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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 ForumsHelp! Need advice now!
severe constipation: at a loss :(
J jbee
AllyKat Some sort of obstruction. [ more ]
clz81 It sounds like to me that you are really backed up at the pouch, which is what your x-rays showed as well. So it is constipation, but for us pouchers, it's like an obstruction, except at the end of the digestive tract. Until this is resolved, I would stick to lot of fluids and juices. This happened to me after my bowel obstruction as the antibiotics thickened up my stool so much. I pushed a lot of grape juice and ate light meals until things got back to a regular consistency. [ more ]
Jan Dollar A stricture is a narrowing. It would show up on imaging, unless it was at the anus. Anal stricture is a common complication of this surgery. Basically, it is a tightening of the connection between your pouch and anus. Since it is circular, tightening means a smaller opening. If your stool is loose and watery, you may not notice it. But, if it gets too solid or you have too much undigestible fiber, you get blocked. Sometimes motility of a section of intestine just quits, becomes paralyzed. It... [ 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 ForumsOstomy & Skin
Advice needed
L Lou_Lou
aka KNKLHEAD I had ithcy skin around the stoma and it was red (probably because I scratched it!) and I am pretty confident it was the soap I was using around the stoma and not rinsing properly. I us a non-irritating soap and really try to ensure I rinse very completely and dry before putting on the wafer. Hope it helps! [ more ]
Lou_Lou Hi I am not too sure which products she is using to be honest, but I can find out. She has had these issues the whole time so it's not just a new thing. Pretty sure she has mentioned redness, what would be symptoms of yeast? [ more ]
PoucherInTO Hi Lou_Lou Itchy skin eh? OK, what products is your mom currently using? Adhesive remover, barrier spray, etc. Has she changed anything - soap, lotions, detergents - even if these things don't get under the flange, I thought it might be worth asking. Is she sweating more under her flange? Is it red or bumpy? Any chance this is yeast? [ 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 ForumsK-Pouch Korner
Questions about K-Pouch
S smp
BillV I am sorry to hear about the medical problems you are having. The presence of Crohn’s rules out a K pouch or BCIR for many, but not for everyone with it. A qualified surgeon would need to make that determination. As regards your key question, it is not necessary to have a rectum in order to get a K pouch or BCIR. Many people who have had these procedures converted from an end ileostomy to a K pouch or BCIR for the kind of problems you are experiencing or for other quality of life issues. I... [ 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 ForumsPouchitis
Butt stomach gripping pain
GT Good to be healthy
Good to be healthy Hi Yes the pain radiates up towards my stomach and will then go away and come back again until the pouch is emptied. Last time I was on the antibiotics it went away during the antibiotics course and then returned about a week later but this time I was able to stop it. I figured out that the pain started around 2-3:30 pm during my work day but I had no pain in the morning. In the morning prior to work I take two imodiums at 7AM. When the pain returned after the antibiotics were done I took... [ more ]
Bergie77 Good to be healthy: im having same exact symptoms as you. My pain goes away after one 500mg dose of Cipro. Have you found out the cause of pain? Ive been scoped many times and no pouchitis. Does your urgency radiate like an electricity shock? You can hold it in but pain comes in waves until you empty bowel for relief? [ more ]
grandmaof1 I just had a scope done in October and a MRI in December plus seen my surgeon and she did a rectal and said inflammation showed up on the MRI right inside my anus. So I am wondering if I have UC right there again. What are you thoughts. I have no fever. I drink only "smart water" for what it has in it for me. No pop. Just water. The pain is excruciating. I have always had some pain and pressure there since I had my take down. But lately way worse.... No pouchitis on my MRI or scope. So I am... [ 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 ForumsHelp! Need advice now!
Pouch trouble. I don't know what going on. Please help.
MysticobraMysticobra
clouseau I have had that happen sometimes also, mine is like a slime coming out and if often green, is yours like that? I get it even when I on the cipro. Try changing your diet and eliminating cards and sugar. The antibiotics helped me at first but I think are less effective now, I've been on them 2+ years. Let us know how it is going with the new diet. It has helped others. [ more ]
Mysticobra Thank you. I used some Miralax. took awhile but it worked. Gonna just use one antibiotic and that should be enough. Again thank you everyone for the advice. I will most likely need it in the future. Richard. [ more ]
rachelraven When things get a little too thick for me, the only thing I can tolerate is Milk of Magnesia, because it's a non-stimulant. Also, I only need about 10 mls of it, I don't need a full dose. I go about 4-6 hours later, and it gets me on track. But I agree, try juices first. Purple grape juice sometimes works for me. Prune is way too cramping. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Oh the pain!
S SKadett
Bergie77 SKADETT where do you live in Canada? Was reading your posts and having same exact symptoms as you. Would be nice to discuss with you at your convenience. Thanks [ more ]
Bergie77 Skadett did you finally figure out where the pain was coming from? Im having the same kind of pains. Did they test you for a structural problem? [ more ]
TE Marie Have you seen a GI since surgery? I'm asking as my surgeon totally missed that I had a c-diff infection when he did his quickie scope and took no biopsies. He gave me a prescription for 14 days of Anucort suppositories because he saw a little bleeding at my cuff. I told him I'd had a toilet full of just blood a few days before. Long story short, 2 GI's, flexable scopes and biopsies I had a c-diff infection along with my acute and chronic cuffitis. Plus I have IPS. IMHO GI's are better than... [ 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 ]
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J-Pouch ForumsHelp! Need advice now!
Bladder pain
keddy55keddy55
skn69 Yup, usually it was due to bacteria from cross contaminiation or from the antibiotics for the pouchitis. Lots of fluids, cranberry juice, green tea and a mild anti-inflamatory (if you are allowed) to ease the discomfort. Sharon [ more ]
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J-Pouch ForumsHelp! Need advice now!
lots of vomiting and diarrhea. when to go to er
armywifearmywife
skn69 I am so sorry that you are feeling so bad. My rule of thumb? It takes me about 6hrs to finally admit that something is very wrong and post on this site asking for help. Another 6 waiting for answers. By then if it isn't resolved it is time to go to ER. Hope that you are feeling better by now and that this has passed. Sharon [ more ]
Jan Dollar It could just be norovirus, which is very virulent. You go to the ER if you cannot keep plain fluids down and you are feeling weak and shaky. Jan [ more ]
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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 ]
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J-Pouch ForumsHelp! Need advice now!
Obstruction
P phonix2g
ladyjane I also have bowel obstructions that send me to the ER. I've had 3 in the last two months! My last CT scan showed lots of adhesions which I understand can attach the intestines to the bowel wall. Maybe this is the pain you are feeling. [ more ]
Ljz I just want to add, though by now I hope you're feeling better, but following a blockage, there is often continued pain. My doctor explained that the continual motion of your intestines keeps on pushing and pounding the tissue during blockage. That can make it swell, and feel bruised. I found it lasted several days with long, severe blockage, and just one day with a shorter (6-10 hour) blockage. Not sure that is the pain you're having, but blockages do cause residual pain. [ more ]
GinLyn Sounds like at least a partial obstruction still, or some damage. Time to get it checked out. Gin [ more ]
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J-Pouch ForumsHelp! Need advice now!
Loud Gas
T tiffanygoad
Lesandiego Picture your pouch like a "water balloon".... if you lay on your side, the stool sinks to the bottom and gas rises. Generally about 99 percent of the timer I can release gas without stool if I lay on my left or right side. [ more ]
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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 ]
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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 ]
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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 ]
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J-Pouch ForumsWomen's Health & Pregnancy
Vaginal Fistula?
SB S Brick
n/a Hi Stacy, I can't offer insight, but can offer sympathies - I have a PV fistula (complex) and a seton and do worry about having the current fistula branch off. Can I ask who you see in Columbus? I've not had much luck in the area, so have moved my doctors up to Cleveland. Best of luck. [ more ]
hart155 I had many rectal/vaginal fistulas keep cropping up. The repairs with mesh failed and eventually the only repair that worked was a gracilis muscle graft from my leg and having my pouch removed. I hope you find a repair that works before you need something as extreme as me but sometimes the fistulas are your body's way of attacking now that your colon is gone and they won't quit until your rectum is gone too! [ more ]
GinLyn No, sorry, I've never had a seton or external problems with my fistula; just infections and internal pain. You might want to post this in the general discussion to get more hits. Gin [ more ]
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J-Pouch ForumsK-Pouch Korner
Questions..
AB Arlene B66
DG78 My naturopath had me take it when I felt like I was getting pouchitis. I buy Mycostat Complex Caps by Professional Formulas from the PureFormulas.com website. Their website says 'Nutritional Mycotoxin Formula - Mycostat Capsules are specially designed to assist the bowel control Intestinal yeast and Fungal overgrowth'. [ more ]
vanessavy Never heard of it. What is the main purpose on taking it? [ more ]
DG78 Sorry, I haven't been checking the site for awhile and just saw your message. I start with 3 capsules after meals twice a day, and then after a week cut back to 2 caps twice a day for 3 more weeks. Then 1 cap twice a day for another month or two. (My naturopath does things very cautiously). In the beginning the Mycostat would cause me to burp and had an odd smell, but either the burping went away or I got used to the smell, because it didn't seem so bad after awhile. [ more ]
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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 ]
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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 ]
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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 ]
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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 ]
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J-Pouch ForumsHelp! Need advice now!
ADHESIONS
ladyjaneladyjane
AllyKat Yes I had it 4 years ago. Still get some minor blockages here and there but nothing like before I had it done. [ more ]
Megals I had it done about 8 years ago. They were able to do everything laparoscopically (this was before my j-pouch was created though) hopefully they'll be able to do it this way for you. The recovery time was very minimal, though I did has some discomfort for about a week after. Best of luck to you and I hope it helps! [ more ]
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