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J-Pouch ForumsHelp! Need advice now!
Possible pouchitis?
C Chayes
Jan Dollar As long as you have some other adult to help you with the kiddo if things spin out of control... Fingers crossed that this settles soon. I know what it is like to have things go seriously wrong in a short period of time. You may want to have MIL stay with you while your husband is out of town. Jan [ more ]
Chayes Unfortunately his trip has been scheduled for months and he can't postpone at this point. My mother in law is really good to help out. I'm going to an urgent care in a few united hopefully they will give me some antibiotics. I am not confident in the ER at this hospital or the hospitalist they have so I don't want to go that route just yet. I haven't been able to eat anything since Thursday [ more ]
Jan Dollar This sounds like a fast moving GI infection, because it came on so suddenly and severely. If viral, it has to run its course. If bacterial, antibiotics will help. Either way, it is essential to maintain your hydration. If you are not careful, you could land in the hospital. I'd get to urgent care and get on antibiotics right away. They can refer you to an ER GI if necessary. You may need IV fluids. Rotavirus usually only last a few days, but you don't know what this is. Any chance your... [ more ]
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J-Pouch ForumsPouchitis
On going pouchitis
JF john firth
AllyKat I was doing great then got the norovirus last week and my system is a mess. I can't get things under control. Entyvio targets the receptors in the gut that target viruses. Everyone else got better except me!�� I hope it's just time at this point. No I'm not taking any antibiotics but if this is not better by tomorrow I will have to see the GI next week. right now trying all the over the counter stuff I can get my hands on. Sorry your getting neurpathies with he bios. I could not take Remicade. [ more ]
ks1905 AllyKat, I took my first regular (non-loading dose) of Cimzia on the 23rd and it has seemed to put me into remission, no more hip-pain and much easier to empty my pouch without any diarrhea. Before this dose Cimzia really did nothing for me except for the side-effect of peripheral neuropathy (which wasn't as bad as prior neuropathies from other anti-tnfs). Are you taking any antibiotics with the Entyvio? [ more ]
AllyKat You too CT! Happy Holidays! [ more ]
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J-Pouch ForumsGeneral Discussion
UC again after 27 years with pouch ?
E Eitan
Mema 1 ❤️
Scott F Eitan, this doesn't need to be so complicated. Cuffitis isn't usually that hard to diagnose, though it can be difficult to treat. Next time your GI takes biopsies he needs to try to keep better track of where they come from, so rectal cuff biopsies don't get mixed up with pouch biopsies (though it can be hard to see the anastamosis after 27 years). If these pathology reports are either saying "colitis" or "pouchitis" (but not both in the same report), then I think the different pathologists... [ more ]
Eitan Scott hello Thanks a lot. The doctor think in two different directions: 1. That the surgeon kept part of the rectum (more than a cuff). 2. That J-pouch look like colonic tissue. The problem is that I need to take antibiotics for long periods (One month to 3 months) every few months. The GI doesn't like that some of the biopsies showed puchitis and some of them colitis. Eitan [ more ]
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J-Pouch ForumsGeneral Discussion
j. pouch surgeon recs
J JCAW
Muddygirl I guess I should have included that UNC Hospital is in Chapel Hill, NC. lol [ more ]
Muddygirl My trip to the emergency room in February 2015 turned into removal of my colon. I never had any UC symptoms so this was a shock to me. My final surgery for take down (jpouch) was 4/28/15 and feel I was blessed with having Dr. Reza Rahbar at UNC Hospital as my surgeon. I have had no real issues other than the normal things you can read on this site. Thus far, I have found that diet is key. [ more ]
Lambiepie Jcaw, sorry about your past GI experiences. I don't know if you are able and willing to make a trip to ny for surgery but my doc at Mt. Sinai did all four of my surgeries, laparoscopically and well. There's no situation that he hasn't seen. PM me if you'd like and I'll share my info. Congrats on your pregnancy! [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch/ostomy/migraine
LambiepieLambiepie
Lambiepie Thank you all for the suggestions that you've seen have success. I wish I could just supplement with whatever the heck I lost along with my colon but I guess it's not that simple [ more ]
roseviolet Hi, I just want to add that taking naps triggers migraines in me. I need to be on a regular sleep schedule with not too much or too little sleep and no napping. When I get a migraine, I take a 5 mg. compazine tablet and some Pepto Bismol. This combination works better for me than the Zomig prescribed by my doctor. I think the compazine works to relax the blood vessels/nerves and the Pepto Bismol has a substance that's also in aspirin. What ever you do, don't take NSAIDS. I made that mistake... [ more ]
AllyKat I have dealt with this since j pouch surgery. What has helped is along with chiropractor, cold laser therapy and Accupunture. When I feel the slightest bit of headache I put my feet in hot water and a cold pack on my head. My daughters mother in law swears by Botox. I would get them a few times a month, lasting 3 days. I can't imagine every day. My neuro told me that after menopause when your hormones are different you can be one of the lucky ones that get them but that they will go away... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Flagyl
S stellababy
Jan Dollar Ideally, it is best not to take any antibiotic daily for a number of reasons. One reason is bacterial resistance from daily exposure. Another reason is the potential for side effects. Usually side effects go away if you stop the drug. Resistance is more difficult and you can wind up reducing your options in the long run. My GI does not want me to stay on any one antibiotic without a break, and I agree with him. His and my preference is to rotate antibiotics and stay off them whenever I can. [ more ]
Scott F Your surgeon is unfortunately spouting nonsense. This is like saying that it's not a good idea to have surgery (which I doubt your surgeon would say). It's certainly true that taking Flagyl for an extended period carries some risks, and you're better off if you don't need it. If it's what enables you to live a full, active life, though, then it's completely appropriate until/unless side effects make it a problem. This is one of the reasons most folks are (IMO) probably better off switching... [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone else have an 'old' pouch?
TraceyHTraceyH
Angie Wilson Thanks for much for the kind words of encouragement. I have struggled with this for so long. I do not have UC or Crohns - FAP is what I have. So, I just don't know how to "prove" how this impacts my ability to work. I know I just need to go to GI person and other docs. and explain my position and see if they will do the paperwork. I feel like I'm begging. I have not worked full time in 7 years. I literally just quit one day and sort of had a breakdown. It really never occurred to me to try... [ more ]
Curlie54 Angie, IA with Maverick. My name is Curlie and I am 61 years old. However I was diagnosed with ulcerative colitis at age 18. I worked for 15- 20 years with the disease but at age 40 is became difficult for me to maintain a job. I was out on disability for 2-3 months at a time. My Doctor clearly told me that I should retire on disability at age 49. I felt the same as you that it was lazy and I would be giving up and considered disability to be like Welfare. When I was diagnosed with the... [ more ]
Rockwall63 ❤️
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J-Pouch ForumsGeneral Discussion
Diet/mushrooms
A atwoodt
ATXGuy This. I totally love them, but they are one of the few things that have consistently given me trouble. Post take down, my surgeon told me, "I can't tell you what to eat because everyone is different. If you want to try something new that you suspect might cause problems, try it in a small amount. You'll know in a few hours if it's a problem. But if something is problematic, try it again in a few months and see how you do as the system changes." It's been pretty solid advice, and I had a... [ more ]
bwils Hi, I am 4 months post surgery. I can eat pretty much any food but as other s have mentioned foods like corn or mushrooms come out the same way they went in. THe tips that have worked best for me are avoid drinking 30 minutes before or after meals, try to eat something biding with every meal and eat small quantities more times a day. The foods that do bother me are pasta, chocolate, anything spicy and sometimes dairy. These foods hurt coming out. I also have to be careful with some... [ more ]
Mhg26 Like others have mentioned, it depends on the individual which foods he or she may or may not tolerate. Foods I initially learned to avoid at all costs like the plague: celery, large servings of baked beans, undercooked brussel sprouts, and raw fruit skins (like those covering apples or peaches). The trick is to slowly introduce small quantities of new foods into your diet and see how they affect you. I'm happy to say that after 3.5 years with a JPouch I can pretty much eat whatever I want,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
weight
S stellababy
Mysticobra I never gained weight with a pouch. Well I did gain 15 of the 50 I lost. It took forever. Something was wrong. But I lost that too... Very fast. I have a ileo now and have been gaining at least 2 and a half pounds a week since. I even lost weight while in the hospital getting the removal. I was down to 128 pounds. Originally I started this from the pouch removal at 176 pounds. Last time I checked I was 136. I know I am over 140 by now. I can feel it. But I want to gain weight. I wish I could... [ more ]
stellababy Thanks [ more ]
Jan Dollar You can absorb nutrients if you have 30 minutes of transit time. Even if you are using the toilet right after a meal, it is not likely the food you just ate, but something you ate earlier. Eating just stimulates the gut to move to make room for more. Obviously, you are absorbing nutrients, or you would not be gaining weight. Suggestions? Eat less food if you want to lose weight. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Me and VSL#3
HockadooHockadoo
Andrea09 I just filled a 90 day double dose supply of VSL 3 DS, 180 packets. I've met my deductible so I paid nothing. Will pay around $100 for the next 90 day double dose supply. My GI prescribed it for me. I had my takedown three weeks ago [ more ]
Jan Dollar Thanks Scott. I mixed up the VSL#3 Junior with the capsules. The Junior Packet dose has twice as much as the capsules. Jan [ more ]
Scott F One minor correction: you have to take *8* capsules to equal one DS packet. [ more ]
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J-Pouch ForumsHelp! Need advice now!
ANASTAMOSIS TOO TIGHT
bederyparisbederyparis
Scott F A tight sphincter muscle is different from a stricture (narrowing) due to scar tissue. Strictures have to be dilated, often repeatedly, to get them to stay open. A too-tight sphincter would probably benefit from pelvic floor PT or maybe (I'm guessing now) biofeedback. Some folks might even try Botox (very carefully), and now I'm really guessing. [ more ]
bederyparis So what can you do? [ more ]
stellababy i have the same problem and my doctor told me sphincter muscle was to tight thats why i dont empty all the way its horrible [ more ]
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J-Pouch ForumsGeneral Discussion
The silver linings of our lives :)
A aliiien
rachelraven 1. Being 11 when this all started, and not remembering at all what it's like to have a normal poo. 2. Butts don't bother me one bit. 3. Became a nurse because of my journey/surgeries at age 19. No regrets there. Was briefly a nurse in a nursing home, then an oncology nurse for 3 years, now an ICU nurse for 17, and seriously, even you with the worst pouch isn't the worst thing I've seen. Today: 18 year old with total spinal cord dissection and paraplegia. My job is humbling. My perianal... [ more ]
Angie Wilson I thought of another one I have to share - finding this forum. It's made me feel so much less alone and also supported. Thank you to everyone who takes the time out of their busy lives to post. You guys really do make a difference. I've never done any social media (I have no facebook page!) - I just didn't want to get hooked on it. But, this forum has been a Godsend. Thanks to all. [ more ]
aka KNKLHEAD Mine is a simple one, and that is how fortunate I am that medicine has advanced so far -- giving doctors the ability to first SEE a cancerous tumor and then to have options that lead to a "normal" life! I am very thankful. How many years ago would a tumor go undiagnosed and led to an early death? [ more ]
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J-Pouch ForumsGeneral Discussion
Insurance not covering recent pouchoscopy??Advice please
M msh98991
Jeffsmom This happens all the time. Do not pay the bill. Call the doctor and speak to whoever does the coding for insurance and tell them what the insurance company said. They will change it. If the doctor codes it incorrectly, it's their problem not yours. I've gone through this so many times. Bet you have United, right? I fought this battle with them for years, funny since I don't have them anymore have not had an issue! But speak to the doctor's office. [ more ]
Angie Wilson I am so sorry you are going thru this. Do you like the doctor who did the scope? I would get through to him/her and see if that helps. The billing person won't like it, but I think you may be able to get the dr. to change coding to appropriate one. Call and insist you need to speak to doctor - you don't have to give a reason why - say, 'I'm a patient and I need to speak with him/her directly and I will wait for return call." I don't know what type of insurance you have, deductibles, etc. -... [ more ]
Jan Dollar Perhaps it changes depending on what state you are in, but for me and my family my pouch scope and their colonoscopies are not considered preventative (as in routine screening and covered 100%). My pouch scopes are coded as an office visit copay + lab copay (no sedation). Their colonoscopies are outpatient procedures and billed as that type of copay. The reason? We all have a current diagnosis and these scopes are part of monitoring and maintenance, not preventative/screening. The biller... [ more ]
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J-Pouch ForumsGeneral Discussion
hi guys
PouchomarxPouchomarx
Angie Wilson I agree with Scott - I think you will do great with the pouch when it's all said and done. You are in the thick of it - in the middle of it all right now. All kinds of unexpected things happen - but you get through them. But, when you are in the middle of it- it feels so frightening. You may be really surprised how well you do with your pouch! Hang in there! [ more ]
Scott F Every person who's posted about experiencing this has said that it didn't predict incontinence after takedown. The situation sounds like an uncomfortable nuisance, not cause for worry. [ more ]
Angie Wilson We are pulling for you, Poucho. So sorry you are dealing with this. [ more ]
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J-Pouch ForumsGeneral Discussion
Term Life Insurance ??
J juanaton
rustyskyline ❤️
Angie Wilson Agree with you both. I did get some insurance early on, but I've never been able to increase it. Worked in one state where job had a great policy that was just a benefit. The job was awful; the benefits were great. I wonder if you can just keep inquiring and meanwhile, maybe just save as much as you can - (obvious, I know) - as in - no new cars, etc. - that money goes into fund for your family? I look back at money I spent all my life on things I did not need and I'd have a fortune now if I... [ more ]
Scott F I agree, Jan. What's ironic is that a J-poucher's cancer risk (if it was for UC) is probably a bit lower than an otherwise healthy, coloned person, since a common cancer has been made very unlikely, but the insurance company hasn't a clue. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Partial blockage two years after j-pouch surgery
F feirs1
Scott F I think if you're feeling fine (and don't have a stricture) then food choices won't cause a blockage. If you have some discomfort, and have had trouble in the past, it might be wise to alter your food choices (and perhaps stop solid food altogether) until the discomfort passes. Blockages are not universal. Most J-pouches never get an obstruction. Once you know you're prone to them you have to adapt, but otherwise just eat food. [ more ]
deweyj that's interesting Scott didn't know adhesions kink or twist, but I guess that makes sense. I guess the question is how do you know its happening, and then avoid the culprit foods? I guess to my mind its not too different from contending with a stricture long term, but that's to my mind. Christine, my strictures were diagnosed during a pouchoscopy. MRE is also a reasonably good test or so ive heard, that might also be of help especially further up? [ more ]
christine m I was just in the hospital for the same thing. It often seems like I know more than the doctors in the ER. They are not familiar with the effects of a j-pouch. How are strictures diagnosed? [ more ]
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J-Pouch ForumsGeneral Discussion
j pouch
tftf
Scott F TF, you really just have to gather your strength to get it figured out. C. Diff can be very hard to get rid of - if you still have it, a stool transplant (FMT) might get rid of it once and for all. Without a diagnosis right now there's no positive path to offset the misery of feeling poorly. [ more ]
tf Thanks for your input. It's been 2 yrs 2 mo. since reversal. I don't know if I'm ready or if I could get through another surgery at this point. It's a big decision; one I was praying I didn't have to make. [ more ]
Mysticobra Getting to the end of your post where it said it was wearing you out. That was what made me decide to get rid of mine. It had wore me out. I felt worse after my colon removal and j pouch creation. I could not do it anymore. Seeing no improvement after two pus years I made the decision to have it removed and get the ileo. Not an easy decision to make either. Now it's not the right move for everyone it was definitely the right decision for me. I suffer no more. Richard. [ more ]
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J-Pouch ForumsGeneral Discussion
how does fiber work?
I iHateColitis
JP I have a j-pouch but don't use it because of complications so I have a loop ileo. It has been this way for almost 10 years. I do not normally eat too much food with fiber in it, i.e. pineapple, celery, etc. I received a Nutribullet (www. nutribullet .com) for Christmas and would like to know if this method of pulverising/extracting will tend to cause fiber blockages or if it is all right to use it. Jim [ more ]
Scott F In folks with colons, soluble fiber (like Metamucil) is chiefly used to treat constipation - the opposite of its purpose for J-pouchers. So it tends to thicken a J-poucher's loose output from the ileum (the end of the small intestine), but it helps hold water in the colon a create a softer consistency (for non-J-pouchers). Bowel slowers, like Imodium, just slow the movement of food residue from the stomach to the J-pouch. It will all eventially get there, though. I use Lomotil (another bowel... [ more ]
Jan Dollar Fiber absorbs fluid. It thickens stool, like cornstarch thickens pudding. Thicker stool is easier to retain and causes less burn. It does not slow the gut or reduce bowel movements at all. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
New Pouch
NS Nora S.
Angie Wilson GREAT news. 1-2 bms? I've never heard of this - but you are getting a more modern, better pouch I bet. This makes me so happy to hear for my neice and nephew!! I am sorry about the pain and loss of sleep - I was on good pain killers post op - I don't remember a lot of pain. But, that was just me. I am so, so happy you are getting a good result!!! [ more ]
Nora S. Well, a month post takedown and besides the pain in my side where the incision and stoma was, things are fantastic. I only go once, maybe twice a day and still no urgency. No leakages, even the burn is minimal!! I'm very pleased. Still lacking sleep and that's mainly from the pain, every movement is painful. I wake up each time I move in my sleep due to the pain. But the pouch is working great, I'm really happy about it. Life without the bag couldn't be better, I loathed that bag. Sleep is... [ more ]
Angie Wilson Glad to hear from both of you - may next year be easier for you both. May you not be in the hospital next year!! [ more ]
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J-Pouch ForumsHelp! Need advice now!
SEVERED INTERNAL ANAL SPHINCTER NERVE - IAS NOT WORKING - FEW SOLUTIONS BUT NEED MORE
TL TONY LAVICTOIRE
TONY LAVICTOIRE M2S, I was about to use the bidet after I last wrote a year ago but as my shoulder problem lessened I reintegrated the same technic - fist in the stomach while bending forward - with absolute success. You may want to try my technic using a semi deflated ball of some sort as per Sharon's advice. Tony [ more ]
skn69 Since your shoulder is sore and starting to wear from the years of pressure you might try keep a semi-deflated ball of some sorts (here the hand ball balls are about the right size, bigger than a baseball but smaller than a soccer ball...semi deflated so that you do not hurt yourself) and place it on your abdomen and lean forward...it would put enough pressure on the zone without actually cause bodily harm...I have a silicon yoga ball that is just slightly smaller than a soccer ball and is... [ more ]
Jan Dollar M2S, I see you've been doing biofeedback. I didn't know that when I suggested it in the other thread. Sometimes it works, sometimes not so much. If you have nerve damage then the longer it persists, the more likely it is to be permanent. That said, it can take a year for damaged nerves to heal. What is odd though is the fact that you had some bowel movements early on, then they stopped. Strange. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Tips for Passing Gas Post-Takedown
W wolfemf
Angie Wilson FANTASTIC NEWS!!!! [ more ]
wolfemf Thanks everyone for your responses. In the end they said it just took longer than usual for the bowel swelling to reduce and I'm out now, with a much easier time of passing gas. [ more ]
NYC Googler One more bit of advise. Do your best to relax the abdomen as much as possible. When I lie down on the floor and roll from one side to the other I can hear/feel the gas moving more easily as I relax. [ more ]
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J-Pouch ForumsGeneral Discussion
Iron Deficiency
G GraceB
Lucky3782 I'm taking this supplement http://www.amztk.com/iron-vitamins and I've seen amazing results with it and it didn't constipate me at all. I incorporated Iron rich foods into my diet like pomegranate, liver, and red meat. I was on a ton of supplements which I couldn't take due to the constipation issue until I came across this one. It has really helped me get my Iron levels up without leaving me constipated!! [ more ]
MicheladelfinaTX I've had chronically low hemoglobin counts since my colectomy; due to the absorption problems I've been getting IV infusions for the past 6 years for it. First I was on Venofer, but it was needed once a week to maintain my levels, which wasn't ideal. I switched to Feraheme about two years ago and now only need infusions about every two months to keep my counts in a semi-normal range. [ more ]
Lambiepie Someone here recommended liver pills, as they do not cause the constipation from regular iron. I ordered mine online. They're from Radiant Life. I also take Feosol iron recommended by my GI and sold in drugstores over the counter. My numbers, though not very high like before my UC, did go up. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anyone have a hard time taking iron?
N Nroley
Lucky3782 Constipation is very common when taking Iron supplements. I take this Iron http://www.amztk.com/iron-vitamins and I've seen amazing results. I don't know what they put inside but it didn't constipate me even one bit and they're extremely easy on the stomach. This also contains Vitamin C in it which is the only way Iron can absorb, that means that I did not have to add on any additional supplement. Whoever I recommended this Iron to has not been let down. This Iron has been a real blessing in... [ more ]
Pixie I take liquid iron called Palafer. I take it with a small amount of juice (for the vitamin C to help absorption). I usually take it in the morning, an hour before I eat. My doctor said to take it 1 hr before a meal or 2 hrs after a meal for maximum absorption. [ more ]
vanessavy Feosol is the easiest Iron to handle. I took it for years and no issues. I tried it recently and I get to constipated. With a BCIR I need to be runny so had to stop. I get infusions when needed now, usually once or twice a year. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Iron Anemia
C CedarsFam
Lucky3782 Anemia is extremely common after surgery I've been anemic myself. Iron supplements are known to constipate. I took this supplement http://www.amztk.com/iron-vitamins and I've seen amazing results! My Iron levels went up only after two weeks of taking this and what I liked best is that it didn't constipate me even one bit and was extremely easy on the stomach. Also this Iron contains Vitamin C in it which is the only way Iron can absorb, that means that I did not have to add on any additional... [ more ]
CedarsFam Daughter's blood work done again today...now her CRP is 103. Her stool did show inflammation. Suspecting pouchitis (4 months out of takedown surgery). Iron level up to 10.7. Still low but not as scary as 9. Began Flagyl and is being scoped on Fri. Endoscopy and Pouchoscopy....praying it's Pouchitis and not underlying Crohn's. [ more ]
liz11 oral iron will definitely slow down the guts... potentially leading to nausea and blockage. And many of us (with altered guts) cannot tolerate it at all. did they check her iron levels, iron stores - those need to be monitored on a very regular basis? If they are very low.. no way will oral iron fix that, even if she could tolerate it. Sounds like its time for you to get her to someone with expertise in this area - for me.. it used to be an internal medicine doc in my local IBD clinic that... [ more ]
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J-Pouch ForumsOstomy & Skin
Stoma retracted / closing over
M Mark01
Jan Dollar By "removing the pouch" I hope you mean reversing the ileostomy, NOT removing your j-pouch! However, if that is what you mean and you were disconnected due to your Crohn's (got that from your profile), then maybe a revision is what you do need. Your first post did not explain the reason for the diversion. If your end goal is to have the ileostomy permanently, then an end ileostomy is far better than the loop. You can have an end ileostomy and leave the j-pouch in place, but in the long run... [ more ]
Mark01 Yea I'm doing fine at the minute and I had the option of disconnect or removal before my last surgery and I chose disconnect because it was a smaller surgery with less risks. I have an appointment in 2 weeks so I'll say to him about removing the pouch and see What he thinks. Thanks for the reply [ more ]
Jan Dollar So, how are you doing with a basically fully functioning j-pouch? If you are OK, I don't see the point in revising the ileostomy in a month. Why not just have the take-down and be done with it? Seems like a potentially unnecessary surgery to redo it at this point. Retracting stomas are pretty common, but I don't know about them closing over. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Help, I think I'm losing my mind!!
Mema 1Mema 1
jodiloveslife (((hugs))) [ more ]
Angie Wilson Hey Dudge - Yes, lots of lows through the years - lots of highs and good times. I agree that one of the hardest things is that you really can't talk about it much - it does come off as complaining. I've had mine 30 years. It's gotten harder the last 7 or so years. More low times these past years - ya know - just a general tiredness of it all. I do not want to give up on living - but I'd by lying if I didn't at times think - this is not much of a life. I then beat myself up for feeling down... [ more ]
Dudge My thoughts and prayers are with you. I feel really low at the moment and unable to cope with my symptoms. You try to explain to your loved ones how these affect you but end up feeling like you are whining. Reading other people's posts and knowing there are others going through the same hard time you are going through and understand you, really does help. [ more ]
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J-Pouch ForumsGeneral Discussion
Jill Roberts IBD Center patients
AllyKatAllyKat
Jeffsmom Good for Dr. Bosworth! He is a great doctor and has an excellent bed side manager. He was very good to Jeffrey over the summer. I'm sorry to see him go. Now the search for a new GI. [ more ]
ks1905 There are two Dr. S's there, I see Dr. Steinlauf. He's a really good guy with a good bedside manor. He also accepts most insurance plans. I can usually see Dr. Steinlauf within 3-5 days of me calling to make an appointment. Looks like Dr. Bosworth got a nice promotion with more responsibilities http://www.med.nyu.edu/medicin...rth-join-nyu-langone [ more ]
Jeffsmom I got the same letter today. I like Bosworth as well but we have to stay within the cornell system. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Post j-pouch take down nausea
P Paul/Sue
Paul/Sue Thanks for the replies; much appreciated. [ more ]
marz Could be dehydration. Once you are dehydrated, it's very hard to catch up without an IV. Just had knee replacement surgery, and ended up in the ER 8 weeks later with dehydration and pouchitis. One dr told me anesthesia drys up your electrolytes. After 3 days of IV,s, i still have the nausea. If you google dehydration, insomnia is also a symptom. good luck, hope you feel better. [ more ]
Dudge Sounds like you might have an infection. I'd call your GP for some advice, don't continue to suffer. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-pouch prep for gastrografin enema
RegglesReggles
Angie Wilson I have had those done - but I feel so bad as I can't remember exact prep. Generally, my prep is one bottle of that liquid stuff you get in the aisle at CVS - it's a "laxative" - red liquid in a glass bottle - does not taste too bad. Bottom shelf at CVS. Some docs in different cities in which I have lived have had me do an enema. Most have not - just one bottle of that stuff. I am no a doctor - but I never have done the "regular" prep they tell people with colons to do since I've had my pouch... [ more ]
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J-Pouch ForumsGeneral Discussion
Protein Shakes
Joannab70Joannab70
Mysticobra Yes... I looked until I found something I liked. Of course I started with sample packs from the health store. The one I went to was more than happy to hand out samples. Just a suggestion. Good luck. Richard. [ more ]
Joannab70 Thank you all for your responses. I guess it will be trial and error until I find something that works for me. Happy Holidays! [ more ]
Emmyschmemmy I use BioChem 100% Whey Protein, found at Whole Foods. It was recommended to me by my nutritionist, who likes it for its high protein content (20g per serving). I find the vanilla flavor to be a delicious daily breakfast shake! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Confused...and getting worried
B Brooksy
Lambiepie Brooksy, I agree with he suggestion that it could be a blockage, especially with you burping and having no appetite. You burp when gas can't come out the back end and not wanting to eat is your body's way of telling you not to put anything else in because whatever's in there already can't get through. Output gets watery because it builds up behind the blockage. I've had blockages with an ostomy before and the symptoms are the same. While you're waiting for your appointment with your GP, try... [ more ]
Brooksy Thank you for the replies. I'm booked in to see my GP next week. Symptoms have improved marginally but things definitely don't feel right. I usually take Metamucil 2x day and it always bulks things up. Ever since this issue has come up Metamucil isn't doing a thing. Still very watery output with zero blood. The other odd thing is even if I have a bit of an appetite I eat half my meal and feel full usually followed by a bit of a nauseous type feeling. I never usually am "burpy" but since this... [ more ]
Angie Wilson So sorry - I agree with both of the above - I've had some blockages over the years and also stomach bugs. Symptoms are hard to figure out. Don't panic(easier to say than do, I know) and either see GP or go to ER and you may be happy how quickly this can be fixed. I usually wait too long and end up in the ER and they say, "why on earth didn't you come in sooner?" 30 years with the pouch...I just don't want to go to the ER - hate it, but sometimes, that's the only option. A solution has always... [ more ]
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J-Pouch ForumsMen's Health
Testosterone levels
D dhan88
Roland333 ok, you need a man's perspective who has a j pouch and is 7 years out exactly from this operation. it has caused major issues for me as well, but the opposite of what you are experiencing. It took only 2 weeks for my zeal to have sex come back, but my operation severely impeded my former abilities for an Erection, my first orgasm was painful all over down there, but as time progressed, it is now pleasurable. I have moved leaps and bounds since then, I have had to go and testosterone weekly... [ more ]
skn69 Ok, sorry...I didn't know. You are doing everything right...and no, this is not how it should be at the begining, middle or end of a marriage, no matter how young or old you are. You should not feel selfish...you are a normal, healthy woman who has desires and expectations...you are not being unreasonable. Like I said, reason has nothing to do with this. It is emotions, feelings and hormones. Hormone levels are probably playing a huge part of it... not sure to what degree...I have heard very... [ more ]
dhan88 Thanks for your post Sharon. I guess I should be a little more specific. My husband and I do still cuddle, we do still kiss, we do still give each other back rubs, etc...but it never leads to anything sexual. I have gotten to the point where I'm almost afraid to initiate anything sexual because I know more than likely I'll be turned down. It's upsetting to me that I can't even touch my husband in a sexual way. We are young, we have only been married for 4 months. Is this what I have to look... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
IVF
O Olivia_b
Lovin Life I ended up getting Essure placement for my hydro tubes after my first failed IVF treatment. The Essure has caused very painful periods, but after it was confirmed they successfully blocked my tubes, I had FET in July and I am currently 24 weeks pregnant. Not sure if implantation happened successfully because of the Essure or not, but I am definitely happy that this round of treatments worked. If you have any questions, feel free to ask, I am happy to share my experience. [ more ]
JillM I am so sorry that you lost your baby at 11 weeks. That is hard under any circumstances, but when you work so hard just to get pregnant it can feel especially cruel. I had four surgeries prior to my IVF experiences - i had my pouch removed and had a perm ileo at the time of conception. I had 2 fresh cycles and 1 frozen - got pregnant all three times but miscarried the frozen cycle early (we knew early on it was unlikely to be a successful pregnancy). One thing that I think was really helpful... [ more ]
Olivia_b Hey Ellipouch and Kate1026 thanks so much for your replies. I have had an HSG and it was clear, fluid travelled up tubes ok, but they've always said it doesn't show them right at the top of the tube, but does that rule out hydrosalpinx if any fluid went up there at all? They seem to think scarring might be impacting my ovaries for sure due to ovulation pain and lack of frequent ovulation. Re implantation we did had that, but the fetus wasn't ok so that's why I thought it might impact embryo... [ more ]
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J-Pouch ForumsGeneral Discussion
Do I have a J-Pouch
J JohnAH
Jan Dollar I would be extremely surprised if you lost your ileocecal valve in the take-down. It is where the appendix is (right lower quadrant, deep in the pelvis), so not where they'd be mobilizing your ileum for an ostomy. For those of us who had a total proctocolectomy, the ileocecal valve comes out with the colon (as does the appendix). Not much to add to Scott's description of psyllium/Metamucil. All fiber supplements absorb and hold water. If you are constipated, it draws water from the bowel... [ more ]
Scott F John, Jan noticed what I missed - that your surgeon called it a J-pouch. He knows what he did! Psyllium husks work mechanically to bulk up the stool. If someone is constipated, the addition of a psyllium slurry will soften the bricks to a consistency that can be passed. If the stool is liquid, though, psyllium will thicken it up. It doesn't matter much if it's Metamcil, Konsyl, or no-name. Othe soluble fibers also can help, and some people do better with them than psyllium. Examples include... [ more ]
JohnAH Jan and Roger, Thank you for the thoughtful and helpful feedback. As I read my post back to my wife, I found an error. I had rectal cancer, not have. The cancer was found via a routine colonoscopy in Aug 2014. Very low in the rectum. Stage 1. I had concurrent radiation and chemo in Fall 2014. The rectum and part of the sigmoid colon (a total of one foot) and 17 lymph nodes were removed in Feb this year. The biopsy showed no residual cancer. The chemo/rad had worked. The cancer had ever... [ more ]
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J-Pouch ForumsGeneral Discussion
New to group
J JohnnyRN
palm55152 hi it is nice to know you. this group has been a wonderful help to me. I had fap at age 40 jpouch now leaking so painful and quite depressing. I am now 70 and sometimes wonder how long I can live like this..Jan will be a wonderful help to you [ more ]
giuseppe talluto hi everyone I'm also new to the group and I also wish I had more info as well. I was diagnosed with UC back in 2010 and my dr who is amazing and one of the best started me on pretisione 60mg was what I was taken but once I started to drop in pills the flare ups were brutal. I had 95% of my colon removed and am living with the jpouch its been rough but I've gotten used to it of course their are many things that I can't enjoy for foods and a lot of cut out that's what's important is knowing... [ more ]
palm55152 can you take multivitamins and/or vit c while taking cipr/flagyl and how long is a course of c/f?? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anyone had this?
F Fosty
Angie Wilson Many times! 30 year poucher here. I think it's usually bile related. I never know for sure. Stay hydrated and use your judgement - if it dos not change within an amount of time YOU feel is ok, go to dr. or ER. I usually wait it out and it passes eventually. It still scares me a bit, but since it's happened off and on over the years and I'm still here, I don't freak out as much. Sometimes, no matter how hard I try to figure out what caused it, I can't. That's what drives me nuts about pouch -... [ more ]
rachelraven Bile can be green. Mine turns greenish when I'm pretty empty and down to bile, like after an illness. [ more ]
clwakley Have you drank any berry or blue colored beverage? My stool turns dark green when I drink blue Gatorade. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Numbness & Tingling Feet from Flagyl
CL Capt. Larry
Jan Dollar Not likely, since you are not currently taking it. It generally starts in the toes or fingers and resolves after you stop taking the Flagyl. It is a "pins and needles" sensation and possibly some numbness. The thigh is not terribly peripheral. Are you diabetic or been checked for diabetes recently? My husband used to get this sort of neuropathy that was attributed to his diabetes. Jan [ more ]
rustyskyline The other day, I started feeling a buzzing sensation in my lower thigh. Like the buzz you would feel if a cell phone were ringing. Is this peripheral neuropathy? I've had my pouch since '95 and have taken flagyl many times but at the moment I haven't taken in for about 2 months. There's no pain, just the weird buzzing sensation. [ more ]
L.DL Hi, I am presently going through the same problem. Was just reconnected on november3 2014, After dealing with diversion pouchitis for 2.5 years. Anyhow things we're going well up into 15 days after surgery. The wound where the ileostomy was started leaking and soon after opened up into a enturcutanous fistulas. Well i myself had been on antibiotic for 14 months going from cipro flagyl , then to avelox to doxttabs. Then they decided to put picc line to get it intervenorsly,stating that due to... [ more ]
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J-Pouch ForumsGeneral Discussion
Cough
G GraceB
GraceB Thanks Rachel and Scott That is what I thought at first , acid reflux but my gastro told me to see a lung specialist. I will try the acid pills. If that doesn't work I will mention this to my gastro about asthma. Thanks for your suggestions . Grace [ more ]
Scott F Grace, if your meds really haven't changed in 5 years then they most likely aren't responsible, and of course it's a terrible nuisance to stop them, even temporarily. Rachel reminded me that the easiest way to find out if it's silent reflux is to try an acid-blocker like Zantac (ranitidine) or Prilosec. I prefer Zantac because it's less trouble to stop taking it. You could try a significant dose of Zantac (150 mg twice a day) for a couple of weeks and see if you notice any improvement. [ more ]
rachelraven My mom developed a cough from gastric reflux/GERD. It was silent gastric reflux. I can't remember the exact med she was prescribed, it was one of the histamine blockers, though (like Pepcid, Zantac). Once she started taking the med, the cough subsided. Again, she had no symptoms of GERD up front, but this is what they diagnosed, and it went away after treatment. [ more ]
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J-Pouch ForumsGeneral Discussion
Post-op Takedown
KPKP
KP That's good to know. Thank you! It seems like things are getting better. [ more ]
deweyj good luck! recover well! [ more ]
Mhg26 Definitely normal. Takes time to get nice and acclimated to the new functioning of the pouch. Relax but make sure you get up and move around to keep things flowing smoothly in your body. And above all stay positive. [ more ]
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J-Pouch ForumsGeneral Discussion
What does cipro do?
Paul HPaul H
deweyj ive had my jpouch for decades, and thought I understood pouchitis, but I learned quite a bit reading under the Topic area here titled Pouchitis, specifically pouch guru Bo Shen's papers have informed me that it would seem pouchitis has a wide spectrum of manifestations. and yes I agree with the thought that some pouchitis might be a form of SIBO especially as it responds to abx. I would also concur if its responsive then it must be. lol. [ more ]
Paul H Thank you Scott & Jan. Have a Happy Christmas & healthy New Year. Paul [ more ]
Jan Dollar From what I've read, pouchitis symptoms that respond to antibiotics, but without evidence of pouchitis on scoping, is considered bacterial overgrowth. If you can get by just taking a course of Cipro from time to time, all the better. It is reasonably safe long term. Just be alert for side effects. My primary concern about taking the same antibiotic long term is bacterial resistance. I have had to take antibiotics enough this year that resistance is a concern of mine. Even though I take... [ 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.

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