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J-Pouch ForumsHelp! Need advice now!
Absolutely panicing and the thought of a new ostomy
A Andreita
Former Member And no problem, hope everything works out for you Message me or email me anytime if you need extra support, I am here for you love You are soo prepared! That is amazing, you have always been resilient! I have complete faith you are going to rock this [ more ]
Andreita I asked a mod and he changed it for me kindly (thanks again) I'm hanging in there. Last night I had a dream that I had gotten a loop and I woke up feeling for a bag I'm still not 100% mentally ok with this and I will talk about it more with my surgeon and hopefully he can help me get through this They need to make it a loop because it's difficult to make an end with a jpouch already in place. Iearned that the other day I already ordered convex bags and scissors because I threw away... [ more ]
Former Member I never knew you could change your name on here?! LOL! Pretty cool! How did you change your name??? How are you doing??? Are you doing okay??? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Post heart attack and healthier diet caused blockage
D Dunninator
Former Member chewing your food like it’s a competitive sport. LOVE IT!!!! [ more ]
Former Member Sorry to hear that honey! I am glad you made it though I would definitely say eat Greek Yogurt and oatmeal. Oatmeal is a healthy heart diet, that is amazing for the heart. Drink water: before, during, and after each meal. That is a good hydration method and it keeps the blood thin. Move around gently since you are a heart attack survivor, walking is a good idea or riding bike but not vigorously. Hopefully you do not get another heart attack, but if you do. Chew four 81mg Asprin tablets, that... [ more ]
Scott F You might be able to resume your healthier diet if you’re able to commit to chewing your food like it’s a competitive sport. Is this your first blockage? Sometimes we blame diet for things cause by something like a bowel kink. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Looking for J Pouch specialist In Pittsburgh area
T Tobsterr1
Former Member Lol! Totally makes sense. I wish they had Pediatric Gastros back then for you guys. I find that Pediatric gastros seem to be more sentimental. I see a adult gastro now, its not too bad but I definitely miss being in the Pediatric gastro office LOL [ more ]
Jan Dollar Who me? No, I was 15 at the time and treated on the adult medical floor And treated by an adult gastroenterologist. Not sure they even had pediatric GIs in the early 1970s. I am older than dirt and they had not even invented fiberoptic scopes yet. Jan [ more ]
Former Member ❤️
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J-Pouch ForumsHelp! Need advice now!
Foreign body in the ileo anal anastomosis
KC.KC.
Kushami ❤️
Jan Dollar Um, yes, surgical clips are left in place. Typically, they are often vascular clips and may not be inside the j-pouch. However, the body is an amazing thing. When it perceives something as a foreign body it will work to expel it, even if it takes years. It happens with sutures, orthopedic hardware, vascular grafts, etc.. Also, if you had a polyp removed a clip may have been put in to stop bleeding. These typically slough off in a few weeks. Hopefully, this clip was the source of your... [ more ]
Former Member ❤️
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J-Pouch ForumsHelp! Need advice now!
Remicade vs. Inflectra? + Imuran too?
K KK1110
CTBarrister I think this skit is that you are referring to (profanity warning to the PG-13 people on the board): https://m.youtube.com/watch?v=mbHJ0KNYEoA There is another connection of Keith Richards to this board and this discussion. Nicky Hopkins, a great studio pianist and keyboardist of the 1960s, was the keyboardist on some of The Rolling Stones greatest hits of the 1960s and 1970s. Richards and the other Stones wanted him to be a permanent member of the band, but because of Crohn's Disease he... [ more ]
Former Member You are welcome! Hope everything gets better for you Thank-you for offering to stay in touch, I love it when people do that [ more ]
KK1110 Hi Lauren and CT Thanks again for sharing your perspectives. I'm only on Remicade after talking with my doctor and getting a 2nd opinion too. My Dr. didn't say anything about restrictions with alcohol but since a social drinker too, it's been pretty easy to stop and see if that helps too. Love the Keith Richard's liver comment and agree! ... Robin William's did a good skit about him once if you haven't seen it. I'll stay in touch as my treatment progress and wish you both good health too. [ more ]
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J-Pouch ForumsHelp! Need advice now!
im sure you hear this alot but i need help please.. im begging for advise
S StevenChar78
StevenChar78 sorry Anais to hear that, my contractions started a year after the first j pouch surgery the nortriptyline does work but I found out after over taking it it will completely stop working, my contractions started back up on Saturday and have been suffering since i stopped taking the nortriptyline for about 30 hours and i started taking it again and my contractions are gone i would try this medication it helped me a lot just make sure he takes as directed, because i had a small contraction i... [ more ]
Former Member I am sorry that did not work honey, I would reach out to the gastro/surgeon at this point. [ more ]
Anais My son started Cymbalta but it did not help with the painful contractions. He is been suffering for almost a year, right after connection surgery. Contractions are constant. Do you think the other one you are taking might be better. Please let us know. Thanks! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Can't empty my pouch! Anyone use a catheter before?
TraceyHTraceyH
Former Member I am sorry the catheters are not working Tracey! I hope you do not need a bag again but if you do, I am sure you will be resilient with your ostomy if you need one Have you tried that step stool??? Or enemas??? [ more ]
TraceyH I'm sorry to hear that you have this problem, as well! I'm back in PT again, but it's not helping, so I'm looking at other options like injections, etc. with a referral to GYN. My pouch doesn't like the catheter at all... Frustrating is putting it mildly, for sure! Stay well!! [ more ]
Former Member ❤️
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J-Pouch ForumsHelp! Need advice now!
Stomach Gurgling with Pain
G Gom
Former Member Been a while since we talked, hope you are doing great and hopefully you will pick out a name soon lol. [ more ]
King Krapper Yea I would say that the more time that passes it’s just going to get better, after my takedown I was really gassy as well and feeling the contractions rolling through my gut over and over and thinking here we go again to the restroom just for it to be gas. I’m like 2 yrs out now and I still hold my breath if I decide to try and fart standing up hoping it’s dry and not damp after lol. But what’s worked for me is if I’m gassy I lay on my side or stomach and I’m usually able to pass the gas... [ more ]
Former Member Nice to meet you Gom!! I am a vegetarian too! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Desmoid tumors
SS Sathyanarayanamoorthy Sridharan
maddie18 Wishing you all the best, Good luck!!! [ more ]
Sathyanarayanamoorthy Sridharan Pain will be very mild only and it will be just the discomfort but if it captures other organs nearby it will bring in complications which will be very serious. I am still studying how to control that with food as the doctors here in India say that there are no fixed medication for this. One thing I noted for now is to avoid high sugar food, Wheat, and all purpose flour. Let us see what other seniors say here. [ more ]
maddie18 Hi, I have never heard of this but I am curious if you have pain with the desmoid tumors? [ more ]
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J-Pouch ForumsHelp! Need advice now!
pain with pouchitis?
duck11duck11
Funky26 Hi Jan - Did the abdominal pain stop and if so, what was used to stop the pain? Thanks [ more ]
Jan Dollar I had loads of pain with my pouchitis, particularly when it became chronic. I actually thought I had a hot gallbladder or bowel obstruction, but those were ruled out. Jan [ more ]
Funky26 Hello Duck11. I am experiencing what you describe with sharp abdominal pains. I also get blood but not much. What did you do to relieve the abdominal pains? Thanks [ more ]
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J-Pouch ForumsHelp! Need advice now!
Looking for a J Pouch surgeon in NYC
DK Doug K
Katt I don't know if he even takes new patients because he's getting a bit up there in age (he's about 67/68), but Dr. Jeffrey Milsom at Weill Cornell in NYC is an absolute Godsend. He literally and figuratively saved my life tenfold... BEST OF LUCK TO YOU!!! [ more ]
Clairesmom Our family can recommend Dr. Feza Remzi. My daughter travelled from Georgia to have surgery with Dr. Remzi. She had 3 surgeries and now has a J Pouch. She trusted and liked Dr. Remzi very much and is pleased with his care as well as the excellent care at NYU Langone and at Tisch, the new hospital where her last surgery occurred. [ more ]
pammieskrh Remzi did my j-pouch redo. Very happy with results. Love Dr. Remzi! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Butt burn
M MaryL
Former Member Amazing!!!! Do you ski or snowboard??? [ more ]
Former Member Yes I'm very lucky to live with no covid and a country with a great government and a economy that exports food so now food is cheaper and loads of toilet paper.we are short on rice and flour but oversupplied with fish,toilet paper and meat.I love New Zealand. [ more ]
Former Member Oh cool!!!! Lucky!!! I love your language over there! I know you guys speak English too but I love your English differences, soo cool! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Weight Loss Issues
SeirlaSeirla
Seirla I appreciate all the tips. I'm allergic to sugar substitutes, so I don't eat low sugar or sugar free products to begin with Aspartame and Xylitol are big no-nos for me even before I ended up with UC. My face swells up and I can't open my mouth for days. [ more ]
Former Member Thanks hon [ more ]
lclassen ❤️
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J-Pouch ForumsHelp! Need advice now!
Can’t Do Takedown
DK Doug K
Former Member Happy to hear that [ more ]
Doug K Thanks - I agree. The good news is that my bowel has slowed down a little and I am feeling more optimistic about the J Pouch [ more ]
Tovia Hi Doug - I'm probably too late to the discussion, but two words... second opinion . It never hurts to go for second opinion. My husbands first GI was not listening to our concerns and thoughts on how to treat the UC. We went for a second opinion and found someone who would listen and engage in discussion. Lots of love, Tovia [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch removal
R Rborth
Former Member I am sorry to hear all of that! I do not blame you for wanting to get it removed, I would do the same thing this point. Do you want an ostomy or K-pouch??? [ more ]
Rborth I have several fistulas and a leak in my jpouch that has created an abscess near my tailbone. I have a rectal vaginal fistula with seton placement, that still causes pain and has bleeding and stool leaking. I recently had a drain tube in to try and drain the abscess near my tailbone, once they removed that they put in stints in the three openings my jpouch has so that it will drain back into my jpouch instead of that area near my tailbone. After the stint placement, it migrated and started... [ more ]
Pals What issues are you having ? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis?
Bent-ArneBent-Arne
Former Member Maybe go for a long walk or don't eat red meat.or chocolate is like liquid lava [ more ]
Bent-Arne No, not really. Eating the same as usual. But I'm probably eating way to much sugar... [ more ]
ytcrockpot Are you eating anything different? Taking any new meds or vitamins? Sometimes the slightest thing we ingest can cause havoc on our system, either diarrhea or very formed stool. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Dr. Bo Shen Insurance
T Taichitwin
Scott F The degree to which a particular health insurance policy is restrictive about who you can see varies a lot - it has nothing to do with the health insurance marketplace. I get my insurance through the marketplace, but I chose a Blue Cross plan with a broad, national network (that’s more expensive, unfortunately). Hopefully at the next open enrollment period you might have more flexible insurance options available. I know this doesn’t help much now, but it’s worth tucking away for later. In... [ more ]
Former Member I think the answer above is the best. I would try the answer above. If that does not work, then definitely do not lose hope. If you ever need Dr. Shen's email, let me know. I am not sure if he can help on this matter or not but let me know. Keep us updated, good luck [ more ]
CTBarrister Jacob, I have fought this same issue previously over another Pouch expert, and I find it odd that they have put the burden on you and your GI to determine that "there is no one in network and in my city qualified to deal with my chronic issues related to my J-Pouch", when they should have the burden of stating who in network has such experience. When I ran into this issue in 2009, and my Connecticut insurance company pulled the plug on a New York City pouch expert (a Shen type in his day but... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Number of toilet trips
ToniToni
ytcrockpot Totally agree with Scott, 4-6x a day for a well pouch, lucky if you go less. In my younger days I went about 2-4x a day with no meds, that was over 30yrs ago lol. finding a gastro that specializes in the pouch is a big help, but hard to find. I would travel the country (which I did) if it meant finding the right help for my pouch. [ more ]
lclassen I'm about 10+. Let's put it this way... I never go to the bathroom without pooping! My GI says that I have had a "less than desirable" outcome to my surgery. I don't have chronic pouchitis or cuffitis. Just had my pouch-oscopy this month and everything looked great! Don't need to have another one for 3 years! [ more ]
AWalkingTestimony On average for myself I usually go about 5 to 8 times on a bad day and 3 to 5 on good days. Like @Scott F I also take Psyllium fiber capsules and Imodium(only when I need to) to slow things down. After my surgery I was going around 10 to 15 times a day but things got better over time. I have only had my JPouch for a year and 2 months. Never had accidents. [ more ]
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J-Pouch ForumsHelp! Need advice now!
2 years post-op pain...
K KB1804
Former Member Sorry you are in pain!! Hope you get better! Yeah, I agree with you 100%. A lot of people have had problems with certain exercises on here, especially involving core. I hope everything gets better dear. I think you maybe need to get checked out by your gastro. I would make an appointment, especially if you do not feel better soon. Please keep me updated I personally do not do much core exercises anymore. I only do about 10 situps and then I stop. That seems to not cause me anymore problems... [ more ]
KB1804 No, this was caused by some light core exercises. I’ve had no pain/gas issues recently other than this. I am still in a lot of pain, with cramping and reflux and I have not eaten at all today. [ more ]
Former Member I have experienced that before around my scars area before. I believe mine was pressure pain from gas and overeating. Whenever I over ate, I would feel that pain. I increased my water intake and ate little less and everything went fine. Are you overeating? Are you drinking enough water? And are you eating gassy foods??? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis and/or Cuffitis
G grandmaof1
SteveG Might your pain be related to an anal fissure? I had one several years ago, it causes pain after going to the toilet if something gets stuck in the fissure. I thought it was pouchitis / cuffitis for several weeks, until I finally found out. With a fissure it helps to clean the anal region with water (shower), not only toilet paper. Pushing is usually not a good idea. If you are constipated, have you tried psyllium husk added to a meal with enough water? [ more ]
Boda My daughter had similar symptoms and it was cuffitis with a stricture. It was difficult to go and felt like a pushing a bowling ball out. It was due to inflammation. They did a scope and found it. They stretched it and used some sort of shot on it and it hasn’t come back. [ more ]
MJC I never have a fever with pouchitis and have had the same symptoms you are experiencing. Do you still see your Colo-Rectal surgeon or just your Gastro? I would call and get in sooner than 2 weeks! Good Luck. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Remicade treatment
Mema 1Mema 1
Former Member Your welcome and okay sounds good! Good luck [ more ]
Mema 1 Thanks, Lauren, appreciate your answer. One of the problems was that my doctor was on vacation and hadn't gotten back to me and I couldn't reach anyone else. I did speak to the nurse in the infusion center and she felt it was okay to wait. [ more ]
Former Member This is a really good question!!! Definitely! I would recommend asking whoever prescribed you the medication. I would hate for someone to tell the wrong advice and then something happens. Definitely ask the doctor ASAP [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch contrast ct scan
J Jess623
Former Member J pouch redos are definitely possible but it depends on the situation of course, i do not know your exact situation but never lose hope. I hope everything will work out and please keep us updated I am sorry for everything you are going through [ more ]
Scott F Pouches can definitely be made again, depending on the cause of the first pouch’s failure. It sounds, though, like you might just have a simple stricture. These can be a significant nuisance, and sometimes repeated dilations are needed, but they don’t generally require a pouch re-do. [ more ]
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J-Pouch ForumsHelp! Need advice now!
diversion colitis type discharge with pouch
J JHendrix
Former Member Glad to hear all of that!!! I think we all panic prematurely at some point in our lives, totally normal [ more ]
JHendrix I didn't end up speaking with the doctor as the discharge disappeared as quickly as it began. It was very unusual but has returned to 'normal'. Who knows. I panicked prematurely...not the 1st time! [ more ]
Former Member Could possibly be pouchitis; that fistula sounds very suspect, I hope its not Crohns. What did the gastro say??? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anal Abscess? What happens now!
F feirs1
Former Member I agree to definitely find a specialist for this. Since you do have concerns, maybe you should possibly get a second opinion to make you feel better if you do not like your doctor's suggestion. Hope this helps! [ more ]
feirs1 Thank you for the note. I am talking to a colo-rectal surgeon. Praying that it isn't a fistula. Waiting on MRI results, I feel completely fine now after what I thought was a really bad hemorrhoid so this is all coming as a shock. I am terrified of the surgery both from a recovery and concerns over incontinence. Any perspective on these two since it sounds like you had surgery? [ more ]
Jaypea I have had several abscesses following my j-pouch. Please make sure you see a colo-rectal surgeon if you are going to have it surgically managed. I had one abscess turn into a fistula but I am completely healed now and have not had an abscess for over a year. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Intestinal pain and recommendations for Chicago drs
B beckysmom
Former Member I would look up gastro/ colon surgeons in the area on google and look at the reviews if you have not found a doctor yet. [ more ]
beckysmom Dear Feeleyd and Woogy, thank you both so much for your responses. I will pass this on to my daughter. Feeleyd, thank you, she has been able to teach from home and is very afraid of going to the drs/hospital, I will let her know it is all handled well. Best to both of you! [ more ]
woogy I also see Dr. Hanauer at Northwestern. He's a great doctor. My surgeon for my pouch was Dr. Scott Strong also with Northwestern. Another fantastic doctor. And the teams they work with are also very helpful. Good luck. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Why am I Losing Weight?j
R rhemac
Former Member Maybe you are absorbing less because you are getting older? Just a theory. [ more ]
Scott F When you tried Metamucil did it really have no effect on your stool consistency? What dose were you using? I’m starting with Metamucil because it works in a very simple, mechanical way. Not everyone likes the effect, but it would be strange to not get an effect at all. Also: do you know how many calories you’re consuming in a day? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Total Colectomy Links to Depression
CL Christopher Louie Szabo
tulsamom I wish I could take them again. You all are reminding me of why I try them again every year. It’s about that time again. 😂 in the olden days, they did make a difference. But each one pooped out after a while and I’d have to switch. That happens with some people. Since 2013 I haven’t been able to take them because of severe side effects. It’s been a much tougher life since then. [ more ]
Former Member Yeah me too Meatball they took me off lexapro for a week and I turned into a crying mess again .but as soon as I started again I became content. [ more ]
Former Member ❤️
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J-Pouch ForumsHelp! Need advice now!
Fissure
K kentuckyboy
nicole s ❤️
Former Member I know asking for a doctor's help can be dreading and I am sorry for that, sometimes life is not fair unfortunately. I would much rather you ask your doctor, I have faith you can find the strength to ask him for his help. Keep us updated, hope you feel better [ more ]
Scott F There are medications that can help resolve anal fissures (nitroglycerin, diltiazem, verapamil). Sitz baths can help. Keeping stool from getting too firm can help. Definitely ask your doctor. If what you have is external then it wouldn’t be an anal fissure, but your doctor might still be able to help. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Lower back & pelvic pain
RossiRossi
juliemk3 ❤️
Former Member Maybe you should get a second opinion from a gastro. [ more ]
grandmaof1 Do you think you could have cuffitis? I have those same issues when I have cuffitis. But I also have other issues at the same time. The urge to push and the pain in my rectal cuffitis. I have never felt this type of pain. It’s unreal. Let me know what you find out. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Miserable
G grandmaof1
tf Don't give up. It's a forever tweaking of the diet. Food & vitamins especially pro & prebiotics are so important. Exercise especially stretching & relaxation ones. No high impact. [ more ]
Former Member You are welcome! Keep posting!! Your posts help me [ more ]
skn69 I was about to say the same thing as Winterberry...what is your diet? What do you eat and when? What do you eat it with?? At what times? Are you more sedentary now with the confinement and Covid? Have you changed anything in your routines??? What you drink? Your meds???? Maybe we can help you to find a method that works for you and helps. Sharon [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bowel Movement Problem
BA Bill A
Former Member Oh dear, I had no idea you had no insurance, I am sorry to hear that! Insurance in the US is a definite must for us. I would suggest seeing a gastro anyway you can. [ more ]
Former Member Maybe you have a stricture??? I think you should see a gastro [ more ]
Bill A Thank You. With all the expertise on this site I hope others can offer advise. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Mayo for biofeedback? Which doc?
K Kh1988
Former Member I am glad you are great! I am too [ more ]
Kh1988 My bladder seems ok, no changes with it really. It’s mild/moderately prolapsed but has stayed pretty stable. Trying very hard to not strain and make it worse! Hope all is well with you [ more ]
Former Member You are welcome dear! I hope it works as it has worked for other people. Let me know how it goes How is your bladder??? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Nighttime j pouch leakage
KR Katie R
Scott F It’s much harder to find than it used to be, but I get VSL #3 DS at Sam’s Club pharmacy. I don’t know if it’s true nationally, but in Maryland the pharmacy has to serve you even if you’re not a member. Visbiome is almost identical (and is probably closest to the original VSL formula), and might possibly be easier to find. [ more ]
jeane Can you get Vsl3 ds any more? [ more ]
Scott F I use lots of VSL (4 DS packets per day). Since I'm never in remission, it's the best I can do. When I reduced the VSL last year I started to have symptoms, so I *think* the VSL lets me get by with a lower dose of antibiotics. The studies showed a stronger effect at preventing pouchitis than treating it, but I think it can help with both. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cuffitis maybe ? & traveling not near my drs
sofisofi
Former Member Yeah our periods can definitely be hard lol, NSAIDS are the only thing that works for me unfortunately. Yeah, I learned about the NSAID thing from watching J-pouch videos on YOUTUBE from Doctors and reading research online. Too bad we have to do all this research instead of our doctors telling us. If you are going to continue taking NSAIDS too then try taking it with a meal to lower risks. Sounds great about the Yogurt!!! I have been doing that for years! No problems Your welcome for everything [ more ]
sofi Oh wow, I know how that feels tho, I suffer from headaches and cramps with my period and NSAIDS are sometimes the only choice, I didn't know it could be so bad for the pouch, drs always say try not to take NSAIDs but don't specify why. Thanks for the input and will definitely add the yogurt to my daily diet! [ more ]
Former Member You are welcome my dear! And yeah definitely! NSAIDS can cause pouchitis unfortunately and it can irritate the pouch. Many doctors recommend we do not take it as a J-poucher. I take it anyway (OOPS LOL) NSAIDS are the only thing that works for my period cramps unfortunately. I know I need to look at other options though. In the past when I took NSAIDS, it made my pouch bleed a lot too. I take NSAIDS with a meal now or with food and I have not seen any blood since I have been doing that. I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Self dialet
GjergjGjergj
Gjergj Well tanks a lot for your input. My insurance will be takin off in a month or so. The straining has gone down a bit but my rectum is still ....idk rashed up from all the whipe. I might self dialet tonight but I don't feel like drinking...🥴😂 [ more ]
Scott F @Gjergj It sounds like you really need to visit a doctor, even though you don’t have insurance. The only way to get the right treatment is to first work out what is actually getting treated. Although open enrollment for subsidized insurance has closed, you may be eligible if you’ve lost a job or had other life events. Also, you can generally enroll in Medicaid at any time if your income qualifies. Good luck! [ more ]
Gjergj Yeah I have not got professional dialet since I was a teen. And I use to dialet regularly. Once or twice a month. But than I stopped because my gauges were only 14,15, and 16 and those maxed out. I had to use little effort to dialet. 2nd well I don't like sticking a metal rod in my ass one or twice a month. 🤦🏻‍♂️🤣 Anyway I haven't dialeted since idk a decade. I never really had issues. Until recently. So idk should I still dialet if I have Fissure, stricture, cuffis, pouctitus and or... [ more ]
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J-Pouch ForumsHelp! Need advice now!
BIBPAP and gas
DT Diane T.
Diane T. Thank you, Scott. I will try these ideas! First I will try the peanut butter. I liked to be as natural products before pharmaceutical. ‘Diane [ more ]
Scott F I started BiPAP a couple of years ago and haven’t experienced increased gas. If you’re swallowing air perhaps a chin strap would be worth a try. I can think of two possible causes of the nighttime accidents: the increased gas or the deeper (and better!) sleep. Do you take a bowel slower (Imodium or Lomotil) at bedtime? I’ve found Lomotil to be helpful. A small, fatty meal (like a spoonful of peanut butter) at bedtime can also slow things down. Good luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
1 month after jpouch connection
F Francesca2020
Former Member I am sorry that happened to you! Remain resilient and do not let nothing break you. [ more ]
Former Member Yeah my parents especially my mum are hypocrites.they tell me not to drink alcohol and how bad it is and even blamed my uc on it or for eating the wrong foods ,and eating too much fish even though when I was in hospital they went around my house and found the fridge full of veggies and no junk food. But when I went around their house before their four night holiday they were taking 24 beers and 4 bottles of wine. [ more ]
Former Member ❤️
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J-Pouch ForumsHelp! Need advice now!
metamucil
O ohblueboy1970
ytcrockpot I switch between using a liquid or applesauce. In liquid I use 1 heaping teaspoon in half the amount of liquid, usually Orange juice. I use the same amount in applesauce. Never had any issues with choking, as long as you drink it right away. I have had issues with it not working. That’s why I switch it up. [ more ]
CTBarrister I do something different. I do not take it with a lot of water- maybe 1 heaping teaspoon in 4 ounces water- but then I wash it down with 16-20 ounces of herbal tea in a giant mug. My objective is not to thicken stool. It's to clean out bacteria. That's the only objective that matters in my case. [ more ]
Scott F There’s been some disagreement about this, and some (but definitely not all) surgeons apparently tell their patients to use less water with Metamucil. I find it works just fine with the amount of water suggested on the package, and I think withholding water is about the worst method of thickening stool a J-poucher could consider. Your stool will fluctuate with your diet, regardless of how you use Metamucil. Here’s an earlier post along those lines: ... [ more ]
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bjohnson@j-pouch.org

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.

Forum moderator and advisor
Jan Dollar R.N.

 

 

 

 

General Disclaimer

 

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).

Confidentiality

Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.

 

CCFA

The Crohn's & Colitis Foundation of America,
Philadelphia, Delaware Valley chapter, is located at
521 Bustleton Pike, Feasterville, PA, 19053.
Tel: 215-396-9100


National CCFA headquarters are at,
396 Park Avenue South, 17th floor
New York, New York 10016-8804
Tel: 212-685-3440    800-343-3637

 

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