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J-Pouch ForumsGeneral Discussion
How much can you drink in a sitting?
IsolationaryIsolationary
Spooky It really varies. With a loop ileo, you'll find that things go straight through you regardless. My output with the loop was always very frequent and very watery. Prior to having the loop I had an end ileo for about 2 years. The output was much thicker and more infrequent. Nobody told me there'd be such a drastic difference! LOL The point is, you do need to drink, even more so with the loop because you are potentially losing water through the ileo. You could keep a bottle with you and sip... [ more ]
Jan Dollar It gets better with time, as your small bowel adapts to absorb more water and take on the role of the colon. But, it takes time; 6-12 months. Even an end ileostomy will eventually adapt to absorb more water. But yes, the key is to sip throughout the day, not slam back large amounts of fluids. This is especially true in the first six months post op while you are adapting. Another suggestion is to not drink too much fliuds with your meals, so that your food will not "flush" out of your gut too... [ more ]
CTBarrister I have a J Pouch, not an ileostomy. However since having a J Pouch I need to drink regularly to stay hydrated. I drink 17 ounces of coffee in the morning with breakfast and then 12 ounces of Red Roobois tea every 2 hours during the day. I always take bottled water with me when on the road. [ more ]
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J-Pouch ForumsGeneral Discussion
thinking about getting surgery for uc
jeremiah johnsonjeremiah johnson
Scott F If you really feel like you need a phone call, let us know (though don't post your phone # in an open forum). Arrangements can be made through a private dialogue. [ more ]
rachelraven I consider mine a success. I had zero issues for 21 years, then developed an abscess/fistula. However, my pouch itself is still looking good. The bottom anastomosis narrows at times, necessitating dilations in the past 2 years, but overall, again, the pouch itself has always looked pretty good and functioned quite well. For twenty years, I was the poster child for excellence after J pouch surgery. [ more ]
TE Marie You have found the right place to ask questions. Something like 95% of j-pouchers don't have problems. This is a good place to ask questions about the surgeries. People generally go to support groups for guidance and after recovery don't frequent groups as often. There are many here who have recovered and lend their support for others that have questions. Ask a question or ten and get your discussion started [ more ]
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J-Pouch ForumsGeneral Discussion
corned beef
U UjohnjC
Scott F Remember that cabbage can be quite gassy, if that gives you issues. It's a perfect use of Beano. [ more ]
Jan Dollar I just ate my corned beef round dinner. Cooked it in the crock pot. Don't care much for the boiled potaoes/carrots/cabbage, so I roasted red potatoes, baby carrots and onions. We have it every year. No problems, including the Reuben sandwiches and hash from leftovers. Happy St. Pat's! Jan [ more ]
CTBarrister I am not a big fan of corned beef, but I have eaten it and had no problems. Typically I only have it around this time of year. As a kid growing up with UC, I ate it a lot as part of what is called "New England Dinner" - corned beef stewed in a pot with potatoes, carrots, and cabbage, and served with mustard. Funny story about corned beef: Many years ago I visited Schwartz's- the internationally famous purveyor of smoked meat in Montreal. I ordered and ate their famous smoked meat sandwich. [ more ]
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J-Pouch ForumsGeneral Discussion
Stabbing pain
J JOHNDUB
msh98991 ❤️
Jan Dollar There is no "time" for adhesions to become apparent. They form within the first few weeks of surgery, but they can cause symptoms at any time. Your intestines are in constant motion and all it takes for them to try to zig when they are tied into a zag position. I doubt that anything you take orally will have any impact one way or the other. But, just know that without a colon, there is no colon to "cleanse." No harm either, just saying... Now, if you are talking about a few days of a partial... [ more ]
rachelraven My pain was more than a decade post op, but my growing belly was the culprit. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Surgery, again
JeffsmomJeffsmom
Jeffsmom Sharon, you are such a sweetheart. I'm doing ok. I'm exhausted, as expected. Jeff keeps wanting me to spend the night but there is no place to sleep. I have a bad back, like up all, I guess, so it makes resting in 2 chairs painful. And besides, Chatty Kathy keeps yapping all night long! But I left him tonight and came home. He is doing much better. Pain is being managed so I don't have to worry about that thankfully. Now I'm getting ready for bed and should be asleep in 10 minutes! [ more ]
skn69 Jeff"s Mom, How are You doing? In all of this craziness and pain and frustration you are not mentionning how you are holding up? You fought the good war, hopefully won the latest battle and will win the rest...but are you eating properly? Getting enough supplements? Taking good care of yourself? I know that in times like these you do not even figure yourself into the equation but you need some rest, some healthy nutrition and some healing laughter. (try calling a girlfriend?) You sound like... [ more ]
rachelraven I'm used to surgeon's taking away IV meds at least a day or two before folks go home, since of course there will be no access to things like IV Dilaudid when you go home. They generally at least like 24 hours of oral meds, to see how things go on them. Oral meds offer much longer periods of pain control vs IV, which act quickly, but are short acting. It's why with a PCA (pump), a patient may be dosing themselves every 8-10 minutes with IV meds, vs oral being, generally, 4-6 hours. [ more ]
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J-Pouch ForumsGeneral Discussion
Is it really Butt Burn.... ?
FM Former Member
Former Member My point was..... rather than what we think it maybe..... is the itching, discomfort and/or pain, actually caused by tiny tears around or with the anus. From own experince, I'm guessing, a tiny open wound, scratch like, maybe more than one or many in such an area and exposed to the bile acids, either most of the day and during a BM, could be the actually cause of the dreaded butt burn.... rather than the diaper rash type skin condition I read of. When I've experienced the itching and burning... [ more ]
CeeeeCeeee My surgeon told me that extreme itching in or around the anal opening is caused by seeping or leaking of liquid b.m. even if we don't see it. Keeping the area clean and as dry as possible seems to relieve the problem. After cleaning the area, using a barrier cream of choice helps to keep the area clean and safe from contact with liquidy effluent. Being vigilant helps. [ more ]
Former Member If referring to me, no... no infection and no pouch or cuffitis; all is well, I was just sharing my thoughts and exploring opinions. [ more ]
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J-Pouch ForumsGeneral Discussion
How fast does a stricture develop?
dgtracydgtracy
dgtracy Thanks for the replies. I'm Def having smaller symptoms not as bad as before but it's there. I already have an email into surgeon so well see soon [ more ]
ks1905 I felt great after my dilation but about 10-14 days later small symptoms started to come back but not nearly as bad as before. I'm going for another dilation on Friday. My last one was about 2 months ago. Things are good with medications but I want to get off the Entocort and Flagyl. [ more ]
mgmt10 I had one that developed three weeks after takedown surgery. Had it dilated and it developed again about a month after that. Had four more dilations a month or so apart and then it finally stayed open. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Birth Control pill linked to greater risk of Crohns?
SpookySpooky
rachelraven And Crohn's, while "one" disease name, manifests in many different ways itself, moreso than with UC, which is still never exactly the same person to person, but less erratic than Crohn's disease. [ more ]
Spooky Yes, sorry; I should have mentioned that in my original post: it causes a threefold increase in individuals who are already at risk genetically, but does not appear to directly cause Crohns. And yes, I also found it interesting that there was no apparent correlation between UC and the pill. (When I read the article headline, I was of course all ready to jump at that as a potential trigger in my case, since I developed acute UC at age 26, after I'd been taking the pill for a few years.). [ more ]
Jan Dollar I actually have been a participant in the Nurses Health Study since it began in 1976 (I guess nurses are good at returning survey responses). Lots of long term data have been collected over the decades. I am currently in a side study about gestational diabetes and long term diabetes risk. Anyway, I digress. The main point I got from this article was specifically that birth control pills did not cause Crohn's, but were more like a trigger for those genetically susceptible. I found it... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Struggling badly post surgery
HaidalynHaidalyn
rebel Hi Haidalyn How are you doing with the Imodium now? Is food still passing through you? [ more ]
rebel https://www.j-pouch.org/pages/illustrated-pouch Just as a general comment, people with Ulcerative Colitis, Crohn's Disease etc, need to be proactive, bearing in mind that when your suffering the symptoms, your busy fighting a battle to keep well. If you've got family and friends, they can help hugely with all sorts of things, emotional support, research, advice etc. Unfortunately, relying on professionals is 'hit' and 'miss', also, these are conditions that need to be managed daily, they... [ more ]
Jeffsmom I thought the ilium was the right side of the large intestine . Thank you for the information. You would think I would know this stuff! [ more ]
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J-Pouch ForumsGeneral Discussion
Pain -and lump?- at anus. Should I be concerned?
GN Gentle Now
Jan Dollar It is a matter of timing in regard to what happen when. Hot soaks help hasten the "ripening" process, where the abscess is walled off and the infection is in a pocket that can be drained. If it comes to the surface, breaks open, and drsins on its own, you need to keep up the soaks in order to keep it open and draining. surgical incision is mot always necessary. It just depends on how large and/or deep it is. You also do not want it to sit without drainage too long, or it can lead to a... [ more ]
Gentle Now Thank you all again. I have been reading all the other posts about abscesses people have experienced. It seems that, yes, no one has posted that antibiotics alone took care of things, nor is there ever just a simple resolution . :-/. a little good news? Antibiotics seems to have helped my frequency! I am 8 weeks out and have been going 15 times a day, but surgeon was not suspecting pouchitis, just thinking my body was slow to adapt. So I am really glad that this got me some antibiotics to... [ more ]
Jan Dollar Yeah, antibiotics won't heal an abscess, but can help keep it localized and heal any local cellulitis. Watch for fever and increasing pain. Hot sitz baths should help get this to improve. Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
leakage and sex
KeepMovinOnKeepMovinOn
Spunkycat Thanks, all of you..., I was just about to forget about this guy, thinking about what his reaction might be when the time is right for me to disclose..., we've had a few long phone conversations in which we very lightly touched on the subject of sex. It only came up because he told me he does "date" and do I or will I mind. I said no because we are not committed to one another, however, if or when the time were to come where our relationship became physical, then, yes, I'd mind sleeping with... [ more ]
skn69 Spunky Cat, Welcome aboard...this is a wonderful ship and we are a very welcoming crew! I have a k pouch (same as the j pouch but with an abdominal stoma outlet with a 1 way anti-reflux valve). I've been pretty much sick my whole life and have had more surgeries than you have fingers and toes...the scars to match and a ton of physical and mental damage to go right along with it all. I have dealt with dating in puberty, adolecence, young adulthood and pre-menopause. There is no easy age, no... [ more ]
Spunkycat ❤️
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J-Pouch ForumsHelp! Need advice now!
revised ileostomy surgery
tftf
Jeffsmom Has anyone checked for an abscess and fistulia? They are extremely painful [ more ]
Jan Dollar It is unclear to me what surgery you are talking about. Are referring to a j-pouch revision, such as pouch advancement, where the remaining rectal cuff is removed? If cuffitis is the source of your rectal pain, then pouch advancement might be the answer. jan [ more ]
Scott F Your anemia is likely the cause of your fatigue, and it it should be treatable, regardless of what's causing it. Has your doc told you what's causing it? The pain can be a trickier matter. Is it improving at all, week to week or month to month? Has you doc suggested a possible cause? Some people see improvements out to 18 months (or even more) after takedown, but I can't tell if that's a reasonable expectation for you. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Excruciating periods and J-Pouch
C CariCianci
GinLyn Wow, it is incredible to see how different our bodies are! I am sorry, Annikki, to hear of your experience; mine is just the opposite. Cari, I don't know if your bad periods are due to the pouch or if you have a problem or just heavy periods, but you should definitely get checked out by a gynecologist ASAP. Get a new one if the other didn't listen or investigate further. I suffered heavy -- and I mean HEAVY -- periods all my life with horrible cramping. Not to mention lasting 7-10 days and... [ more ]
Annikki my periods got worse after my second child. I had an uterine ablation last February and now have the worse cramps of my life. It leads to more liquidy output and more trips to the bathroom. I was was under the understanding that people with jpouchs should no use NSAIDs including ibuprofen. The he only thing I can take is Tylenol as I am allergic to codeine. [ more ]
Jaypea Has anybody worked you up for endometriosis? You might was to see a gynecologist [ more ]
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J-Pouch ForumsHelp! Need advice now!
Leaking down under
BranchyBranchy
CeeeeCeeee Try not to be concerned about waiting a bit before you have your takedown. Because I felt so well with my ileostomy, I chose to wait a full year before I had the takedown. For me, this turned out to be wonderful because my takedown was easy and I had a very smooth adjustment to using my new "plumbing"! It sounds like you are doing very well. Best wishes! [ more ]
D.D. Originally Posted by Jan Dollar: Sounds like normal activity. There is mucous shedding constantly and many people have difficulty controlling it. It is not a sign of future continence with the j-pouch. Oh, and do not be alarmed or surprised if some stool bypasses your ileostomy and makes it to your pouch. Jan Hi Jan, I just joined this group to ask the very question that you just addressed in your last sentence. Lately I have let my ileostomy fill up more during the night instead of getting... [ more ]
Jan Dollar I applaud you for your patience, as you wait for others with more dire need for surgery. Your day will come and I am sure it will go well for you! Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Still waking up and night and having accidents
JG Julie Gonzalez
Virdent Have you tried any experiments with diet? I swear my pouch loves me and I sleep best whenever I get one of those bbq chickens from cosco or wherever, nibble on that for dinner with a veggie side or potatoes of some sort. No wheat, no dairy, hey give it a shot one night and see how she sleeps, it can do no harm. =) I am sure those on a more paleo type diet have less cases of pouchitis and over all better pouch health as it seems excess carbs really do fuel bad bacteria in us and we're in a... [ more ]
Julie Gonzalez Thank you Scott and Aragón she is also on Imodium and Benefiber I'm going to increase the amount of Imodium. Right now she takes one in the morning, afternoon, and, evening then two at night. Hopefully this will help her she recently had a doctors visit and they but her on Flagyl and then the VSL#3DS Three time a day. Also I did a type o her surgery was on October 2014 not December. Thank you once again. [ more ]
aragorn My son was the same age with j pouch, and very slowly reduced accidents/leakage over about 18 months. We got up to 12 immodium per day (3 pills 4x per day), with no ill effects. You can get piles of it cheaply online in generics. He also did well with probiotics, and the VSL is supposed to be the best for that. We made pullups part of our normal life, and he doesn't seem to have ill effects from that. He functions normally now (4 years later), with very occasional accidents. [ more ]
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J-Pouch ForumsGeneral Discussion
Worth Worrying About or Not?
D DeathStalker
DeathStalker Well, it looks like it only occurs when I strain down there. Had those two episodes and then gone. Nothing. I'm guessing perhaps an internal hemorrhoid or something related. Major relief. I will mention it though next time I speak with my surgeon just in case. [ more ]
canlafre I am curious about how you are feeling? [ more ]
DeathStalker Odd thing is that I've used the restroom twice tonight and no blood. Not a drop. This is odd because with UC, when I bled, I bled continuously. With this latest episode, it's very sporadic. Either way, like mgmt10 said, probably can't hurt to just get checked out to be safe [ more ]
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J-Pouch ForumsHelp! Need advice now!
Leakage of stool and blood
C canlafre
Jan Dollar Bleeding is usually a sign of cuffitis. It is very possible there is pouchitis and cuffitis simultaneously. My cuffitis responded to Flagyl, but the bleeding and urgency returned over and over again. I wound up using Canasa for a couple of months, overlapping with Flagyl for a week. I then transitioned to oral sulfasalazine for maintenance. That worked well for about 15 years, before I developed a more chronic/recurring pouchitis. Jan [ more ]
canlafre So the flagyl they gave me worked.but last week I was having pouchitis symptoms. So I called right away and got put on another dose of flagyl. Felt great 24 hours later. Now the bleeding came back this am and I'm still on my latest treatment of flagyl. Not sure why. Gonna call in am. [ more ]
canlafre The nurse called back and she thinks the next step should be antibiotics. She thinks its a severe case of pouchitis. But she had to check with the Dr first. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Tinchure of morphine
A abillusmc
Bill A The use of morphine sulphate has been working. At 71 I am interested in what works. My surgeon is in favor of its use but the GI department is at odds. That have nothing to offer which will work but suggest I have chrons in the upper esophagus to srgure I should resort to a bag. It appears I am in a losing battle [ more ]
clouseau Another option is to try LDN, low dose naltrexone which is what Dr Siebecker the SIBO specialist recommended to me last week, others on the SCD yahoo site are using for pouchitis-SIBO symptoms. You will need an RX, a place in FL I spoke with 2 days ago specializes in it, Skips RX www.skipspharmacy.com . My local integrated MD recommended it as well and that company. [ more ]
Scott F Morphine would be an unusual choice for intractable diarrhea, and unusual choices make people nervous with narcotics, since the DEA is a nasty and merciless watchdog. The most "standard" opiate treatment for diarrhea that can't be controlled by Lomotil and symptom control measures (e.g. Metamucil to bulk and thicken the stool), as well as proper diagnosis and treatment of the cause, (such as pouchitis), is DTO (deodorized tincture of opium). It can be hard to find a doctor knowledgable... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Surgery Consult
Andy1993Andy1993
aragorn J pouch gave my son his life back. He still goes 2-5 times a day, but it's not urgent, certainly nothing like his UC. He plays soccer, tennis, etc., almost anything he wants. Learning to manage the leaking was big, but the only drugs he takes are immodium and a bit of iron. This has been 4 years. [ more ]
EBeck82 I was in your shoes at age 27. It took 12 months for me to heal completely and get control of my BMs again. I'm 5 years out now and haven't had a problem in years until today. I am a social drinker, and alcohol does cause more urgency and liquid stools, but it's very possible for me to drink in moderation. Good luck! [ more ]
Jeffsmom Andrew, so sorry to ready about your difficulties. You are far too young. My son is 24 years old, you may wish to speak with him. Let me and I will arrange it. He was diagnosed at the age of 6 with UC. Last June he had his lg intestine completely removed. Spent the summer on a temporary Illiostomy. We had a lot of problems with the appliances and the bag leaking, not getting the wafer on correctly, and lots of pain. In September, he had his take down. All seemed to go well. He was going to... [ more ]
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J-Pouch ForumsGeneral Discussion
Gravity Smavity..... Gotta push!
MysticobraMysticobra
ccanepa456 This is exactly my problem as well. Even if its diarrhea I have to strain. I do have pouchitis and have been on cipro, but it started right after my takedown and has never gone away. My pouchitis is also handled with the cipro, so I rarely have diarrhea and don't take immodium either. So frustrating and has led to hemorrhoids and fissures for me! [ more ]
Ljz I am exactly one year post take down and have output all across the board- sometimes liquid, some formed, and lots in between. I do find when I have to push formed stool out that using my little squirt bottle - holds about 12 oz., with very warm water helps a lot. I have to refill it sometimes 3-4 times and usually wipe in between but it definitely help me release more stool without pushing as much. I'm sure a bidet could do same thing but this little bottle has made huge difference for me. [ more ]
Mark SD I've had the same issue since my 1992 j-pouch surgery and it's never been determined why. I was warned prior to the surgery that this could happen. I don't need to push too hard to get going but I always need to push. [ more ]
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J-Pouch ForumsPouchitis
Why now?
Mamacakes2015Mamacakes2015
Jan Dollar I guess the real question is, why not. Studies have shown that the risk of pouchitis increases with time. So, it is not YOUR age, but the age of your pouch that makes a difference. I had my first bout of pouchitis about 5-6 years post op. Then had the occasional relapse that responded well to Flagyl. After 19 years I am getting more frequent and persistent cases. I try using probiotics between antibiotics, with varying results. Reducing carbs have been helpful too. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
urinating
U UjohnjC
Shainy I had this problem after the jpouch surgery (stage 2) and also at reversal (step 3) after my j pouch surgery I suffered urinary retention and had to self catheterise for a few weeks. my surgeon didn't know why this was happening and neither did the urologist but it cleared up and I was able to pee normally again. recently I had the reversal and again I found it hard to pee. I think, in my case, its due to the pelvic floor seizing up from the trauma of the surgery and then at takedown because... [ more ]
TG Hi, In the initial stages (Post take down) it's all about training your muscle - this [ link http://urology.ucla.edu/workfi...xercises_for_Men.pdf ] exercise is for prostate associated issues but it all helps towards the same goal. It takes time. Hope this is something to go on. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Mechanical implant for controlling bowel movements?
T TCM
TCM Thank you Scott, The Cipro is for pouchitis. But based on your comments and another comment from Nancy, I will discuss antibiotics with my surgeon. I am not quite finished with the Cipro prescription but have had night time accidents during the time I have been taking it. So I suspect that will not be a solution but it is still with investigating. Nancy also mentioned using antibiotics, canasa and anucort suppositories. I'm not familiar with the last two but will check them out. I greatly... [ more ]
TCM Originally Posted by Scott F: Terry- I unfortunaltely have to take antibiotics all the time. If I don't, I will have nighttime accidents. This is antibiotic-dependent pouchitis, and while I wish I didn't have it, I'm lucky that the antibiotics work just fine for me. This is why I'm not sure I understand your answer to my question about whether the Cipro stopped the nighttime accidents. You answered "the 500mg Cipro I'm taking is for pouchitis, and it stopped it in its tracks." I'm not sure... [ more ]
TCM Thank you Nancy. I will look into the possibility of cuffitis. I have heard of it but don't recall being checked for it. My surgeon has been terrific and very thorough but I will ask. I am not familiar with canasa or anucort suppositories, so perhaps there is a gem there. I really do get along very well except for this issue. And I travel a lot on business, so am always taking extra protection, bed pads, etc with me. I envy your limited accidents! Thanks again. Terry [ more ]
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J-Pouch ForumsHelp! Need advice now!
Partial Obstruction?
S Solomin
Solomin Hi Ric, Dilation is basically stretching of the muscles to allow for an opening. There are risks involved with dilation - you can become incontinent (too much stretching) and you can get a perforation (low risk of happening). Some people have used for BOTOX for this problem. It relaxes the muscles but it is not permanent as it can last anywhere from 3-6 months. This way one does not experience permanent incontinence. As for the parasites -is it possible that the results (negative) were not... [ more ]
Ric in TX My sigmoid colon was removed along with the rectum, leaving the sphincter intact and somewhat functional (in June 2010), I had radiation and chemo. Since my ileostomy reversal in January 2011, I have struggled EVERY DAY to eliminate. I can’t move the stool along unless I administer multiple enemas with a bulb rectal syringe. I would say that 80% of the bathroom trips result in nothing out (except for translucent, wormlike objects which may be parasites. I had a test for parasites that was... [ more ]
Jan Dollar Sounds like you could have pouchitis. Maybe an anal stricture too. Do you have any antibiotics? You may want to call or email your doc. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Post operative blockages
S srf
Jan Dollar Get up and walk as much as possible. Reduce the use of opiates as much as possible. Make sure they are monitoring your serum potassium levels (low potassium contributes to post op ileus). And of course, avoid abdominal surgery as much as possible! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Constant Anal Pain post op
IsolationaryIsolationary
Isolationary I had myself checked out after my pain got so bad I was writhing. It turned out I had an abcess from a leaky pouch that was pressed against my spine. I'm on heavy antibiotics now--Ciprofloxacin and flagyl(sp?)--as well as hydromorphone for the pain. I'm feeling much better now. [ more ]
Shainy I had quite a bit of anal discomfort after j pouch surgery. its quite common. I can't remember when exactly it stopped but I think it was uncomfortable for a good 4 to 5 weeks. when I had the 8 week mri pouchogram a small sinus was detected. im not sure if that was the cause of the pain but anyway it all cleared it in time and I had takedown last week (9 months after the j pouch surgery) [ more ]
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J-Pouch ForumsGeneral Discussion
How many out there got a J-Pouch only to find out later you have Crohn's?
E Evie
Evie Thanks for your responses ladies.....my son has Ulcerative Colitis as well....he was diagnosed at 7 years old and is now 15. His GI said sometime ago that she felt like he had Crohn's from the signs she saw in his stomach, but we have no "official diagnosis" as of yet. None of the Biologics worked for him, so we went back to the basics....Methotrexate. It finally got him in remission. I guess it was what his body needed. I have been on every imaginable drug for my Ankylosing Spondylitis and... [ more ]
rachelraven Similar to GinLyn here. I felt "off" all of 2012, and kept saying to the hubby that I wondered if I had developed Crohn's. Odd, I know, to say "gut feelings," but there they were. I felt like I had physically when in a UC flare: constant low-grade fevers, malaise, bloating. It wasn't so much that my pouch was bad or off, it was a full general sense thing. Then December 2012, I developed a perianal abscess that became a fistula. Also get strictures and narrowing at the lower anastomosis these... [ more ]
GinLyn Sort of. I have recently been reclassified as Crohn's (within the past 18 months), but there have not been any definitive signs of ulcerations in my small intestine. The reclassification is based on the number of very bad fistulas I have had over the past 5 years and a couple of other (self-reported) symptomatic things. My surgeon decided to reclassify me so that I would get faster attention when seeing new specialists & in case of emergencies -- plus her gut feeling that it was some... [ more ]
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J-Pouch ForumsGeneral Discussion
Taking VSL#3 DS On The Road
CTBarristerCTBarrister
CTBarrister So I found that Scott's suggestion worked really well. I packed ice cubes in a one gallon ziplock bag and placed them on top of the VSL#3 DS packets in my Artic Zone thermal bag and then stuffed the bag in my suitcase around 4:15 am. I left for Hartford around 4:30 am. Flight took off around 7:30 am and we landed in Tampa at 10:30 am. When I unpacked in Bradenton at around 12:30 pm the ice had barely melted, this despite 84 degree Fahrenheit temperatures in Bradenton at the time. I then... [ more ]
ks1905 You could also just buy the standard VSL-3 in Tampa for about $55 from a pharmacy. This way you don't have the hassle of transporting it. Up the dose of the standard VSL to the DS strength and you'll use up all of the probiotic while you are there for the short vacation. [ more ]
CTBarrister OK, thanks for the tip. I figured they will ask about the ice pack. Maybe it makes more sense to load some ice cubes in a ziploc. I will do that instead. [ more ]
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J-Pouch ForumsGeneral Discussion
Finding a Doctor in another country?
J Jpouch8888
GinLyn First step is to speak with your employer about recommendations and how to navigate the insurance system. Next step(s) would be to research through the insurance company their policies, providers, etc. And also check out sites such as Expatica for help and recommendations specific to your area. As soon as you can, go on google and search for local expat groups; also try FB. These groups are INVALUABLE in navigating your new country! We live in the Netherlands, so the system is different, but... [ more ]
CeeeeCeeee You might try contacting the Cleveland Clinic to see if they have the names of any specialists who live/work in the Frankfurt area and are familiar with J-pouches, etc. Prior to a trip to Asia I contacted a specialist at a major IBD center in California and elicited the names of colorectal surgeons in the area to which I was going to travel.....just in case I needed someone. Best wishes! [ more ]
Jeffsmom Perhaps speak with HR. you should have no problem finding quality doctors in Germany. If it's a new job with a completely new employer, than speaking to HR not such a good idea. Try google. You should be able to find a gastro person near where you are going. And if the information is not in English use google translate. Good luck with all! [ more ]
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J-Pouch ForumsGeneral Discussion
Long-term low-residue diet is going to kill me!
GinLynGinLyn
GinLyn Aw, man, I am SO sorry that I didn't get to reply earlier! Too, too much going on right now. Thank you all for your suggestions. Sharon, what you say about the differences with "real" low-residue diets makes sense. I guess mine is more the "so bland you will die of boredom" diet. I have gotten a sort of routine down that is survivable, but I really don't like it. Still cannot have more than 3 very small servings of ANY time of fruit/veg a day or I pay for it, big time. It stinks. Someone... [ more ]
Spooky Hi GinLyn, Sorry to hear about your predicament! I'm on a somewhat modified diet myself currently for adhesions. You sound like you have quite a few more restrictions than I do, but I do have a few suggestions. Can you eat avocados? The reason I ask is that they are great sources of omega-3 and potassium, are low residue, and are quite filling on their own. I usually mash or puree it up to make guacamole - which of course gives you a lot of flavour. I will often take an avocado, make guac,... [ more ]
n/a Sorry to hear about your situation, Gin. Sounds frustrating, indeed. Can I ask what the surgeon's explanation is for the issues that apparently resulted from the pouch advancement? Curious, as my surgeon as suggested a PA due to my fistula.... I'm not a long-term low residue dieter, but perhaps have a few ideas in addition to Sharon's. Instead of oatmeal, there are other hot cereals such as cream of wheat, and malt-o-meal (even chocolate malt-o-meal!), etc. Both with honey drizzled on,... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Pudendal Neuralgia/IBD/Nerve Injections
KelseyHey2308KelseyHey2308
KDelphi anyone else been Dx now with pudendal nerve injury or entrapment? I have tried so many thing sfor it and I hear surgery is very often unsuccessful.....I am on gabapentin (HATE it) and a low dose anti depressant and they are doing nothing...oxycodone w/acet. only helps a little and, thanks to druggies, it is very hard to get a high enough dose of them to do any good in OH....any ideas anyone? empathy to all [ more ]
vanessavy It was the first time I ever hugged a doctor. I got off the table and couldn't feel any pain or anything I am on Norco now but I have been battling C.diff and an abscess so my body hurts. Find out tomorrow if I formed a clot. Never ending drama! But I have had the lidocane injections, those are nothing and don't last long, they are just in the back with small needles. Real nerve blocks are about 5 inch suckers. Doesn't hurt though and was interesting watching it being done. [ more ]
TE Marie That's really interesting Becky's mom. They told her it's hypersensitivity from the operations and dropped it. I was told it must be adhesions and am still on Norco. At least these other ladies have doctors that are trying to do something to get rid of the pain! Vanessasavy and KelseyHey please let us know when you receive help so we can seek the same. Take care everyone. [ more ]
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J-Pouch ForumsGeneral Discussion
Consistent Churning/Noises
JD Jeff D
jipalmer Hey Jeff- your symptoms sound similar to mine. Constant "flip flopping" is what I call it, when I eat, when I don't eat, all the time. And towards the end of the day, after I've eaten my multiple small meals throughout the day, I get this discomfort in the lower left part of my abdomen that is just indescribable... I feel so full and uncomfortable no matter what I eat. I was dx with abdominal adhesions which were causing bowel obstructions back in December and the surgeon said once they... [ more ]
ks1905 I went for an MRI to check for adhesions. Which they did not see but the GI said it could be just the way my body(organs) were positioned at the time of the MRI that hid the adhesions. They can also find them surgically, many times they find them during the take-down surgery and remove the adhesions. I had a scope done and they saw the stricture and they dilated it. I've been good ever since (knock on wood). I feel better and all the noises went away....guess I was getting backed up because... [ more ]
Jeff D I've had my j-pouch for just over 2 years. I haven't been on any antibiotics since I was treated for C-Diff in late January. I was just checked for pouchitis 2-3 weeks ago so I'm hoping it's not undiagnosed. I don't believe I've been checked for an abdominal adhesion. How is this done? Can it only be done by a GI doctor? How is a stricture diagnosed: through a scope, CT scan, etc? [ more ]
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J-Pouch ForumsGeneral Discussion
1st surgery tomorrow
S SwollenColon
jipalmer Good luck! Will be praying for you. I had mine done in one step ten years ago so I don't have advice specific to your surgery tomorrow. BUT- I did just have adhesion removal a few weeks ago and definitely walk around as much as you can...helps with the gas. Also, make sure they ween you off the pain pump sooner rather than later and get you on oral pain meds. This last time they kept me on the pain pump until the day before I left and I had horrible withdrawal symptoms when I got home. Just... [ more ]
mgmt10 Walk around a lot after surgery. Learn as much as you can about caring for your ostomy from the nurses while you're there in the hospital. One thing I found exremely helpful was having a home care nurse come to my house for a few visits after I got home. Check with your insurance company. I think I was covered for five visits. Take one day at a time and you'll be fine.....good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Suggestions on getting Insurance to Approve VSL3-DS
K ks1905
Mountain Baker I couldn't get my insurance to cover VSL #3 DS so I applied to NORD and have been getting it for free for 3 years. I'm on disability but my husband works. We are middle-class but still qualify for assistance. Theresa [ more ]
ks1905 But my insurance company has no problem paying for Xifaxan or Entocort, each cost $1,700 a month. I was told that if I did get VSL-3 DS approved that it would be a $50 copay which is what I pay out of pocket for VSL-3. So I'd like to try the stronger VSL3-DS version. The way I see it (which the insurance company doesn't care about) is that it is a chance to get me off the expensive antibiotics, steroids, office visits and expensive scopes. [ more ]
Scott F I wish I'd been fighting a high copay. Several insurers have stopped covering it at all. At full retail (which has fluctuated at my pharmacy), the maximum dose of 4 packets/day adds up to $7,000-$8,000 per year. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
What did labor feel like with J Pouch!!
L Ljclifford816
Somegingersomesnap Thanks Ljclifford, Sorry, I haven't meant to take over your thread . . . Yes, they are tracking her size as I make small babies (my husband is Asian and I'm pretty small boned), so baby being too big definitely isn't a concern. That being said, it took me two hours to push out my daughter 9 years ago and she was only 5 pounds (she had to be induced early). I asked the ob but of course he just said it could be the same this time with a full term baby or I could push her out in 5 seconds flat... [ more ]
Ljclifford816 I have been thinking of you and your big decision, and was curious if they are doing regular growth scans for you? While I know growth scans aren't 100% accurate, my last scan was only off by a few ounces compared to his birth weight. Maybe knowing how big baby is projected to be will help you make a decision? We have been home for a few days now and I am happy to report that my J-pouch hiccup didn't ruin breastfeeding. While he had to have formula during my NPO/NG ordeal, he has taken to... [ more ]
Somegingersomesnap Thanks Lisa! I'm still on the fence, so this is very helpful. It is nice to know others delivered vaginally and it went fine. I wish there were more long-term studies on us j-pouchers and delivery. K [ more ]
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J-Pouch ForumsGeneral Discussion
Are PSA Levels in Men with Pouches Higher than Normal?
NYC GooglerNYC Googler
NYC Googler With a PSA hovering around 2.0 I can understand why you would reject his hypothesis. Thanks, Jeff [ more ]
Bruce D My PSA value has been below 2 until recently when, after a three year interval of no tests, it was found to be 6.0. My urologist put me on a four to six week schedule with Cipro and another try at PSA returned a value of 1.9. I experienced no symptoms or concerns about any problems such as a bacterial infection or prostatitis. I have had my pouch for 15 years and my age is 81. I would dispute any claim related to pouch proximity as a cause of an elevated PSA. It doesn't make sense. [ more ]
NYC Googler Hi Jan, Good to hear from you, it's been a few years, glad to know you're still out there offering your excellent wisdom and support. I agree, any surgery that results in the prostate being regularly exposed to inflammation could result in the same elevation of PSA. Jeff [ more ]
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J-Pouch ForumsGeneral Discussion
VSL causing diarrea?
MB mary beth
mary beth Thanks Scott. I am REALLY hoping the VSL is the problem and not a coincidence. I gave her half a packet of VSL this morning before I thought of it and the diarrea continued most of the day. I started giving her Citrucil from a recommendation here and it seems to have slowed things down a bit without the bloating and gas like Metamucil. Also, her stool has started thickening this evening and has turned more brown which hopefully is a sign it was the VSL. I just hope much that´s the case as... [ more ]
Scott F It's certainly worth stopping the VSL for now to see if things get better. Not everyone tolerates it equally well, and it's not a critical part of her care. Jeffsmom, VSL #3 is a high-potentcy probiotic with six beneficial bacterial strains. It's been shown in clinical studies to help prevent pouchitis. Its single-strength form (powder or capsules) is available over-the-counter, and its double-strength (DS) form requires a prescription. It's expensive. I use it at the maximum dose - 4... [ more ]
Jeffsmom What's VSL? Sometimes in see this acronyms and have no clue what they are. [ more ]
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J-Pouch ForumsGeneral Discussion
New Connecticut GI
Grieving Old pouchGrieving Old pouch
CTBarrister Because I am a soldier on the battlefield between insurers, insureds, third party claimants and Doctors, I can say there is a lot of truth to what Scott says. There is an "us against them" mentality that often pervades on both sides, and since I am one of the few attorneys who is often on both sides, I get to see it and hear it in the flesh. Doctors are frequently spoken about in very unflattering terms based on reputations that they have developed from any of a number of criteria, including... [ more ]
Scott F The insurers' practices vary, but they often behave horrendously toward doctors, in terms of abusing their time, challenging their integrity, and undermining their professional judgement. If they actually served as a thoughtful, qualified second opinion things might be different, but the insurers' motives tend toward the corrupt, and their methods are unspeakable. I'm not at all surprised that doctors who can fill their practices without exposing themselves to such unpleasant behavior jump... [ more ]
CTBarrister I went to see Drs. Gelernt, Gorfine and Bauer (none of whom accept insurances) and endured long wait times in their office and it took months to get appointments. However, these 3 were/are among the best of the best in NYC along with Milsom who, from what I heard, also does not deal with insurance. I believe it is a combination, they don't have the time to deal with insurance and perform surgeries as there are only 24 hours in the day, AND they want to make money after they pay the... [ more ]
See all 24 replies...
J-Pouch ForumsHelp! Need advice now!
Kinck, swelling or obstruction?
L LoveLife
skn69 Lovelife, I have recently rediscovered ginger and ginger tea. They seem to help whenever I am feeling blocked and bloated. I alternate with green tea and grape juice. They are my go-to treatments. I love heating pads and hot baths too. Massages with warm oils in a circular motion on the tummy help a lot (try massaging first then putting the heating pad on your tummy or lower back). I find that for a few days to a week post obstruction I feel achy, crampy and still slightly blocked. I think... [ more ]
LoveLife Thank you again. I to love salads, but you are right, it is not worth it, not at all [ more ]
Spooky LoveLife, You can start back on solid foods - slowly - gauging by how you feel. As long as you are continuing to pass stool, you can start eating softer foods. I generally start with soup, yogurt, cottage cheese, apple sauce, scrambled eggs, etc, when I'm recovering from an obstruction. So you may be fine to go to the dinner depending on what is being served. Even pasta or lasagna might be okay, if you don't eat too much all at once. If you've been dilated before, you probably had/have a... [ more ]
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J-Pouch ForumsGeneral Discussion
Flagyl ALREADY? Advise Please!
MB mary beth
ks1905 The output of the Loop ileo doesn't give much of a clue on what to expect the output of the j-pouch to be after the take-down. I'm a good example of that, I only need to empty my pouch 3-5 times a day but when I had my loop ileo they didn't want to let me leave the hospital because my output was so high. They were even considering doing my reversal before releasing me (after only 2 weeks), they tried loperimide, lomotil, tincture of opium and Metamucil but nothing worked except for time for... [ more ]
Spooky Mary Beth, Hopefully this is a sign that things are looking up! I also had very watery output with my loop ileo no matter what I did, and I was also worried that I would have the same experience with the pouch, but it's mostly been fine. In fact, these days my stool can actually be TOO thick at times and I have to occasionally resort to prune juice to help get things moving. Just food for thought! In general, though, frequency starts to go down after 6-8 weeks post surgery, though in my own... [ more ]
mary beth Thanks all! She is already on the max Imodium, 8 per day. I didn´t feel it worked when she had her ostomy bag either, she always had very high and liquidy output but the surgeon thought it would be better after takedown. I picked up the Flagyl script but am going to hold off because I too feel it´s a last resort thing especially since the scope was negative for pouchitis and she has no other symptoms besides frequency. She is pretty much pain free most of the time and shes staying hydrated. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Car accident-- causing problems?
E EBeck82
BillV Your pouch should be OK since it is in a well-protected area. I was thrown from a horse and had a double spinal fracture, was hit by a car in a crosswalk and involved in a rear-end car collision. None of these accidents had any effect on my j-pouch. [ more ]
Scott F I agree with CT. While it may be an injury worth following up on, depending on the duration and severity, it's unlikely to have anything to do with your pouch. [ more ]
CTBarrister It's probably just seat belt injuries and soreness from that trauma, but you may want to call your primary care Doc and see if they want to do a CT scan or abdominal ultrasound, which I had done in the past for a suspected hernia in the aftermath of lifting a girlfriend and feeling pain in my abdomen and groin. Make sure you tell the radiologist you have a J Pouch. [ more ]
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J-Pouch ForumsOstomy & Skin
My pouch is getting removed Feb. 27th
Ann M.Ann M.
Lambiepie Haha, I wish one of my side effects was wanting to clean! I know about trying to find control where you can, though. I found myself getting really negative and angry over stupid things before this surgery. I'm not waiting for the other shoe to drop anymore. It is a relief and a blessing. I had some issues with leaking as the swelling in my belly went down. I met with my ostomy nurse yesterday and she saw what was causing them. I will now use a convex appliance and I think that will do the... [ more ]
Ann M. Hi Lori, What a great quote! So true, I did feel ruled by the pouch. One theme for me about having Crohns/UC, is that feeling of having no control over the illness. That lack of 'control' truly showed up in different areas of my life, such has being a neat freak with my house, because cleaning was something I could control. It's very interesting, the psychological effects that this physical illness contributes to. Just during my recovery, I find myself stressing about the clothes piling up... [ more ]
Lambiepie Ann, glad you're on the healing side of this and you will continue to feel better and stronger. I was concerned about pain, too, mostly about the butt pain, and relieved that it wasn't as bad as I expected. I read as much as I could from people who had already gone through it. The thing that stood out for me was that even those who had pretty major complications from surgery were still glad they had it. I also remember the line posted awhile ago: "the j-pouch rules you; you rule your ileo."... [ more ]
See all 5 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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