a different brand and had a lot of gas and issues that were just leaving me bed ridden and miserable. I had to back track what I was doing differently and thought it must be the pill so cut it out then got back on track. [ more ]
Jan Dollar I would be dubious that it has much of an effect long term. People are always looking for some easy way to influence weight loss. Whatever effect it has, I would suspect that it is minor. That said, Dr. Oz did have blinded studies done and there was more weight loss than with placebo, so I guess it works to some extent. http://www.doctoroz.com/videos...-coffee-bean-project As to tolerance, if you can tolerate coffee, you probably can tolerate this supplement. However, if you are taking it in... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Vitamin D and Magnesium Questions
MNpoucherMNpoucher
vanessavy I have been through the ringer with tests. Seen Nuero muscular for leg, feet and hand cramps that have put me in the ER. My vitamin D is very low. My final results after tests lately are magnesium that are causing my issues. Thing is on the tests my magnesium shows just fine but according to Neuro I am not absorbing enough so I now have to go back to GI. My memory is horrible. My husband gets annoyed when I make him repeat directions 3 times in a row. Here are a few links you might find... [ more ]
dgloria5 Memory loss and confusion is sometimes due to low thyroid. Dr's don't always test for that, I happen to get mine tested because I went into the ER not feeling mentally good and it was that my thyroid was to low. [ more ]
AllyKat Magnesium calate. I would see a neurologist too. And after that a Functional medicine doctor to get your systems back in check. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Need tips for sleeping through the night!
BebeksporBebekspor
JW280 My takedown was February 13th. Things have gotten much "better" than first after takedown. But I'm still not completely happy. I'm up 4-5 times a night as well, every 1.5 to 2 hours like clockwork. Then my alarm goes off at 5:15 am for work. Makes for some tired mornings. Even during the day I can go 1.5 to 3 hours between BM's. I've tried to work on holding it to "stretch the pouch" or make my muscles stronger but no matter how hard I try to hold it back a little bit will leak out then I... [ more ]
Bebekspor I'm not expecting this to happen again soon, but I only woke up at 3am and 3:50am last night! [ more ]
Bebekspor I'm hoping it's just a matter of time and that this won't last forever! [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
New teen Jpoucher
T TeensMom
TeensMom Thank you all for taking your time to write. [ more ]
Jan Dollar The cuffitis can cause anemia, even if he is not bleeding. The chronic inflammatory state supresses the bone barrow. It is called "anemia of chronic disease." If you add to that poor iron absorption, it can be a real mess. Jan [ more ]
mgmt10 I wanted to comment on the anemia but first I just wanted to say I hope you get to the bottom of the pain issue. I don't have any experience with that. I've been anemic since my takedown surgery 3.5 years ago. I too go for iron infusions. I just don't absorb the iron or hold onto it. I don't have any bleeding so it's just really frustrating. I have asked why to my surgeon PCP, GI, and hematologist and not one of them can offer me any answers. They say it's not an absorption issue but that's... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Amal stenosis w stricture ? !
J jeane
rachelraven My surgeon will only do them under anesthesia. Says it's kinder for both of us. [ more ]
jeane Thank you Rachel. It concerns me that I have to modify my diet based on this issue as I love fruits and vegetables. Do you have them in the office or under anesthesia? My surgeon is non-par so I have been going to my GI every 6 months and have them under anesthesia. Glad to hear you are doing better. [ more ]
rachelraven I've had dilations of the anal anastomoses for narrowing/stricture. Had a few last year, and doing ok, but see my CRS in 2 weeks, and I know he'll want to do another. He ALWAYS wants to, to prevent problems now. But honestly, I've been ok. I also now completely avoid all overly fibrous foods that don't break down, and it helps a LOT on evacuation. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
best/worst foods
OZOZ
rachelraven I used to eat ANYTHING without issue, but these days, avoid nuts, seeds, mushrooms, corn, bamboo shoots, raw cabbage in bulk... I tend to be a bit narrow at the anal anastomoses site, and these are blocking foods. I'm lactose intolerant, and use almond milk. Whey protein kills me. I can eat cheese and yogurt, though. Can't do milk in bulk or ice cream without cramps. I can't eat raw apples, or stone fruits, they cause cramps, and I avoid beans and soy in bulk (gas, gas, GAS!). My best fruits... [ more ]
Pluot Most of the above are fine for me... This is a subject that is VERY subjective though. For example, I have no problems eating spicy or acidic foods, many people can't tolerate them. Carrots, winter squash, and potatoes are go-to veggies for me. They don't increase my frequency at all (unlike other veggies). Summer squash (like zucchini) increases my frequency a lot. Coconut milk wrecks me. Incredible amounts of gas. Most other foods don't cause noticeable changes for me. Honeydew melon and... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
supplies needed for home care after takedown
K kdmos75
grandmaof1 I hate Calmoseptine. It burned my butt so bad. I have two of them, and one not even opened. I use zinc oxide. I get it at Target in the baby department the UP & UP brand. Make sure you get the 40% zinc. I also love dubicaine. I had to order it through a website I think it was drugstore.com. I used both at the same time. Truly amazing. Dubicaine has pain medicine in it to help you out. Not much but just right. Good Luck and keep us posted. You will require a lot of resting. Take that time... [ more ]
Rocket Calmoseptine caused my butt to burn so my GI recommended Desitin which does not cause me any problems. Sometimes I just us Vaseline too. The toilet paper that Pluot mentioned was right on. It must be soft. After my take down, I had the misfortuante problem having further prolems so my stay in the hospital was a lot longer and the toilet paper in the hospital was like using Sand Paper. Good Luck Rocket [ more ]
mgmt10 I think Deathstalker covered it. (Hopefully you wont need those pads for your underwear!) I can't live without my Calmoseptine. It's very soothing and stops any itching instantly. Some people don't like it but I recommend giving it a try. But anything with zinc oxide in it will do. Good luck! [ more ]
See all 6 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

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

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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).

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