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J-Pouch ForumsGeneral Discussion
Learned today I have a stricture. But should I care?
K Kia
Jan Dollar I suppose that stricture could be causing more problems than you realize. If it is tight enough, it could be causing retention of stool, the cuffitis, and even pouchitis. These can contribute to your incontinence. So, if you get that stricture dilated, things can improve in general. It won't undo the birth trauma issues, but every little bit can help you manage. Fingers crossed that this is an issue for you and that it can be resolved. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Tricare Insurance
Akk3769Akk3769
hfc Check with your Tricare benefits advisor. With recent congressional actions on deficits (or lack or action), tricare has gotten quite difficult with authorizing followup with specialists out side of the military system or their preferred providers. You need to research this before assuming Tricare will pay for CCF specialists. Check with your CCF specialist. They should be able to help you [ more ]
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J-Pouch ForumsGeneral Discussion
Lymphoma
skn69skn69
skn69 Thanks Clouseu...I will look into it...am still trying to straiten out the dizziness that I am suffering from and have just gotten my health insurance back...one thing at a time in my life... Sharon ps...dizziness is in no way related to it I hope! [ more ]
clouseau Sorry I spelled the web site wrong, www.lymphomasurvival.com [ more ]
clouseau Sharon, I have spent over 150 hours on research on follicular lymphoma and am part of a worldwide site that specializes in it. I have seen some of the top follicular MD's in the country so please let me know if I can help at all. The web site which I spent time on is similar to this one and is www.lyphomasurvival.com and membership is $35, best deal in town, I have followed almost all the primary persons recommendations and diet espectially which is crucial. It is the primary worldwide site... [ more ]
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J-Pouch ForumsGeneral Discussion
Cuff spasming
M magsroo
magsroo Thanks Jan. I had already picked up the Nitro Bid before I read your comment. I decided to give it a try and boy do I agree with everyone. It burned like crazy! It helped that others had mentioned that it burned for 5 minutes and then stopped because that's exactly what it did. I also was very lightheaded and found that I need to lay down immediately after. But, when I went to have a bowel movement a few hours later, it was the first time in years that I wasn't in pain afterwards. I was so... [ more ]
Jan Dollar Nitroglycerine (NTG) is pretty "old school" because of the terrible headaches it causes. Most docs prescribe nifedipine now. Same action (increasing local blood flow), but less likely to cause headaches, and if it does, they are generally less severe. The pain and spasms are due to the fissures, which are in the anal canal, not the rectal cuff. Oral pain meds are pretty much of no use in this case. If you can get them, some people get good relief from B&O suppositories (belladonna and... [ more ]
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J-Pouch ForumsGeneral Discussion
Best stuff in Cleveland
N NJK
liz11 considering I have gold member elite status with all of my frequent visit points to CC...!!!!!! here's a few: "Carnegie" for breakfast and lunch. on carnegie avenue downtown right near all the interstates. Just before the Hilton garden inn. Healthy fresh cooked food at half price of au bon pain. great place for stopping after an EUA or outpatient procedure. Great omelletes, fresh salmon sandwiches, and other choices that are easy on the gut. They don't do dinner. There's an italian area... [ more ]
n/a We usually hit Cedarland up: http://www.viewmenu.com/cedarl...nt-3/menu?ref=google . Very busy at lunch, but not-so at dinner. It's easy walking distance, near the Cleveland Clinic campus. [ more ]
LionsPride If your pouch is in good shape do yourself a favor and find one of these. The one in Cleveland Heights isn't that far from CC main campus. http://meltbarandgrilled.com/ The westside market is also amazing if you're a foodie and have access to a kitchen, but it's on the other side of the city. [ more ]
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J-Pouch ForumsGeneral Discussion
Vit B 12
AllyKatAllyKat
MicheleR Just recently I had my B12 level checked and was found to have a level of 131. Which is quite low, so we are now doing injections and I am supplementing with B12 dots, 500mcgs. Along this line, due to my low iron stores and now low B12, I just had a celiac panel drawn on Monday. We'll see if that's been the cause of the malabsorption of vitamins and minerals. [ more ]
Jan Dollar I think it is mcg (micrograms). Very tiny doses. Jan [ more ]
TE Marie In addition to my multi I take 500 mcg (corrected) [ more ]
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J-Pouch ForumsGeneral Discussion
Dr Shen visit, vaginal fistula, strictures and pouchitis
C clouseau
NJK This must be the Fistula finding month for Dr. Shen. He found mine just a few weeks ago after being told I did not have one by my crs at duke. I don't have any idea what will happen next expect I see Remzi next month. I wish other GI and CRS would consider the important work he is going for people with jpouches. It is on thing to make a fortune making them...quite another to help a person live a healthy life with one long term. Keep use posted on your progress. [ more ]
clouseau AKK3769, I had a scope scheduled in the AM and consult in the PM that is the way he usually does it. I had to stay 2 extra days for an MRI to confirm the vaginal fistula and then had an apt the prior day again with him. Liz11, thanks for your note, I will follow everything precisely. n/a, For the strictures he did balloon dilitations. Amazing someone else in OH who has had vaginal fistula's. RLC, My only symptoms were 30+ liquid like BM's a day, some inflammation outside vagina and yeast ... [ more ]
n/a Passing air was a mild symptom in my case, although, looking back, I think I had this very symptom for a quite a while prior to everything coming to a head. Thought it was just a natural "thing" for us women. It is definitely worse, as you mentioned, when the pouch is full and/or when there is more gas in general. I'm rather surprised your surgeon didn't explore it further. Let us know what your GI has to say? [ more ]
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J-Pouch ForumsGeneral Discussion
anal burning and pain
H hcjc6
bootstrap It can definitely be frustrating and depressing to deal with these things for so long. It might seem small to someone else, but when you're dealing with it all day every day for months on end, it gets old quick and can even be debilitating. Find a member on here called "chasingtime" a.k.a. Tom. He has been struggling with depression related to his j-pouch symptoms for quite a while as well... He might have some advice. I know it can take up to a year or more for a j-pouch to get fully... [ more ]
bootstrap I have been cruising topics here on j-pouch.org for the last couple hours and read that there is an antidepressant that can help slow bowel movements, which would in turn help with the butt burn. You might want to look into it if your depression is very bad. The antibiotics can also mess with things. Diarrhea can be a lot worse during or after antibiotic treatment, which of course makes the butt burn worse. It may take a couple weeks for things to return to normal after antibiotics... in the... [ more ]
hcjc6 do u have a problem with depression.i am currently down in the dumps and have been for a while.i try and work to keep my mind busy but it seems to get the best of me.all i think about is the butt burn and tryin to make it stop. [ more ]
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J-Pouch ForumsGeneral Discussion
Nighttime BMs
RM Rowans mom
bootstrap Yay for improvement! I think 3-4 BM's is wonderful and would not use any slowers at that point. I don't think she needs them. The timing of the BM's is due to the speed of her gut. The food she eats during the day just happens to be digested and ready to come out by the time she's asleep. Since she's not eating at night, there's nothing to come out during the day. Mine works very much the same way. Most of my bowel activity is in the wee hours of the morning (midnight to five AM). [ more ]
Rowans mom Well I stopped her intake at 3pm and have been giving her nutritional shakes. Tomorrow I will try to reset and maybe try the smaller meals during the day and a big dinner to see if this helps. Thanks for all the responses. Ill let you know if anything helps. [ more ]
Jan Dollar This may be one of those things that you need to do the opposite of what seems right. It may be that her gut is slower than most of us, so then what she eats throughout the day, is coming through at night. So perhaps she should be eating only small amounts during the day, enough to not be hungry, but have most of her intake late in the day and close to bedtime. If her gut is slow, then that will put her bowel activity in the daytime. That may cause problems at school though, so it may not be... [ more ]
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J-Pouch ForumsGeneral Discussion
Steroids causing horrible acne?!
M Mason&Mara'smom
Reuben Tietz Hey there, So I had this same problem. The doctors put me on a bunch of prescribed medication-- none of it seemed to work. After searching, I discovered that the facial cleaner line "PCA Skin" worked wonders for me! It's a bit pricy, but definitely worth the results. You can order sample sizes first (which are less expensive). Hope this helps. Best of luck mate! [ more ]
Akk3769 Prednisone is both god sent and evil. I can definitely tell a change in my skin when I am on it. I don't know if it's because it made me eat so much but my skin would get oily and I would have a lot of acne. However a couple of months after I stopped using it the acne went away. [ more ]
lovedby2 Befor all my surgeries I was on predisone and had about a month of acne as well. I was put back on pred after my takedown 4 months ago and sure enough the acne came back. Both cleared on its own after I got to a low dosage after tapering off. I'm at 10mg now and no side affects. Try using Duac topical drying cream, ask your dermatologist or Dr. It worked pretty good for me. [ more ]
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J-Pouch ForumsGeneral Discussion
stomach noises
N new2thisstuff
bootstrap I have just noticed increased tummy noises the last few days... my guts are super loud recently! I used to have crazy amounts of belching with any food or drink. I discovered it was related to my acid reflux, and once I got that treated, the belching decreased significantly. [ more ]
MNpoucher I have rumbling often too. Most of the time it is painful and everyone just thinks my stomach is growling and I should eat. Usually it is happening because I should go to the bathroom though. It's kind of embarrassing especially when dating :/ [ more ]
Scott F The burping may have nothing to do with the pouch per se. If your diet or eating habits have changed I'd imagine that to be the more likely cause. For example, eating faster (e.g. If you no longer dread it) would lead to swallowing more air. I'm sure there are other possibilities. [ more ]
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J-Pouch ForumsGeneral Discussion
Gas>>>>>>>>
S samlc25
bootstrap -> Gas-x (symethicone) tablets or strips will help it come out -> Walking and moving around -> Changing positions, knees to chest, etc. -> Heating pad -> Gently rubbing the tummy -> Hot chamomile or peppermint tea -> Laying on left side Next time try eating fewer beans. I can have a few in a burrito and be fine, but if I eat a bunch, I'm screwed. Also try taking a Bean-O dissolving tablet before your meal. [ more ]
Kia If I get to the point of bad cramping, I stop eatting until things start moving again. It usually is a matter of hours, maybe the majority of the day at most. Sometimes I will also just take in water. It seems to help things move along. Ditto on the Gas X, as well. [ more ]
Bodoni You may try chewing some Gas-X tablets. Keep moving around. This can help move the gas along. Beans will cause a lot of gas. [ more ]
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J-Pouch ForumsGeneral Discussion
Do you overheat?
K Kia
bootstrap I overheat very easily, especially when I'm at work. I always have to wear as little/light of clothing as possible to work, which is tricky since I'm a teacher, and even then my students are always complaining to turn down the AC or turn up the heat. I always just figured it was my metabolism since I was up and moving around and they are sitting still. Though I do know a couple other teachers my age that freeze all day and dress in big coats when they teach. However, I sometimes have the... [ more ]
suebear You might want to try low dose Effexor. It's prescribed for women with hot flashes. And there are no side effects. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Questioning J pouch surgery
R RoRo
JillM Admittedly I have a bias because I opted for an ostomy at age 30 due to chronic pouchitis, but if you are living well with the ostomy you might want to keep it. Not telling you what to do - only you can make this choice as jan said, but think about how you will handle it if you have problems - think all manner - recurring pouchitis? Antibiotic dependent pouchitis? Surgical complications? Wound healing issues? How would you handle all of these practically and emotionally? If you had to... [ more ]
kennyboy thankyou i will research more [ more ]
TE Marie There a many symptoms, the first place to start is the 18 trigger points. Please do an internet search and look at those too. It also includes a chronic fatigue feature. It can be mild or worse. There's a continuum of varying degrees. Mine started out not too bad and has gotten worse over the years. You have flares like with IBD. I have been in a horrible flare since my surgeries that I am afraid is never going to get better. The worst thing you can do, if you have it, is not get enough... [ more ]
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J-Pouch ForumsGeneral Discussion
Interesting article linking IBD and thyroid disorders
SpookySpooky
TE Marie Thank you cassiecass [ more ]
cassiecass TE Marie Here is another article bascailly pretains to all T4 products.This article is from Synthroid weblink Hope it helps you .Explains alot RxMed: Pharmaceutical Information - SYNTHROID http://www.rxmed.com/b.main/b2...%20S)/SYNTHROID.html cassiecass [ more ]
TE Marie Thank you very much Looks like it's time to see my endocrinologist again. It's been 4 years. Great suggestion. [ more ]
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J-Pouch ForumsGeneral Discussion
Vegetables
C chapman
CTBarrister Another suggestion would be pureed vegetable soups. They seem to be popular in South America. A few weeks ago I was in New York City, and met a friend for dinner at an Argentinian restaurant in the Chelsea neighborhood of Manhattan. I ordered the soup of the day which was a pureed spinach and cauliflower soup. It was very good. They put just a hint of cream or milk in it so it really wasn't a creamy soup but it had a very nice smooth texture. If you use a juicer or blender you can simply... [ more ]
Kia I've had my pouch over 20 years and I can definitely say things have evolved over time. I can eat any vegetable and eat them regularly. Altough, if I eat excessive amounts in a day if can cause cramping. And I mean really excessive. Normal portion amounts are fine for me. Early on my system didn't tolerate it as well. Sometimes lettuce bits will come through, but it doesn't bother me. As far as explosive and bloating.....That is the norm for me with any foods if I don't cut out all white... [ more ]
chapman Hi Everyone, Thx for your input, it's greatly appreciated. My issue is both cooked and raw green s veggies...lettue, kale...collards...broccoli. They seem to cause bloating, explosive bowel movements and increased frequency. Carrots, string beans and sugar snap peas seem to work well with my system. I'll continue to monitor. Thx! [ more ]
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J-Pouch ForumsGeneral Discussion
Vitamin Suggestions
K Kia
Kia Thank you, everyone, for your suggestions. I am going to make an appt for some blood work and look into all of your suggestions. Much appreciated!! [ more ]
Subzeromambo I take 2 TBS of Trace Minerals Liquid Vitamins/Minerals, 7000 IU Vitamin D3 (my D3 level is very low) and a liquid Iron supplement (about 200% of the daily recommended dose because my iron levels are very low). I notice the biggest difference in energy levels and joint flexibility from the Trace Minerals supplement. [ more ]
Bodoni I agree with Kathy. I have taken the chewable vitamin, Forvia for years. These are made for folks with IBD. [ more ]
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J-Pouch ForumsGeneral Discussion
Defecography
LorsallLorsall
David1969 Dr. Strong at the Cleveland Clinic is who treated me. I was there for three weeks after I had my first j-pouch removed and a second one created. Believe me it is worth the trip. I traveled from NC to Cleveland. Good luck! [ more ]
Lorsall Thanks for your response, guys. I thought this was odd when he told me about it from what I have heard on this site before. I think he is just trying to be thorough in his testing because if he can't figure out what is wrong, I have to go to Cleveland Clinic in April. I really don't want to make the trip, so I appreciate his effort. [ more ]
liz11 yes I've had defecography, but without bladder test. What david says makes sense though... bladder movement could cause bowel/pouch changes. And yes. ASK. do not be afraid. This is YOUR body. good luck [ more ]
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J-Pouch ForumsGeneral Discussion
Skin Tags
GoodspeedeGoodspeede
skn69 Could Jan or someone please explain to me what "skin tags' are as compared to granulation? Here skin tags are virus related (warts) and as such are treated like them and burned with a form of liquid nitrogen, granulations are usually on the edge of an open wound like a new stoma that is trying to close over or like my stoma that slowly grows these little rice grains at the edge that need to be cauterized to prevent them from covering over the stoma. I am trying to figure out what your skin... [ more ]
CeeeeCeeee My colorectal surgeon calls mine "skin tags". [ more ]
fq mine are skin tags. [ more ]
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J-Pouch ForumsGeneral Discussion
Pus from Navel
K KiwiPoucher
cksind Dear KIWIPoucher Kindly let me know what happened thereafter. Iam experiencing something similar. Yesterday I inserted and moved my finger inside my belly button just to clean the navel. Today morning I noticed pus like discharge from my belly button! May be I forced my finger too deep into the naval rubbed vigorously. Perhaps I should have used antimicrobial spray for the purpose of cleansing my navel. [ more ]
KiwiPoucher Thanks Guys Have emailed my surgeon. Caroline [ more ]
TE Marie I had a big abscess there too and you need to see your surgeon and/or GP ASAP. Mine would quit draining at the top of it at my belly button and when that would dry up it would drain a few inches down and went back and forth like that. Hopefully they can just drain it and put you on antibiotics to clear it up. After take down surgery I ended up with a big open hole that I had to pack until it healed, no stitches. That's why I say get in soon because I'd hate for them to have to cut it out... [ more ]
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J-Pouch ForumsGeneral Discussion
wieghing options, insight welcomed
W wannarun1
wannarun1 Thank you all for your input! I feel much more informed and sure to go in to this next appointment better educated should this drug not work. Jan- Your point was one question I did ask the surgeon after being hit with how bad my disease and surgery is needed. response was not sure. Last year, april fools day lol, I landed in the er after my back went out. GI ordered a flex sig then was put on prednisone. My chiro said L4 was out. Once the prednisone kicked in she was able to adjust and have... [ more ]
Jan Dollar Not to give you more to think anout, but I think you need to understand that colectomy, with or without a j-pouch, is by no means any sort of guarantee you will not still need drugs, dangerous or otherwise. My point is that particularly if this is Crohn's, you may still need maintenance medication. Even with a UC diagnosis, there can still be residual disease or extra-intestinal manifestations. My diagnosis always was, and still is UC, but I take Simponi for my inflammatory arthritis, which... [ more ]
kathy smith Going to see Dr. Chen would be optimal! He's the best. kathy [ more ]
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J-Pouch ForumsGeneral Discussion
How to stop the stoma inactive!!!!!
U UCWarrior2010
D. Nocerino After a while even when my stoma was active I was so quick at changing the bag that I could get it done in 30 seconds. I had everything already laid out, I cut the hole before hand because my stoma was no shrinking anymore, and just in case things got out of hand I did it all over a toilet seat. More practice and experience in changing will pay off! [ more ]
Holly M about 3 big ones or a handful of little ones. You don't want to eat too too many. Just enough to slow output not stop you up. Experiment with a couple at first and see how it goes. And when I traveled I ate a couple of rice crispy treats and that slowed things down also. Plus they are good and sweet to eat!! Got a big box of them from Price Club. Good Luck! [ more ]
UCWarrior2010 I was quite stressed and panicked a little while I was changing the wafer. But, in the end it all worked out and I think I did an ok job in putting on the new wafer. One more silly question...so how many marshmellows do you guys eat to get the stoma to stop outputting? [ more ]
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J-Pouch ForumsGeneral Discussion
Washington DC area surgeons
F freedom75
flyer I had my J Pouch surgeries with Dr. Elizabeth C. Wick. She is a wonderful surgeon and doctor. She works along with Dr's Gearheart and Efron at Johns Hopkins. I am very happy with my J Pouch. [ more ]
acorn Freedom, I just sent you a PM. [ more ]
Jpouch8888 I had my Jpouch surgery in NYC (where I am from). I only saw Dr. Efron for follow-up scopes. Johns Hopkins is one of he best hospitals in the world so you are under great care. I saw Susan Geaharts reputation and she has great training as well. Maybe make a phone call into the office and see if the nurse can tell you information as to which Dr. has the most Jpouch experience? [ more ]
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J-Pouch ForumsGeneral Discussion
The Movie Prometheus
N new2thisstuff
CTBarrister [SPOILER ALERT!] I finally saw this movie and the scene you refer to. Actually the character was a doctor and she gave herself an emergency C-section with robotic equipment to remove an alien fetus in her womb. Her Doctor boyfriend had been infected with alien cells. After having sex with him and getting impregnated with his alien-tainted sperm, the alien fetus rapidly matured and was detected on an ultrasound examination. This necessitated the emergency C-section to get that alien out of... [ more ]
kathy smith This all seems off topic. kathy [ more ]
CTBarrister kobi, You are a true sci-fi fan. So what you are telling us basically is that the OP and Spooky are goofballs who did not pay enough attention to the movie? By the ways, I am now wondering how these pain killing drugs of the future will be. Let's also hope they have some better drugs for IBD as well so that we can all go out and fight Aliens when we get off the potty. [ more ]
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J-Pouch ForumsGeneral Discussion
Results after a long day at clev
Uc-DanielleUc-Danielle
TE Marie The endoscopy isn't too bad, no prep. They give me conscious medication and the flex tube is similar to a colonscopy one and the doctor can see what's going on. I was diagnosed with GERD this way and have had to have my esophagus dilated twice. [ more ]
Uc-Danielle I have an EUA scheduled with remzi in march and yeah my appt says endoscopy. I'm Nervous Bc I don't know what to expect and I'm in pain right now. And worried it will just get worse. [ more ]
liz11 danille. my situation is different as I will be in yet another EUA with Dr. Remzi. So I will be fully knocked out! I imagine if Dr. Shen is just doing this in the endoscopy clinic you will get the demerol/versed cocktail (like in a colonoscopy).. so you won't feel anything. And Dr. Shen is very very kind. He will not allow you to be in unusual pain. Trust me. And I've made absolutely ZERO progress with the insurance situation. Other than the financial consultant in the colorectal dept... [ more ]
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J-Pouch ForumsGeneral Discussion
constant watery stools
M MJFMJF
Minn Mark When this happens to me, and it does w/o having the flu or other sickness, I increase my probiotics. I eat Activia daily anyway, but when I have watery stools I add taking Culturelle pills. In a few days it always turns around back to my 'normal' state. Good luck, Mark [ more ]
CeeeeCeeee That is how I prefer my b.m.s! Fast and easy to empty pouch and as long as I have full control (I do) .......who cares? [ more ]
Scott F Almost any illness affects my gut, and can take a while to clear up. I'm glad you don't have urgency. Are you doing anything to slow things down (e.g. Lomotil) or thicken things up (e.g. Metamucil)? [ more ]
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J-Pouch ForumsGeneral Discussion
2 month post surgery help!!!
DN D. Nocerino
D. Nocerino I'm actually finding that the later I eat the better. I tried having dinner a 5pm and by midnight I'm so hungry and my system is so empty that I really can't sleep at all. But if I have a big lunch at 2pm and don't eat until 10pm or 11, then I can get solid sleep till 5am, but would stay up for a couple of hours with 2 to 4 bm's then back to sleep at 7am and wake up at 10am. Still tiring but its not bad. [ more ]
suebear For sleeping better at night you can try eating dinner either earlier or later, you will need to experiment. I get up at least 2X per night,sometimes 3. Some tricks I use to be able to get back to sleep is that I don't turn the light on. I also don't let my brain start working. And most importantly, I get aerobic exercise before dinner which completely wears me out; falling back asleep is never a problem and I feel completely well-rested every morning. Sue [ more ]
D. Nocerino What about at night? I can't get more then 3 hours of solid sleep and I'm always tired. I tried imodium and it does help sometimes. Any other tricks for sleep? [ more ]
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J-Pouch ForumsGeneral Discussion
Is your j-pouch output similar to your ileostomy output?
P Pluot
CeeeeCeeee This was really a concern of mine pre-takedown because my output with my ileostomy was like having a gusher! I had trouble staying hydrated. Fortunately, after takedown my output remained liquidy (I prefer it that way) but nowhere near what it was prior to takedown. I don't take anything to thicken output except once in awhile I eat oatmeal. That helps me if I should experience butt burn! [ more ]
chiromancer One of the issues is that that small intestine adapts to removing more water from the stool over time. So a loop ileo not only involves less intestine it is also the bowel/body adapting to not having a colon. My J pouch output was similar to my now end ileo. [ more ]
Spooky I've had both an end and a loop ileo. I can say that the j-pouch output is most similar to the end ileo. It's nothing like the loop, which for me was pure liquid. Thank goodness for that! [ more ]
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J-Pouch ForumsGeneral Discussion
diflucan/yeast
S scallop
Jan Dollar What??? No red wine?!?! There has to be a better way. Now that I am well past menopause, I can finally enjoy wine and spirits. Even with Flagyl, I am okie dokie with it. A while back, there were some folks here who pretty much swore by Candigone (a multi-ingredient supplement). Another strategy might be to take a yeast probiotic, such as S. boulardii to compete against the C. albicans, and maintain balance. VSL#3 does not contain S. boulardii. Plus, it is pretty cheap, about $15 at Amazon... [ more ]
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J-Pouch ForumsGeneral Discussion
Memory problems
B Bodoni
Rocket I have memory loss too. I don't if its a combination of meds and lact of sleep or what. I can't tell you how many I forget things. Like when I get home from work, after I ate and watched some TV, I just forget. For example, when I get home from work, I change to sweats now that we are in the Winter season. Prior to getting changed, I empty all my pockets, watch, wallet, car keys, etc. Sometimes in the morning, I can't find my wallet, car keys, cell phone, etc. I am thinking that I placed it... [ more ]
suebear I have this too; mine's not related to anesthesia or surgery, but I think is a safety mechanism. Like Kathy, mine kicks in under stress. If something horrible happens I tend to not remember it. It used to bother me; but now I look at it differently. I don't have to replay bad events over and over again. Sue [ more ]
skn69 Marianne, That is my 'normal'...I teach in 3 different schools with between 15-30 students/class and up to 2 classes a day...I cannot for the life of me remember names even if I have just asked them...now we have a system that every time someone answers a question they have to announce their name first! (this is getting embarassing!) or I don't give them the point...and I confuse certain ones too with kids from other schools... I started back at one of my old schools after a 3yr abscence and... [ more ]
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J-Pouch ForumsGeneral Discussion
First post. Overwhelmed, enlightened and need help. :(
K Kia
jeane Don't give up Kia. Some of us have been struggling with issues as well. I agree you need a very qualified jpouch GI or go see Dr Remzi and Dr Shen at Cleveland . I was there last year and they will try sad help you in any way possible. This is a lot of independent trial and werir with medications at times and many if us suck it up many days with pain etc. I have found the advice on this site to be invaluable. [ more ]
Kia Thank you all so much for your fast and helpful replies! I am just in tears bc this has been a long, lonely battle with no answers. I am grateful and hopeful since finding this board and receiving your replies. [ more ]
kathy smith I would suggest that you keep on trying to find a GI who is familiar with j-pouches. However, the very best thing to do would be to go to Cleveland Clinic because they take care of the problem pouches. If you're not able to go there, you can actually do a remote consult by sending your latest information to them. What a pain in the arse to have suffered all these years. I would also suggest that you research a permanent ileostomy - it's nothing like the temporary. It might help you get your... [ more ]
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J-Pouch ForumsGeneral Discussion
For those lucky ones going into surgery
BarbieGBarbieG
BarbieG Jpouch surgery is tough but well worth it in my opinion. Mine is almost 19 years old & most of the time I have been fine. Just chew your food well. This site is great for research. Remember most people with good functioning jpouches are out there living & don't spend time on this site. Read the success stories! Good luck! [ more ]
dgtracy This helps. Thank you. I am having surgery March 05 2013...no idea which surgery to get yet, Ileo ostomy or J-pouch..current reading as much as i can in here to choose. [ more ]
BarbieG Remind everyone most hospital rooms don't let u have fresh flowers. A real bummer cause they can really cheer u up sometimes. They typically go on the nurses desks unless u have a private room. Thought I would mention this since Valentines day is coming up. It's a waste of money. Tell your loved ones wait till u get home to send flowers. You will enjoy them more there anyway. [ more ]
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J-Pouch ForumsGeneral Discussion
Cuffitis
CristolCristol
Jan Dollar Canasa is mesalamine suppository (same drug as Asacol). Anucort is hydrocortisone suppository. Humira and Simponi are both in the class called biologics. They specifically target the inflammation causing substance called TNF. They are by injection only. Remicade is another one, but is by IV infusion only. They were first used for rheumatoid arthritis, then ankylosing spondylitis and Crohn's. Simponi is awaiting FDA approval for UC. Anyway, they are expensive and generally used after failing... [ more ]
Cristol What is Canasa or Anucort? I am on cipro---don't know if it is similar? Jan--what is Simponi? Humira? Do you have Chron's or UC? Thanks to all of you! [ more ]
TE Marie It took me 9 months, after diagnosis, to get my cuffitis under control BUT I was using Anucort and Canasa off and on. I ended up using just Canasa during the last 4 months to get into remission. I had acute and chronic cuffitis which means I will probably have times when I'm not in remission. I am taking daily Canasa again for a flare up. Cuffitis is UC, per the pathology reports. I had small ulcerations and bleeding when it was diagnosed. Some people do well with Anucort which is much... [ more ]
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J-Pouch ForumsGeneral Discussion
urgency
S Stone
Stone Thank you so much for your input. It was a blockage but its all ok now. I had some hot tea and I feelmuch better. Sometimes you don't know whats happening until its all gone. Its like my mind just shut down. I was just so stressed out and scared. Im glad thats over with. Thank you all again for caring so much God bless. [ more ]
TE Marie You could also have IPS, Irritable Pouch Syndrome. It's like IBS but called IPS when you have a pouch. I take antispasmodics for mine as well as antidepressants which can help as well. If it might be an obstruction, as mentioned above, a glass of white grape juice or apple juice can help get things moving as well. The other things suggested are great to do as well. IPS is another possibility. [ more ]
BarbieG Sounds like you are having spasums. Try Levsin or Ativan, scripts. Are you passing just gas? Try OTC gas relievers. Try to keep busy & your mind off of the bathroom. You could have a blockage also. If you start getting pain, call your doctor. I find walking and stretching can move a blockage. Drink hot green tea & don't eat anything untill you pass something if you think you have a blockage. [ more ]
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J-Pouch ForumsGeneral Discussion
Physician rcommendation
M MJFMJF
BarbieG On the Home page there is a link "FIND A SURGEON" in a blue box. Try Castle Connelly Top Docs, too. Try these links. http://www.fascrs.org/physicians/Affiliated_Groups/ Good luck. Just make sure your surgeon has extensive experience. Like hundreds of happy patients. [ more ]
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J-Pouch ForumsGeneral Discussion
Calmoseptine
JD Jeff D
Jeff D Both my procedures were completed at the Hospital of the University of Pennsylvania. [ more ]
mgmt10 Welcome aboard! I cant live without my Calmoseptine! I see you are in Philly. Where did you have your surgery done? I had mine at Jefferson University Hosptial. [ more ]
Donna H Hi Jeff, I love Calmoseptine as it heals and cools. I am still using it after 17 years. Some of us take much longer to heal than expected but things do get better. Stick around here and ask questions for anything and everything. Chances are someone is going through or has gone through the same situation as you. Use the "find" tool for specifics - this can really help to pinpoint some answers for your needs. You will meet many wonderful people and am so happy you found this site. You are... [ more ]
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J-Pouch ForumsGeneral Discussion
Working out
B Blairisking
skn69 Blair, I was an avid sports freak and worked out nearly daily..At one point a friend of mine (fitness coach) put me on amino acids to help build up my muscle mass...I had lost a lot with all of the surgeries and bedrest...and I had absolutely no problems...but, and here is where I am 'over'cautious...go slowly, take it easy on the weight and do not overdo things like squats, leg press, invertion trainning (especially with weights) or any lifting that could put excess pressure on the rectal... [ more ]
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J-Pouch ForumsGeneral Discussion
wellbutrin sr?
W wiggles
Laurie49 Wiggles, stop worrying about the "what if's". You are creating problems before they exist. The expert said "usually", it's just as easy to believe the odds are in your favor. [ more ]
Scott F *Some* slow release formulations are fine for J-pouchers, but your doc needs to verify that they are designed to be released and absorbed in the small bowel. If your transit time is very fast that can also create a problem. [ more ]
skn69 No time released, slow release, coated or any pills that say 'stomach safe'...that just means that they take longer to 'melt' in your digestive system and you risk 'spitting them out' whole... Liquid, normal tablets, gelcap, effervecent, softgels etc ...or you may not get the dose that you need. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Surgery Tomorrow :(
L LisaB827
D. Nocerino Stay strong! Everyday will be a better day and it will be over soon! I had mine done at Mt. Sinai Toronto so if they're similar then staying in the hospital isn't so bad. Just bring as much stuff as you can that makes you occupied and happy. Good Luck!!! [ more ]
Twinstar I hope everything went well! My girls were 11 months during my first surgery and I barely saw them while I was in the hospital- so hard. But, it made coming home to them that much better. I hope that you're reunited soon [ more ]
TE Marie Great! I hope you and your stoma work as well as surgery and recovery. [ more ]
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J-Pouch ForumsGeneral Discussion
National perinium day
skn69skn69
Jan Dollar Progress by returning to the basics! What a simple solution... Jan [ more ]
skn69 Jan, Apparently in England they have lowered the stats from around 50% to less than 10% for episiotomies by changing the birthing position from the standard one (which is very good for the midwife of Obs/gyn but lousy for the mother/baby) to giving birth on your side! Yup, they showed the devise and appently they have a really good success rate with it (fewer episiotomies, fewer post partum complications)...here they are working on getting mothers to give birth on hands & knees (easier... [ more ]
Scott F CT- If you have to ask, you can't afford it. :-) [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Cholestyramine
Holly MHolly M
Subzeromambo I put mine in orange juice, mix very well and chug it down as fast I can. Follow the directions carefully about when to take it. always take it with lots of liquid. meds should be taken one hour before or four hours afterwards. Some docs want you to take it before a meal. It really works well. [ more ]
Holly M thanks for all the good info. I do have problems taking stuff that tastes awful, so if I get it will def try it in applesauce. [ more ]
kangaroo woman A colleague of mine had to take it for a while after she had her gallbladder out to decrease the diarrhea. She said mixing it with water was awful and made her nauseaus. She mixed it with applesauce and said it wasn't bad to take at all...couldn't taste it. Please try that to deal with the palatability issues. [ more ]
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J-Pouch ForumsGeneral Discussion
Illness
ManchesterManchester
Jan Dollar You can delay it a few days, if you need to. If this is just a cold, it should be OK, but if this is the flu and you have a fever, best to delay it until you are feeling improved. You can put a call into your doc tomorrow and get advice. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch- pushing a lot
ML Midnight Lady
Pixie I use a hegar dilator. I read some posts that some people just use their finger, but for me the dilator is easier. If you have a chronic stricture you should see if you can start dilating at home. It may be able to help you empty more easily! (I know that bathroom through a straw feeling. Gets old really fast.) [ more ]
jeane Pixie, What do you use to dilate? My surgeon frowned upon this but he was not trying to go to the bathroom through a straw. I still have stricture issues that they want to deal with via surgery as I also have cuffitis issues. [ more ]
Pixie If you look up my old posts I wrote a few about dilating. I had problems with a stricture after take-down and have to dilate it to keep it open. Originally I was dilating weekly, I have slowly decreased the frequency to once a month or so. At this point for me it's not like my stricture is closing the pouch off completely, but if I dilate it's like it opens it up that little bit more -- this allows me to empty more easily (less pushing) and I notice I'm not as gassy (incomplete emptying... [ more ]
See all 13 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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