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J-Pouch ForumsHelp! Need advice now!
J-Pouch and Crohn's: Next Steps?
N NumeroARO
CTBarrister JAS, I have rotated cipro with flagyl, xifaxin, amoxocillin and tinidizole and other antibiotics for 23 years. If you do not rotate from one to the other every few weeks and stay on cipro problems will develop based on my 23 years experience. The biggest problem is that cipro kills your skin bacteria and thus makes you vulnerable to fungal and viral infections, most frequently seen as yeast infections and warts. Your skin is your body's first layer of defense against infection. As my... [ more ]
JAS Hi NUmeroaro, I have been dealing with a very similar situation expect mine is ever more limited. I would call it a cuffitis rather than pouchitit however antibiotics work wonders for me as well. I got a J-pouch 20 years ago and had no issues for 10. Then I started experiencing a lot of tightness at the actual anastomoses connection. (But it took me years to figure out that was what was going on) In the meantime, I also developed 2 fistulas which can get inflamed a lot even though they drain... [ more ]
CTBarrister I have had a J Pouch for 25 years and have had chronic inflammation in Pouch for 23 years and above the Pouch for the last 10. I carry a tentative Crohn's diagnosis. Treatment with antibiotics for 23 years and added Remicade the last two, which has been effective in controlling but not eliminating the chronic inflammation. The Remicade has worked well in controlling the Pouch inflammation but not as well on inflammation above Pouch where there are scattered ulcerations. Why would you... [ more ]
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J-Pouch ForumsGeneral Discussion
Boxing with a jpouch
Y Ysharairi
Bobish As far as I know when people are stuck after intense training its often due to dehydration (salts sugars and liquid imbalance). Having a pouch would make you more prone to that.. maybe something to keep an eye on [ more ]
Former Member YSHARAIRI In regard to throwing up when sparing, are you throwing up due to exhaustion? Maybe since your illness, you've not reached the level of fitness you had before surgery but your determination believes you still have it and you're pushing yourself too hard. I guess " you got the heart but you ain't got the tools no more ! " [ more ]
Ysharairi Maybe i am pushing my body more than it can handle ,anyway thanks alot for the help sir i really appreciate it . take care [ more ]
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J-Pouch ForumsPouchitis
Couple questions in regards to pouchitis and VSL 3
T Twilight
Scott F I generally have well-managed pouchitis, but when the gas became a significant problem I was treated for SIBO successfully with doxycycline for a couple of months. [ more ]
Janiep I take VSL3 DS (double strength) and nooo it doesn't make me more... quite the opposite! Plus I do not take Flagyl... I take Cipro. Plus I also stay on 2 Lomotil along with Imodium... right there is my cocktail of choice that works for me. I really think it's trial and error and it took me awhile to get there. Also yes, I usually have to have a bowel movement when I pee and I just accept this new norm. I'm lucky to have the Jpouch rather than an Ileostomy. It all takes time! Janie [ more ]
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J-Pouch ForumsGeneral Discussion
need help understanding this from MRI ??
PouchomarxPouchomarx
Pouchomarx Heard back from Dr Shen in regards to this "wall thickening or mural hyperenhancement of the pouch"., and he stated its of no significance and nothing to be concerned about. [ more ]
Pouchomarx Jan I thought the same thing, that sentence is in same paragraph as "no" to everything else.... I emailed Shen to ask, but he doesn't reply to emails like he used to and his nurse is out for the next week. thanks, I am glad that there are no leaks or anything bad going on.. [ more ]
Jan Dollar These terms are generally associated with inflammatory conditions. It could be a transcription error (transcribing doctor said "no" but it was not picked up by the transcriber listening to the recording), or the degree was minimal or inconsiquential. The main thing to focus on is Dr. Shen's interpretation. I would presume that he actually looked at the images, not just the report. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Mouth ulcers/ Lichen planus
P Pear2393
Deedeeh no, i was plagued with them when i was initially diagnosed 20 years ago but once i was put on my meds they went away. i have had the pouch about 6 years ago and havent had anything like it again... .just the odd one every now and again. hope you find some help they can be so painful. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch, Weight Gain, & Chronic Fatigue
ShortaNdDeterminedShortaNdDetermined
DEE2015 GRANDMA WHO DID YOU SEE AT UM? [ more ]
grandmaof1 I will say one thing. I am tired of being exhausted. It sucks. Dr. at U of M said in time it will get better. Gosh I hope so. [ more ]
grandmaof1 I finally am somewhat happy with my weight. A year ago during the year long struggle to recover I weighed 105# at 4'10" and a half. I got to have that half. Sucks being so short. I have lost since my first surgery over 45lbs. I am now at 115. I don't want to gain anymore and I doubt I will. I still have issues trying to eat. I don't get it. I am always going to the bathroom. I want to stay where I am at. I finally look great. That is what keeps me going. I hate eating. But ya know you have to. [ more ]
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J-Pouch ForumsFAP Forum
Jpouch asking
BorislavBorislav
EricaLeeJpoucher When I eat eggs, it slows down my j pouch and makes my poop not that acidic. Maybe you could try eating eggs. Also for butt burn conditioner helps me. Once I put it on my butt I wait a few minutes or so and there's no pain or butt burn. [ more ]
Borislav nothing to slow doctors not give meds to drink. for slow only eat potatoes pizza chicken rice pasta [ more ]
Jan Dollar Beer and wine do not damage the pouch, but may cause increased diarrhea while you are adapting. What are you taking to slow your gut? Your frequency is high, even though you are in the adaptation period. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Am I Having Intermittent Partial Bowel Obstruction
Not your average gal!Not your average gal!
Aaro123 Couldn't agree more, Although the dissability side of my illness really effects the dating side because unfortunately not many women or men want a weakend non working guy/girl that now hates food, is very lethargic, in contant discomfort and owns the toilet, examples -Hey lets go to the restaurant where ill watch you eat a giant burger and chips, or lets go for a really long beach walk where ill probably dehydrate and need to know theres a toilet nearby, or any active stuff is out for me due... [ more ]
Maverick Plus Music and yoga and meditation help me. I also paint sometimes, too. Reading novels is a good escape if the pain is not so bad you can't ignore it. We all need to find ways to de-stress. It is essential to our mental (and physical) health. Thanks for the reminder, Not Your Average Gal. [ more ]
Not your average gal! Aaro123 and Maverick Plus: I appreciate what your doctor said about chronic pain and adhesions, Aaro123. We don't realize when we have the surgery, that although we alleviate one set of problems, we end up exchanging it for another set of problems that dog us for the rest of our lives. I look back and think about how trusting I was of the doctor's advice all the time and for all the surgeries I had. I might have done one or two differently. Some others literally saved my life. But what's... [ more ]
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J-Pouch ForumsGeneral Discussion
In ICU
skn69skn69
skn69 Thanks Jan, Am lining up appointments for all of my specialists as per orders, not taking the drugs (I was at my pharmacy yesterday...asked about the beta blockers...Told him my BP is normally 110/60 with 2 pots of coffee in me when stressed and he told me that I should keep far, far away from them)...I will end up passing out from low BP...my heart rate was a steady 60 with dips down to 50 and all other indicators (glucose 4.1, O2 sat at 90 (low but that's me) were great...They did... [ more ]
Jan Dollar Glad you are back home and survived all that medical attention. Sadly, sometimes we just never find out what happened. The good news is that we live through it and can resume our lives. Reminds me of the time a few years back that I was hospitalized for sepsis. No cause found. I am still here. Jan [ more ]
skn69 Thanks Jan, everyone. Friday morning at rounds we made an agreement; after the cardiac CT and the arteriography, if all was clear then I could escape.They wanted to give me a weekend pass and get me back Sunday night but I wasn't having it. The results were perfect, nothing to report and the Halter results came in just in time...there were a couple of Asystoles during the night but that's it. So they released me on my own recognizance! My exit package includes the report and a prescription... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Scope finally showed cuffitis and not pouchitst need ideas for pain relief...
H Halo52208
Scott F Halo, some folks liked the description of pouch advancement that I posted here: https://www.j-pouch.org/topic/g...3#456871565303403423 [ more ]
Halo52208 Thanks Jan DDS what is pouch advancement surgery? [ more ]
dds I've had chronic cuffitis since i got my pouch 7 years ago. I have been scoped and my pouch is perfect but the cuff is covered in ulcers. I've tried suppositories, creams,foams and nothing worked so now I take two tylenol three 3times a day, bentyl, cipro,flagyl, lomotil, and, Entyvio. I still have diarrhea like ten times a day. I'm putting off pouch advancement surgery for as long as I can.My one step surgery was hell and I'm not ready to go through hell again. [ more ]
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J-Pouch ForumsHelp! Need advice now!
To fight or not?
H Halo52208
Scott F Halo, the only price that matters is what your insurance co-pay will cost, not what other people's insurers are paying. I'd suggest giving your insurance company a call. Also, the Humira web site points to a savings card that can lower the price to as little as $5/month. https://www.humira.com/humira-...lete/ongoing-support In my experience these savings cards for expensive medications work very, very well. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stoma discoloration- SCARED!
M Moe
Moe Ya I did see my surgeon and she said it was likely due to the stoma getting kinked ad squeezed. But she said since I'm going to have j pouch surgery soon she wouldn't operate on it. So, for now, it looks fine. [ more ]
Sunflower70 I noticed that my stoma had varying colors. When it was darker, it did worry me too but the ostomy nurse said it looked fine. One thing that I read might have an effect is if you put the wafer on too tightly. If the stoma is getting squeezed a little, maybe that could reduce the blood supply. I'm not sure why it would be Chrohn's. I didn't know that was even possible in a stoma. (But I had colitis, so I'm not up on the Chrohn's info.) If you're still worried, you could go see the ostomy... [ more ]
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J-Pouch ForumsFAP Forum
Dilemma choosing where to have surgery in UK.
E Evan
BillV Evan, I was diagnosed with FAP in 1981 and was one of the first to have J pouch surgery at the Mayo Clinic in Rochester, Minnesota. I am not familiar with surgeons in the UK other than Dr. Ed Wescott in London who has just started doing BCIR surgery. I believe he also does J pouches. I met him at the Quality Life Association’s annual conference in Florida last fall where I was a speaker. He is a fine surgeon who is very patient friendly. You should have your surgery performed by a surgeon... [ more ]
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J-Pouch ForumsPouchitis
Possible to eliminate pouchitis without antibiotics?
A asdfqwer
Jan Dollar I agree with CT, with an exception. Are you absolutely certain you have pouchitis? If it has not been verified, you may well have some other issue like IPS or bacterial overgrowth. Those may not get worse without medical treatment and are likely safe to "live with" or attempt control with dietary changes or supplements. Symptoms of pouchitis can be vague, but generally do not come and go. Jan [ more ]
CTBarrister The answer to your questions is yes and yes. It will not get better and will get worse in all likelihood. It will be a slow deterioration and your urgency/frequency will increase and then when you finally get the proper treatment you should have had in the first place (antibiotics and/or Remicade) it will be harder to treat. i have treated Pouch inflammation with antibiotics for 23 years, and since 2015 Remicade as well. I am good and none the worse from the treatment. [ more ]
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J-Pouch ForumsGeneral Discussion
"Megapouch" term
K Kushami
TE Marie My j-pouch was enlarged too, which probably factored into it's failure. (The main problem was my cuff.) [ more ]
Kushami That's very interesting to hear, tulsamom. Unfortunately my whole pouch has enlarged, which is one of the reasons I can't have revision surgery. My surgeon also said they don't know why it happens. He was involved in taking biopsies from enlarged pouches to see if there were any detectable changes or causes, but the muscle tissue appeared normal when it was analysed. I'm glad to hear your pouch could be fixed :-) [ more ]
Kushami Thanks, TE Marie. I will read up on prolapses. Should have mentioned that I am in Australia, so unfortunately can't take advantage of second opinions. The problem was revealed by a CAT scan, and I'm happy with the diagnosis. Was just wondering whether anyone else had the same thing. It's sometimes called "floppy pouch" too, although that can mean a pouch that isn't emptying well for whatever reason (not necessarily due to the bowel-wall muscles giving out). [ more ]
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J-Pouch ForumsGeneral Discussion
Can I see a chiropractor with an ileostomy?
M Moe
Kushami Can I sound a note of caution? There is a risk of adverse outcomes from chiropractic neck manipulations, but because chiropractors are not doctors, they are not required to warn patients about this. You know how before a medical treatment, your doctor tells you all the potential risks and things that could go wrong to obtain your informed consent? Well, chiropractors aren't legally required to do that, and they aren't subject to the same scrutiny or penalties as medical doctors when... [ more ]
Moe Thank you. [ more ]
Halo52208 Moe, When I had just had my surgery and couldn't lay on my stomach, the chiro adjusted me laying on my back using different way to adjust my back. Then to adjust my neck he had me sit in a chair. So you can be adjusted, just let the chiro know. Good luck�� [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch surgery
S Startoverlife
Startoverlife I wish I could take a leave from work. I'll have to figure that part out. I have been trying to save some while I'm able to work with being on prednisone but it's not much. I need to be back making some money by the 4 to 6 week after the first surgery. Then maybe I can save more before the second one. I have developed small holes around my anus as well so I hope those will be taken care of and heal up properly in that time as well. I have had times when I went to the hospital where I would... [ more ]
Winterberry I took a leave from work, but I felt comfortable working at 8 or 9 months. At 5 months or so after takedown I was able to hold on comfortably. But I still made sure I knew where the restrooms were, and always kept a packet of baby wipes or moist paper towels when out of the house. You won't have the terrible urgency of flaring UC, and you will have some warning, a feeling of slight pressure in the back end. Then you have to make your way to a restroom. I always listened to the warning sign... [ more ]
Startoverlife I've avoided all those types of food for a long time now anyway so that doesn't bother me. I deliver pizza right now. How long did it take until you could go back to work? Is it easier to hold it in if you need the bathroom? For quite a while I have maybe 30 seconds to a minute to find a bathroom most of the time unless I'm sitting. Then I can hold it a little longer. I also use to lift weights. Is that still possible later down the road? I know you said you don't lift heavy things. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Is it possible to have internal hemorrhoids with a J-Pouch?
L 10larry10
Scott F You can have internal hemorrhoids in the anal canal. Painful (and painless) lumps are frequently hemorrhoids. I had one a month or two ago, and it's gone now. Painful lumps can also be other things, like abscesses and fistulae. A warm sitz bath would be fine for any of these things. You get to decide if/when to ask your doctor to take a look. I was lucky enough to have an appointment scheduled for other reasons (though the other reasons weren't lucky at all). [ more ]
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J-Pouch ForumsGeneral Discussion
Iowa City Doctor
K katey
katey Thank you, I had my surgery years ago at Mayo and I need someone for some problems I've had over the past few years. I know Mayo is great but Iowa City is so much closer, so I am looking around there. [ more ]
Halo52208 I see Dr. Polyak at the U of I. He's really nice. I like him. [ more ]
TE Marie FYI - I live in Iowa and went to the Mayo Clinic for 2nd opinions and treatment. My Des Moines GI referred me there vs IA City. [ more ]
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J-Pouch ForumsGeneral Discussion
What to expect 4 months post j pouch
SB Sarah Brown
Sunflower70 I agree with Scott. I had similar thing going on about 3-4 months after reconnection and it turned out to be mild pouchitis. It was tolerable but I could tell that something was off. I started the prescription dose VSL3 and used Rowasa enemas and it got better in about 3-4 weeks. Definitely consult with a GI to see if they want to treat it as pouchitis or do a scope. If you aren't taking VSL3, I really recommend it. I was taking the pills but it wasn't enough. The packets with the higher... [ more ]
Scott F This could be a recurrence of pouchitis, but the blood more often suggests cuffitis. Can you get scheduled for a pouchoscopy, or at least a competent rectal exam by a pouch-knowledgeable gastroenterologist or your surgeon? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Ulcers found in pouch today. My doctor sent off biopsies
BH Becky Heredia
CTBarrister I have had scattered uocerations in the J Pouch for 23 years. I initially treated with rotating antibiotics and since late 2015 with Remicade. The Remicade significantly improved inflammation in the J Pouch. My scope this past Monday May 22 showed the Pouch continues to look good but there are uocerations in the ileum above the J Pouch which have been more resistant to Remicade. This pattern has been observed for a while now. However despite the chronic inflammation my quality of life is... [ more ]
jeane Yes that is where mine are...... [ more ]
Pouchomarx I had my pouchoscopy by DR SHEN a few months after takedown, and he also stated I had ulcers at the suture line as well, he stated this is very "normal". I have my annual pouchoscopy scheduled for July so we will see [ more ]
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J-Pouch ForumsFAP Forum
Pain have where was the ileostomy and dirrhea
BorislavBorislav
Borislav the scar is red i think scar is sometimes hot sometimes normal no is not bleeding [ more ]
Winterberry Hello, Borislav. Sometimes I can have a mild pain at my old ileostomy site. I am 1 year after reversal. It is healed completely, only a light purple colour, but if I move a certain way it can give me a sharp pain even now. I think it is my scar tissue or adhesions. You are early days so your old ostomy site inside is still healing. Some people heal faster than others. So much happened at the ostomy site so it may take more time for scar tissue to soften and the swelling to settle down. My... [ more ]
Winterberry Hello, Borislav. The burning acid that you are feeling is from bile. Everyone produces bile. J pouchers suffer more burning from the bile because we do not have the big colon to hold / neutralize the bile acids and we go to the bathroom more than people who have a colon. The job now is find a way to make your stools more solid, and not so many times, so it does not burn so much. Food choices will help, and so will Immodium. Are you able to see or talk to your family doctor about pouchitis? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Has anyone had a Fecal Transplant to treat C Diff?
E elgeco
Scott F Fecal transplants are the most effective treatment for C. diff, and a great idea if Vancomycin has failed to clear it up adequately. [ more ]
elgeco Do you have a blockage? C-Diff makes it hard for me to empty. I used to think it was a mechanical problem like a structure or a blockage but I never actually had a blockage and the vancomycin made that problem of emptying go away. Have you had c-diff or a blockage before? I think if you have a blockage you need to get that taken care of ASAP. Did they talk to you about a fecal transplant? [ more ]
Worried in Wi I had c-diff a month ago. I was in the hospital two days and came home on Vancomycin and just finished it last week. The problem I am having now is getting my pouch to empty. I started getting more fiber in and drinking more water and it hasn't helped me at all. I called my doctor this morning and I am l am still waiting for him to return my call. I am very worried about what they can do. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Do I have a vaginal fistula?
S sally85
Katerina Can anyone help? I had my takedown surgery 2 weeks ago, I feel well, I can walk, eat reasonably and the only pain I get is butt burn and the occasional spasm. However, just now I held in the urge to open my bowels on the second time trying to hold it in a litlle came out onto the pad I was wearing but at the front (vagina). I'm lead to believe this little bit has come out of my vagina. Is this due to a fistula? Something else? Or is it because I didn't open my bowels when I needed to and... [ more ]
Sylv Hi after reading these post I'm also extremely worried I've had my pouch 5 years now and I'm suffering from cuffitis but I also have a lot of vaginal gas and what I assumed discharge but kept thinking it was feces and thought I was going mad as this can't be right ! Is it ?? [ more ]
SuziQ Hi, I'm also late on this thread but came across it and wondering if the issue outlined above (fecal matter passing through to the vagina) is happening in my case? Over the last few months I've noticed an odour (that could almost be fecal matter) emitting from the wrong end! There are no other symptoms, no itching, burning or odd discharge. I have spotting in between periods...but that's something I've experienced for a while now so not unusual for me. My pouch is 25 years old so wondering... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Extreme diarrhea today
SW Sharon W
Sharon W Thanks...once I got off my feet I began to feel better. Drinking water and I think I just got a bug. Just so uncontrolled when I am now used to it being controlled. And the fact I was in public really jarred me and of course embarrassed me. Thanks for replying Scott. [ more ]
Scott F It sure sounds like an intestinal bug, most likely, or food poisoning. The key is to stay hydrated by almost any means. Good luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Self-dilation side effects
LB Larry B
10larry10 I am self-dilating once a week and am fine, now. You are the one I'm concerned about. Get in and get dilated as soon as you can! [ more ]
jeane Worried, Could your meds be causing your pouch problems? I know how sick you can get when pouch will not empty. I went through two weeks of torture before I was dilated. I should have gone to ER well before my planned procedure. Be very careful. My surgeon indicated I could have perforated my pouch in that condition. Have you tried miralax? I'm sorry you are experiencing this. [ more ]
10larry10 You probably just need to be dilated.get in as soon as you can! If they can't see you this week, go to the ER. Just make sure you haven't eaten for 8 hours. [ more ]
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J-Pouch ForumsGeneral Discussion
Upset stomach
C CandiceT
CandiceT Thank you very much. It seems like there is a tummy bug in the office which I might have picked up. I am waiting on tests to come back to find out if I am celiac or not. But I have been vary careful with my food. [ more ]
Scott F Candicet, I'd guess that your upset stomach issues may have nothing to do with your J-pouch. Perhaps you have another food sensitivity to track down, or untreated gastritis, as a couple of possibilities. And since "upset stomach" can mean many different things, these are just guesses. Lomotil is safer in pregnancy than Imodium, according to the information available, at least until the third trimester. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Almost 1 year
BritBrat88BritBrat88
TE Marie Scott is right about there sounds like multiple problems. I am just adding my bit about adhesions. I had extensive lysing of my adhesions and recognize part of your problems as adhesion related. The feeling of a baby moving could be due to your waste getting held up by adhesions/scarring. I have 2 kids and know what you mean. Please get a second opinion and I would start with a good GI. [ more ]
Scott F Hi, Brit. I'm sorry you're going through this! I think you may have a couple of things going on. The simplest one to try, if you haven't already, is to treat this like pouchitis and see if a course of Cipro helps. When it works it often works very quickly. Pouchitis isn't always obvious on visual inspection with a scope. I'd guess that you may also have significant adhesions, because of your bowel perforation. These aren't really pouch-related, but they can make the passage of stuff through... [ more ]
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J-Pouch ForumsPouchitis
Cipro vs. Amox w/ Flagyl: efficacy vs. side effects?
rlbliferlblife
rlblife THANKS!!! [ more ]
Scott F Hi, RLB. I'm sorry you didn't tolerate the Cipro. It's the only single antibiotic that worked for me. There are others worth trying though, singly and, if necessary, in combination. Xifaxan (rifaxamin) helps lots of folks and tends to stay in the gut, causing few systemic side effects. It's expensive as heck, though. Tindamax and Augmentin are two others. I definitely stay on VSL while on antibiotics (I'm actually on them full-time, Cipro + Flagyl). It makes a real difference, I think. I... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Vaginal delivery with j pouch and epidural
LG little greeny
colitisfree Congratulations!!! I am so happy for you!! May you enjoy your new little one with a good health! I am looking for an ob in NYC. [ more ]
little greeny I am using an OB in Toronto, her name is Dr. Maxwell. My delivery ended up going well (was yesterday). They did a very controlled delivery with an epidural so I didn't have to push. I ended up without tearing. That being said I did have incontinence during the epidural but the nurse was good at cleaning me up [ more ]
colitisfree May I ask which ob doctor you are using? [ more ]
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J-Pouch ForumsK-Pouch Korner
Anyone use this catheter?
vanessavyvanessavy
LuckyLady Try www.Torbot.com A great customer oriented company that often provides free samples. Also got curved ones (there is a list of international distributors on this site) from: http://www.wellspect.com/Produ.../Ileostomy-catheters Pamela [ more ]
michael s I use the weber and Judd catheter I think it is the best on the market. But it is expensive. It will last a long time [ more ]
Adroen Thanks Sharon, Have ordered some from Stomabags.com. Never ordered through them before, so crossing my fingers it works out. They carried both the Medena and the Marlen lines. Got some of the Marlen curved 30Fr, as they look like the best bet for me, but I wanted to try some of the others too for when the time comes to use them. I browsed a lot of places before that, but only a few ship outside the USA. The Weber-and-Judd for example was only available through merchants that shipped within... [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch back to ostomy
Ashley22Ashley22
Crystal<3 ❤️
Jason351 Thanks Richard, I really appreciate your comments, the surgeon said he will discuss my options after he goes in with the scope next Tuesday so I will have to until then. Cheers, Jason [ more ]
RDSmith Hi Jason Sorry to hear you're in the wars mate, but looks like one decision is out of your hands. I would strongly recommend that you have the little bugger removed. As one who had that decision taken out of my hands, I have to deal with daily output from my JPouch even though it is disconnected. Every 6 weeks or so I have to flush it out with a lovely Fleet enema, which brings back the pain from before my surgery. My surgeon was reluctant to remove it once he saw all of the adhesions to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
?pouch removal
winter wishwinter wish
winter wish Had an EUA and Botox last week. There is a lot of spasm, sobotox is to help with that. Surgeon said there was a chronic ulceration at/near anastmosis that is traumatic and might not heal? He didn't recommend anything for it. I'm in a lot of pain�� [ more ]
winter wish I was up late last night reading a book called the Plant paradox, it's an interesting read.. [ more ]
TimD62 ❤️
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J-Pouch ForumsGeneral Discussion
Metamucil vs. Konsyl
Scott FScott F
Former Member I don't remember hearing about Konsyl before. I never heard of it. I'm open to trying it. Metamucil is god awful stuff when it comes to taste. It's overpriced too even when I buy it as a storebrand at Walmart. Taking it in capsule form never works too, unless maybe you swallowed 50 of them. [ more ]
Scott F Aussie, I wouldn't suggest mixing psyllium into hot food. Among other things, it's likely to sit too long after getting wet. [ more ]
Aussie Can powdered Konsyl be mixed into morning oatmeal or other hot foods? [ more ]
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J-Pouch ForumsGeneral Discussion
pain in legs
L LoveLife
13 Years & Counting Are you taking a TNF blocker? It could be from that. [ more ]
skn69 Yes and no...(other than the result of an accident last year) I usually get pain if I am very dehydrated...that is a tell for me or if my legs feel as if they weigh 1000lbs each...or swelling due to salt abuse, toxicity or overuse (I walk a lot)...also I get pain from inactivity...yes, not moving and not walking makes things worse for me...getting up from bed or the sofa after long periods of inactivity is really hard...but once I have been walking for a while things tend to loosen up and... [ more ]
LoveLife Wow Leanne! I hope your new knees are good. Pouchomax, I think it can be difficult to determine when to see a doctor or not. So many small pains here and there but generally I am living a good and happy life [ more ]
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J-Pouch ForumsGeneral Discussion
Capsule scopi
C Cath75
Cath75 I will get the results 29/5. Kind of knew it never would take as much as 10 hours, but very surprised it just took 3,5. Especially since I have a good period.. thank you for sharing Leanne! [ more ]
Leannern I had it and it went through me so fast that they couldn't get a good reading. Hope yours works out! [ more ]
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J-Pouch ForumsGeneral Discussion
Prolapse with erosion
JS Jackie S
Jackie S Thank you Winterberry and Te Mari, I appreciate both your responses. Jackie [ more ]
Winterberry Hi, JackieS. If you are okay eating chicken, try a piece of chicken roasted or baked your favourite way is good protein and digestible. Eggs, scrambled with turmeric sprinkled on top while cooking (helps with inflammation). Firm tofu added to smoothies. If you decide to eat beans, chickpeas, lentil, etc., for protein remember it might be irritating because of the skins on each bean (beans are also carbs, but high in protein and filling). If you love butter, try replacing it with just-ripe... [ more ]
TE Marie If you count calories or Weight Watcher points while adding protein and decreasing carbs you should be okay with your dieting. The Greek yogurt I eat has 22% of the daily required protein and the protein powder I use in smoothies furnishes 43% of the dally requirement. You don't have to eat meat to add protein. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Severe ulcers in j pouch with reduced urgency
N Nish123
CTBarrister Nish123, i have had scattered uocerations and inflammation chronically in both J Pouch and ileum above the Pouch. It's considered Crohn's but the treatment is basically the same, antibiotics and Biologics, first antibiotics and then Biologics depending on the degree of response to treatment. I am at the moment on a rotating Regimen of Cipro/Flagyl and Xifaxin and Tinidizole plus infused with Remicade 900 mg every 6 weeks now. BTW I have had inflammation chronically since 1994 so it can be... [ more ]
jeane I would contact GI or surgeon if not passing anything from pouch. [ more ]
Nish123 I had ulcerative colitis . That was the reason for colectomy . I don't feel any urge and no discomfort at this time. It feels like as if my pouch is sleeping . No sensation no urge . [ more ]
See all 4 replies...
J-Pouch ForumsOstomy & Skin
Feeling Down 16 months in ):
F Fosty
Lambiepie I agree that these prices are exorbitant. Perhaps they know we have so few options? I went to Kmart and bought larger sized stretchy underwear. I wear my bag at an angle, so they keep everything covered and held in place nicely. $12.99 for three pairs! [ more ]
Mysticobra No kidding. 30 bucks for a peice of spandex is ridiculous. Even on sale 22 is too much. 10 bucks at the most. Seems like we are taken advantage of. So I will try a five dollar tube top next time. I don't use the pocket anyways. Richard. [ more ]
TE Marie Ostomy secrets has sales all the time and they are still expensive. I wait for the sales. Thanks for the Canadian website Winterberry. Boo hoo their prices are just as high as Ostomy Secrets. [ more ]
See all 18 replies...
J-Pouch ForumsOstomy & Skin
New stoma healing question - freaking out!
C Chute
TE Marie I had the same thing and it looks horrible. I used the "crusting" technique. On dry skin put on stoma powder then put on Barrier film. I use Cavilon no sting barrier. Then repeat this on the problem area. (I thought you might have these on hand." [ more ]
JB788 I had something like this happen when I had my loop illeostomy. My doctor used some kind of medical glue and bunched the skin around the stoma to adhere it after surgery. He didn't use stitches like I had for my end illeostomy. I was home a week and a half and the skin separated from the stoma so you could kind I'd see inside. I panicked and sent a pic to my wound nurse. Every time I changed my appliance it seemed worse. She called and I went in. She told me not to panick and it would heal... [ more ]
Mysticobra I think what Chute means by the way I'm reading into it is not necessarily the shrinking of the stoma but where the stoma is supposed to be attached to the skin. If I'm wrong. And I usually am way off. Lol. My stoma never goes so far in. It protrudes probably close to half an inch. Which I am very thankful for. Works like a charm. And I do smush that little bugger all the time. But it functions well. Further out the better. Flush stoma are difficult. It has not healed yet it doesn't seem. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Cleveland Clinic Doctors
rubberstamped2003rubberstamped2003
rubberstamped2003 Sorry JFill21 I am not familiar with Dr. Hull. Hopefully, you will find someone on this site who can help. RACH123, Yes, I know the feeling of "let's get this done, and move on" but, if the Docs are thinking about two surgeries, it is beneficial for your body to rest and adjust before moving along to the next surgery. You will have to find a way to let go, relax, and trust the Doc at the helm (easier said, than done.) There are not too many situations the Docs have not encountered in there... [ more ]
Pilot Debby The CC has great doctors, it does not matter if a few have left or not. I think the issue people are having is they just are not their doctor. Everyone thinks their doctor is the best and has the most experience but the reality is they are all very well trained, you will be fine no matter who you pick. [ more ]
Rach123 ❤️
See all 19 replies...
J-Pouch ForumsGeneral Discussion
Local surgeon vs Cleveland Clinic
J Jfill21
Rach123 Thanks for both responses. Unfortunately my insurance covers only nyc. Both doctors I mentioned above though are from Cleveland clinic. They moved to nyc. Someone on another site mentioned she had a direct attachment to rectum done by Dr. Hull and it went well. [ more ]
Jfill21 My CC consultation next month is confirmed with Dr. Tracy Hull. Anyone a patient or been a patient of hers? She's been a staff colorectal surgeon there since 1993 and is current section chief of IBD within the department. [ more ]
CTB23 ❤️
See all 13 replies...
J-Pouch ForumsGeneral Discussion
Questran - Cholestyramine Use -Success
CL Capt. Larry
rlblife Starting Questran today- hoping it helps with chronic pouchistis. what should I be "ready" for in terms of side effects other than the heartburn? Do you take it with meals? THANKS [ more ]
AnnieK Questran was RX'd for me a few months ago. At first it seemed kinda great but it gives me such awful heartburn that lasts for hours despite crunching some Tums and Tagamet Anyone else have this? The most relief from the intractable diarrhea that I seem to have to accept for life comes from Bentyl. It's an anti-spasmodic that I take 30 minutes before meals and at bedtime. [ more ]
Subzeromambo works great for me too! [ more ]
See all 3 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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