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J-Pouch ForumsGeneral Discussion
Cuffitis and possible prolapse?
L Laciep
Laciep Thanks for the input everyone. Over the weekend things got quite a bit worse when it comes to pain, trying to empty my pouch and bleeding. I usually have pain and bleeding from the cuffitis, but I'm in a lot of pain now and am bleeding quite a bit more than I normally do. Is intense anal pain and bleeding normal with a prolapse, or is it just irritating my cuffitis even more? I'm assuming I'm having more trouble emptying because the bulge is over my rectum, which I'm assuming is the pouch... [ more ]
Jan Dollar Yes, prolapse is a structural issue and no medications will suffice. You either live with it, or have surgical repair. Sometimes it is as simple as tacking the pouch on the posterior abdominal wall. Again, defography should show where the defect lies. Jan [ more ]
Scott F I'm pretty sure the only way to fix a prolapse is surgical. Possible (tarnished) silver lining: It could be worth considering treating the cuffitis and prolapse with a single surgery (pouch advancement with hand-sewn anastamosis and mucosectomy). Such a procedure is best done by a very experienced surgeon. [ more ]
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J-Pouch ForumsGeneral Discussion
VSL & Output
slightly_creativeslightly_creative
Pluot It's not unusual. Give it a few weeks and see if you go back to normal or see an improvement. Some people just don't agree with VSL and you might find that the increased output never goes away. For me it was like that -- VSL just doesn't work for me, so I take Florastor and Culturelle instead. Anyway you won't know until you give it some time and see [ more ]
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J-Pouch ForumsGeneral Discussion
How do I help my partner?
S Silvi
Lambiepie You are a wonderful partner and your boyfriend is lucky to have you. He may not act like it because of the depression, but im sure he is appreciative of everything you do for him. Being in a j-poucher's shoes can be hard but it's hard on the partner, too. Chronic illness, along with always needing to be near a bathroom, is so isolating. Please don't think that you're forcing counseling on him. That's exactly what he needs. I would not have made it without my therapist. I, too, sat in a chair... [ more ]
Scott F He does have medical options. If he's having unacceptable side effects to a medication, it's generally best to ask the doctor for an alternative treatment to try. There are a fair number of options to treat pouchitis, and and even larger number available to treat depression. They definitely don't have identical side effects, and it's usually possible to find an effective treatment that's quite tolerable. Whether you will be able to help motivate him to do his part is an open question. [ more ]
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J-Pouch ForumsGeneral Discussion
Upper GI with SBFT and Transit TIme
H HeatherPyle
rachelraven I used to be more predictable, but now I'm like Jan with my nearly 24 year old pouch... but I'd say I'm more like 6-12 hours now. [ more ]
Jan Dollar Sounds about right to me too. For me, anywhere from 2-12 hours is normal, depending on what I am eating. Jan [ more ]
CJB Heather, 4 hours seems about right to me. My breakfast comes out around lunchtime, and my lunch comes out at dinner time. My pouch is almost 19 years old and that's how its always been. C-Jay [ more ]
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J-Pouch ForumsGeneral Discussion
Hi! J-Pouch Surgeons in NYC (that are in-network)
T Teddy92
Lambiepie Teddy, my surgeon at Mt. Sinai did ALL of my procedures laparoscopically. [ more ]
Pluot I think you might be confused about what an "emergency" colectomy is. Surgery is considered emergent if you arrive in the ER and need surgery *now*, or if you are in-patient in the hospital and need surgery *now*. Any other surgery -- even if you schedule it two days in advance (which is what I did), is considered elective. If you need surgery that is truly emergent, it will almost always be performed by the surgeon on call and usually it will be open. I had one close call where they were... [ more ]
Teddy92 Thank you all for your feedback! I really appreciate it. I am unfortunately doing a little worse (Remicade does not seem to be doing its job anymore) and so I am beginning more research on this. If anyone still reads this, I was wondering if you had any experience having an emergency colectomy and/or if in such a scenario you had enough time to request a specific doctor and/or get it done laparoscopically? [ more ]
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J-Pouch ForumsGeneral Discussion
Ongoing nausea with NO pain
TE MarieTE Marie
TE Marie I sent my Internist a link to Mayo's information about Gastroparesis, like your link here. I hope her nurse passed it to her to read. Thanks for confirming my suspicion about the problem. I've gone off of my GERD medication to see if I still need it several times and I think this nausea is different, but who knows? I'm going to schedule an appointment with one of my GIs. [ more ]
Jan Dollar Seems more upper GI than pouch related to me. Since you already know you have GERD, I'd look into that first. Just because your meds have not changed, your GERD may have. Especially with it related to the size of your meal, it seems upper GI, like your stomach is not emptying properly. This is common with GERD. Diabetes too, but I know you are not diabetic. Plain abdominal films would not show it. Problem is that the meds for gastric motility (Reglan) aren't good long term because of side... [ more ]
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J-Pouch ForumsGeneral Discussion
Catheter vs. Enema
N Nomoremeds
MarkGregory I had to use a catheter almost every time for 20 plus years, just to be able to more completely empty out. Enemas did help me, but in the end, I had to use the catheter trying to get out as much as possible, and decrease the number a trips to the bathroom. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch Location
slightly_creativeslightly_creative
TE Marie My j-pouch is "large" per my imaging etc. It definitely is against my tailbone. I've seen it in my X-Ray with contrast imaging while discussing it with my GI. It affects my lower back pain along with arthritis. [ more ]
Jan Dollar It is in the back, behind your bladder and next to the posterior pelvic wall. It is low, in the pelvis, next yo the sacrum. So, yeah, if you have things going on with your pouch, you may get very low back pain, such as tailbone. But, unless you have other symptoms like fever, pouchitis symptoms, etc., it is more likely to be muscle strain. Jan [ more ]
Scott F More toward the back, though low enough that it's as much in the pelvis as abdomen. There are some pouch problems that can cause tailbone pain. Are you asking if your lifting may have caused a pouch problem? It can sure cause back problems without the pouch involved at all. [ more ]
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J-Pouch ForumsGeneral Discussion
IV Rehydration.... but not feeling energised from normal fluid intake ?
FM Former Member
Scott F It turns out that a small amount of sugar is something of a "magic ingredient" in rehydrating solutions. It dramatically increases water absorption, and saves many lives in cholera outbreaks. Cordials, not so much. Just follow the recipe. [ more ]
Jaypea It looks to me like you are consuming a lot of sugar. Cordial is basically a simple syrup with fruit flavouring. Tea is a diuretic and fizzy pop is loaded with sugar which only pulls water into the bowel contributing to dehydration. There are lots of recipes on line for oral rehydrating fluids that don't contain sugar. [ more ]
Former Member Thanks for all the positive replies. I totally understand the differences now. I wasn't aware of the effects of fruit juices and fizzy drinks, I believed as long as I was consuming fluids, it was good. I was aware that our system can be flooded by too much fluid which can cause equally severe problems. I thank everyone for taking the time to thoroughly explain their replies. [ more ]
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J-Pouch ForumsGeneral Discussion
small bowel cancer?
K KeepFighting(Manny)
Jan Dollar Yes, in a way at least. There is a normal gut reflex called the gastrocolic reflex that stimulates peristalsis when your stomach is full. This is to make room for the meal that will soon be coming along. It mostly affects the colon, but it also affects the small intestine. Some people are more sensitive to it than others. I can tell you that I nearly always feel the urge to empty my pouch within 30 minutes of a meal. But everyone is different. It all depends on your individual gut function. [ more ]
KeepFighting(Manny) Jan, Is it normal to have the feeling of needing to empty the j pouch immediately after eating (within a couple of minutes) even if there's nothing that comes out? Is that normal j pouch behavior? Or could it be my crohns? [ more ]
Jan Dollar Doctors always mention all possible causes, even if unlikely, so try not to worry too much about cancer, unless there is something specific that you find out. Inflammation markers are not a good way to determine level of disease, as it varies from person to person. You can have adhesion troubles without inflammation being the issue. If you are having a great deal of pain soon after eating, your trouble is most likely upper GI, not pouch related. As I am sure you know, Crohn's can affect any... [ more ]
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J-Pouch ForumsGeneral Discussion
C-Diff problem
TS Tommy Shoe
TE Marie I don't know how long I had c-diff before it was diagnosed. My GI took a stool sample during a pouchoscopy so it was treated before pouchitis. I was treated with flagyl and had to take it around 4 times before I was sure it was gone. I didn't retest each time as I hadn't been off of antibiotics for 2 weeks. I believe most doctors would treat j-pouchers for pouchitis before testing for c-diff. C-diff isn't very common. I had c-diff several times when I had my colon and once it was caused by... [ more ]
bostwis1 I got C diff shortly after my takedown. Like Pluot, Vanco made me feel better, but then I relapsed 2-3 weeks after being off of it. I then was prescribed Dificid and have been fine since. [ more ]
Rebe0505 yes you should see improvement within 3 days i would think..perhaps because it has been going on so long its a little more stubborn but other drug recommended good idea.. once you get c-diff under control i recommend you get some ss boulardii.this can help prevent reoccurrence however,once you have had it you are susceptible to it in future..and anytime i go bad without explanation i know i need to get tested for it..and have been advised to do it various times a year.. i have been lucky in... [ more ]
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J-Pouch ForumsGeneral Discussion
Question Re Canassa
N Nomoremeds
TE Marie jeane, I don't understand releasing it into the anal canal or before the cuff? I don't retain anything in that space and never thought about doing so. I make sure that area is clear of excrement as it contributes to my butt burn....are you saying you don't put the canasa into the bottom of the pouch? There is no way I could hold anything in that area, laying down included. I think you've had problems in that area so what you are saying makes sense, I never thought about it before. I avoided... [ more ]
jeane Here's a suggestion on how to combat this problem. When you insert the canasa, try to get it just into the anal canal and just hold it in place for a couple of minutes ( just hold the end a bit keeping the medicine in place for a couple if minutes). That often is enough time to soften up the medicine to allow it to release in the anal canal and not move up into the pouch. I happen to deal with ulceration both at the anastomoses and below so I often do want the medicine to enter the pouch as... [ more ]
TE Marie Mine goes into the j-pouch above the cuff. IMO that is where it is supposed to be. The medication will mix with excrement but there is no avoiding that. I try to insert it after I've emptied my pouch to make it most effective and lay down after insertion. During bad times of 15 BM's a day, for example, it's impossible to wait for an empty pouch. These are also the times when we need canasa the most. I insert it, lay down and hope for the best. I also use Anucort, hydrocortisone suppositories... [ more ]
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J-Pouch ForumsGeneral Discussion
Iced coffee goes directly to my bag ???
PouchomarxPouchomarx
Pluot Liquid has to be absorbed by the intestine before it's processed by the kidneys, and anything that's processed by the kidney is peed out. Seeing output in your bag just means that the iced coffee is flowing through your intestine too fast to be absorbed by the intestine (and then turned into urine). This isn't so unusual, for reasons listed above. [ more ]
slightly_creative The one thing that would flow completely through me in a matter of minutes was Ice Cappacino's when I had both an end and loop ileo. I think it maybe has something to do with the cool temperatures and caffeine maybe? I'm not sure what it is exactly but I wouldn't be alarmed. I used to grab a bagel with it and eat it with the Ice Cap to slow it down some. [ more ]
rachelraven When I had a loop ileostomy, orange pop would do that. I could literally sit on the toilet, and keep the bag open, drink the pop, and it would come right out of me! Think it depends on the fluid, and you likely are absorbing some. The small bowel is surprisingly long. [ more ]
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J-Pouch ForumsGeneral Discussion
WE NEED YOUR HELP
Bill JBill J
Bill J Thank you everyone who has donated! And thank you everyone who just comes here for help. It's been my honor to serve those who have suffered with these terrible diseases. I made this site many years ago because I didn't have anyone to turn to when I needed advise. I didn't want that to happen to anyone again. I will be retiring from my job soon and I will spend more time on the site. I'm even looking into some new features. I wish everyone the best of health. Bill [ more ]
katenet Glad to donate thank for all you do [ more ]
suebear Well said Judy and Jill. I've also been around the site for 14 years and back then we regularly hung out on Thursday nights for chat. Also due to this site a core group of us in CA started meeting for lunch every December. We still meet and that is thanks to Bill and his efforts to keep this site running. This site was different back then, there was a lot more collegiality and friendships were made. If you feel that you have benefited from this site, then think about donating. I know that... [ more ]
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J-Pouch ForumsGeneral Discussion
green stools
ccpouchoccpoucho
JeffDC Mine remind me of the green of a tennis ball. Kinda neat. It happens every three or four months. [ more ]
Spooky I would add too, that if you're having other symptoms, it could be a mild intestinal virus. We certainly aren't immune to those! If it's a transient problem and doesn't occur very often, I wouldn't worry to much about it. It's common to have loose watery stool if you have skipped meals, or if you've gone a long time between eating. But otherwise, as Scott suggests, it's a good idea to look back on what you've been eating. Blueberries, blackberries, red cabbage, black or purple licorice or... [ more ]
Scott F Sometimes it's blueberries! [ more ]
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J-Pouch ForumsGeneral Discussion
Two Weeks Post Takedown Update: Doing GREAT.
ATXGuyATXGuy
Rockwall63 ATX - I've had my pouch since '86 and literally don't remember the first months after takedown. I'll defer to others on how you are tracking and how you should progress. Sure I've had ups and downs but support my decision to remove my colon 1000%. My best practices are to try and keep a long-term view (which is very hard early on). Set realistic short-term goals but keep the bar fairly high overall. I felt that as I progressed that I needed to push my system by introducing foods... [ more ]
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J-Pouch ForumsGeneral Discussion
New Discovery
vanessavyvanessavy
Subzeromambo We switched our whole family to an adapted autoimmune Paleo diet. It took about a month to figure out how to make it affordable, time efficient and tasty. I reviewed way too many cookbooks and finally settled on UCer Danielle Walker's gut friendly cookbooks with a few recipes from Nom Nom Paleo. Are you still doing well on Paleo? Any other suggestions you might want to share? [ more ]
n/a Interesting, Vanessavy. I cut way back on gluten (but not entirely) and the arthritis in my hands has all but disappeared. I was thinking it was the turmeric I started, but guessing now it's going mostly gluten-free. Sorry to hear of the IC, but glad you are finding methods to deal with some of your other issues. [ more ]
vanessavy Oh, it is a miracle! [ more ]
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J-Pouch ForumsGeneral Discussion
Newbie Here
W Walt1
Judy1 Walt, you will do well to listen to Chuck. He is very well versed on FAP. If he doesn't know the answer to what you ask, he will find it for you. [ more ]
TE Marie I'm glad you posted twice and have seen it many times. I don't have FAP as an underlying cause for my j-pouch. I'm concerned about your mental well being too. I have depression and anxiety and have been helped by medications and therapy. I hope that you are getting help for your depression. It is not something we can "will" ourselves out of and seeking help is only going to help whatever lies ahead for you medically. Charlie is fantastic, I hope you take him up on his PM offer. If he hasn't... [ more ]
Chuckus Walt, I posted a reply in the FAP forum to your inquiry. I'll help you any way I can..........just ask. I did give a recommendation for the FAP Guru @ Mayo Clinic in Jacksonville, it'd be in your best interest to see him directly as like I say, he IS the guru and is quite versed in FAP! I'm here to help. Hang in there, chin up and there are lots of us to help. Are you on Facebook? If so, shoot me a private message here and we will hook up there and I can get you into some of the "private"... [ more ]
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J-Pouch ForumsGeneral Discussion
Constipation after Colectomy
H HeatherPyle
Jan Dollar Most of us here had colectomy for IBD or cancer, so we did not have your issue. It sounds like your entire GI tract is affected with this motility disorder. There are few drugs available for stimulating the gut, and most of them have not so great side effects when used long term. I suppose you have been seeing an expert in GI motility disorders? If not, I think that is your best bet. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
nutrient absorbtion
ksrksr
ksr Thank you everyone! I am glad I have my j-pouch but I feel it can be tempermental. Since getting my j-pouch in 2002, I feel I get sicker more often. Especially with gastroenteritis. [ more ]
GraceB I have also had vitamin deficiency before and after my surgery due to UC. It took a long time before I was vitamin deficient. I take multivitamin, VitD, magnesium, calcium, B12 shots, prolia for osteoporosis, due to UC and I am iron deficient can not take iron because of constipation. I do feel fatigued most of the time. It took awhile before my blood work started coming back normal. I was a very active before my UC. The disease took a lot out of me. I would love to be able to obtain my... [ more ]
Jan Dollar All very true, CT! But, I did want to point out that of the typical 15-20 feet of small bowel, only 6-12 inches is used for the pouch, so it really is a quite small percentage. Plus, at least in the U.S., malnutrition due to inadequate intake is rare, since most of us consume far more than is required for health. So, even if it is not as efficient, in most cases having a j-pouch does not mean inadequate nutrition absorbed. Still, it is another factor added to the pile of various risks,... [ more ]
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J-Pouch ForumsGeneral Discussion
Steroid question - epigastric pain
rachelravenrachelraven
rachelraven Thanks, Jan. I'm just watching my diet, taking the meds, and hoping that weaning off the steroid helps. I took prednisone for YEARS as a kid, never had anything upset my stomach with them, or give me this effect, but I'm older now, and guess it can happen. *sigh* Also, this darn seton just needs OUT. Why they wouldn't let me pull it is beyond me. I need a trial with it out, anyway. I think if my surgeon was available, he would have been agreeable, but since he wasn't there this week, and his... [ more ]
Jan Dollar I was on high dose prednisone for about six months before my colectomy. No epigastric pain or upper GI distress for me. But, who knows? I could have had something going on and was unaware of it. Nobody ever looked in there and I had so much other stuff going on as a distraction. Since then, I do't take more than two weeks at a time. Hope things simmer down for you soon. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
My bags are packed...
ATXGuyATXGuy
ATXGuy We'll call today the UC flashback day. Last night was fantastic. Family brought in some beautiful puréed squash soup, and it seemed to agree beautifully with my pouch. Emptied about 11 and slept until 4 when I produced prototypical j-pouch applesauce and the same again at 7. Upgraded to low residue diet, and my first non liquid foods have started the **** storm, propelled on by a not insubstantial bit of gas. Stool is more loose, and I've felt the first tingles of a burning ring of fire. All... [ more ]
Scott F It sonds like things are on the right path. The zinc oxide (or other barrier) works best to *prevent* butt burn. It doesn't do a darn thing to treat it once the skin is irritated. [ more ]
ATXGuy I figure I'll keep updating this as I move forward. Someone might find it helpful some day. I was up twice last night, but with full control and no real urgency. Was able to actually lay in bed for a while and think, "Do I need to get up? Yeah, probably should." Output is a runny gel like liquid, and the 2nd trip brought out what I've seen called on this site a "whoosh of gas" at the end. I don't think a fart has ever felt so good. Been in twice more between 7 and 11 am, with similar... [ more ]
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J-Pouch ForumsGeneral Discussion
Humira pen vs. Syringe
BebeksporBebekspor
kta Those needles are strong. Many years ago, I was injecting my horse in the rear end. She threw a tantrum when the needle was in and kept flexing the muscle, threatening to kick me. With every flex, the needle and syringe stood straight out. When her muscles relaxed, the syringe went flaccid ( for lack of a better word.) I eventually gave her the shot and am still amazed the needle never broke off. My point is, I wouldn't worry about the needle breaking. [ more ]
Jan Dollar It will be OK. Once you get past the "OMG-I'm-sticking-myself-with-a-needle" thing, you'll be fine. Just like throwing a dart. Hold it like a pencil and stick it straight in. Ice the site, and let the alcohol completely dry before injecting to help reduce the sting. And, don't let your husband watch. Jan [ more ]
Bebekspor Thank you! The pen gave me so much anxiety. I think I'll stick with the syringe. Very nervous about this Katie [ more ]
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J-Pouch ForumsGeneral Discussion
First Leak on new ostomy..what went wrong?
dgtracydgtracy
dgtracy Thanks all for the feedback. my ostomy "temp" maybe, but i had requested an end-ileo thinking i would get a spout type deal but its not that much different looking than my previous loop ileo. i do believe the problem then was pancaking. this is the first type of instance where that has happened and it does have me a bit scared to sleep tonight. i try to sleep on an incline sometimes so the output would just naturally slide down but always end up on my side. appreciate all of you come in here. [ more ]
Caty Hi, I've had my permanent ileostomy since 2007. What has happened to you (and has happened to me on rare occasions) is while sleeping your fecal material pooled around your stoma and wasn't able to move its way down. Consequently, stool sat around the stoma and then found another way out. What you need to start doing once or twice through the night is to use your finger and swab around the outside of the bag and move the stool down. It will become part of your nightly routine, and you'll get... [ more ]
Dog The adhesive shouldn't be affected by the cold. As I recall, the adhesive "activates" at body temperature. Sometimes, you just have a bad o-ring. Perhaps your skin was not completely dry or you had some stoma powder that was still lingering when you applied the wafer. Or, you might have done everything right and your loop-ileo (if you have one) is to blame. When I had my loop-ileo, I ended up having to change appliances more frequently than with an end-ileo b/c the adhesive would weaken... [ more ]
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J-Pouch ForumsGeneral Discussion
Just found this online..
T the_original
the_original Cheers for the replies guys and gals! Yeah, I was only diagnosed with UC about 25 before my colectomy, I was in bad shape, months of bleeding and weight loss, my haemoglobin was at 59 and I had to get repeated blood transfusions. They admitted me straight after my colonoscopy (or at least partial as they couldn't get past my rectum apparently) and tried treating me with everything.. I did one dose of Remicade on a Thursday and the following Thursday the gave me a double dose of Remicade. To... [ more ]
Dog I think our adventures in UC are similar. One day, I started being gassy. 10 days later, I'm in the hospital crapping myself to death. One month later, I've lost 50 lbs and had a total-colectomy. Hang in there, I've had no issues with my pouch! [ more ]
Spooky I echo what others have said. On a forum like this, you typically only hear from people who are having problems. There is a much larger portion of people who have had this surgery and have few if any issues. They are out living their lives, not bothering to post here. Thus I would not encourage you to heavily base your decision on what you read here. But, since you are here, I will throw in my two cents. I have had my pouch for over 6.5 years. I had an ileostomy for 2.5 years previous to... [ more ]
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J-Pouch ForumsGeneral Discussion
Post 3rd surgery leakage
G Goody21
Dog That sounds normal. You'll have some bowel movements that are mostly mucuos and I think those, if I recall, are yellowish. As your body adjusts, those should be less frequent and then one day should stop. [ more ]
Scott F I think you're just adjusting to your pouch, most likely. This is one of the many reasons this process is described as difficult. I got benefit early on from psyllium husk and Lomotil, but some surgeons seem to feel strongly about delaying these approaches. [ more ]
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J-Pouch ForumsGeneral Discussion
high crp levels
H Hawker
clz81 my crp levels are always high. most of the time they are taken while i have an obstruction, but when they do follow ups or annual checkups, they are still up. because it's so non-specific, it's assumed that my pouchitis keeps it elevated. [ more ]
Hawker normal crp levels are about 8 and under when I get crp levels at 200+ it notmally means my colon is very inflamed causing blockages or a infection. yes xrays is what im waiting for [ more ]
Jan Dollar What is the normal reference point for your lab? But realistically, CRP tells little other than you have inflammation. It is extremely non-specific and not diagnostic of anything. I would think that at least a simple abdominal film would be in order. Hope the get to it soon! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
What do ya think??????
M MaryMomof3
MaryMomof3 Hi Sharon No- we have been intimate before & never had this occur.....wondering if I had a pocket of infection that burst...will never know [ more ]
skn69 Could your physical relations with your husband have stimulated or shaken up your pouch a bit? Pushed it or jiggled it into a position that caused all of the leakage? I know that when I had some ovarian cysts, every single time that hubby and I made love I suffered for days. You may wish to talk to your Obsgyn about it and see what he/she thinks. You may need to change positions until you get hooked up or work on alternate pleasures until you are healed up. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Can Your Pouch Tolerate Multisymptom Liquid Cold Medications?
CTBarristerCTBarrister
CTBarrister I am happy to report that the Guaifenisen AC Cough Syrup knocked out my painful, hacking cough and loosened up the phlegm. Probably should have gone to the Doctor two days earlier and spared myself some suffering. Also, the cough syrup seems to have an imodium-like effect on my bowels, so I am actually getting 3 benefits from taking it, codeine to knock out cough and dial back the bowels, and Guaifenisen to loosen and dissipate the phlegm. It is getting the job done and fills Jan's criteria... [ more ]
rachelraven Antihistamines dry me terribly, so I avoid them if possible, or only take 4 hour vs long acting meds, so I can gauge things better. I don't need Imodium type meds, so can't chime in on that. I've always been ok with a dose of NyQuil at night, when necessary. [ more ]
Jan Dollar As a rule, I never take those multisymptom drugs. I take single ingredient drugs for my specific symptoms. This is mostly so I don't take drugs I don't need. I never have issues with those in regard to my pouch. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Self Funded Healthcare Plan
AyrishGrlAyrishGrl
AllyKat Don't even get me started on Health Insurance right now. I'm sorry your going thru this as well. [ more ]
AyrishGrl Apparently they have dropped anyone in the Ohio Health network which is a good part of the state. Ugh. [ more ]
TE Marie I'm glad you contacted her. Things are sounding better as you have a few core doctors still available too you. I would be lost with out my Internist, GP, and GI. Also good regarding your supplies. I hope you find out things will be smoother for you partner as well. Please let us know this all ends up as I'm sure there are others here that will be faced with similar problems. [ more ]
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J-Pouch ForumsGeneral Discussion
Sleep paralysis / hallucinations?
FM Former Member
Jan Dollar Disruption of REM sleep regulation can cause this. Steroids are known to be a cause of sleep disruption, and that is why you are supposed to take them in the morning. But, Entocort is not supposed to be systemically absorbed much, and what is absorbed is supposed to be metabolized in the first pass through the liver. But, maybe you are just extra sensitive to small amounts. Levaquin, and all fluoroquinolones, can cause insomnia and anxiety, so a more likely culprit. If you are not going to... [ more ]
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J-Pouch ForumsGeneral Discussion
stress
F F-TOY-120
Mema 1 Stress does the same thing to me to. When I get stressed my stomach starts to growl and I get major shooting gas pains. TE Marie, you're absolutely right about taking a deep breath, but it's so hard to remember when you're doubled over in pain. When you take the breath it releases some of the stress for sure. I'm going to start to meditate and see if I can't get rid of some of my stress. Actually, when you start to meditate that's what you're supposed to do, take deep breaths in the... [ more ]
TE Marie I know it is hard to reduce stress as we run in to it at every turn. I have been taking deep breaths, where your stomach moves as you are filling up your lungs up completely, and it's helping. I can only speak for myself but it releases my body from a tensed up feeling to a calmer one. Practicing deep breathing during the day's helped me relax but also realize just how tightly wound I am. That's what helps me - but I'm one tensed up stress ball of nerves [ more ]
F-TOY-120 Thanks for the feedback, i believe stress is on of my issue with my pouch, stress is can make people very sick [ more ]
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J-Pouch ForumsGeneral Discussion
leakage, nothing but liquid
F F-TOY-120
Scott F Most people with pouchitis can clear it up with 10-14 days of Cipro or Flagyl. Symptoms tend to improve within a day or two for many. There are more difficult cases of pouchitis that need longer or continuous treatment. Those folks are the exception, but we're often found here, for reasons you might expect. [ more ]
F-TOY-120 If it is pouchits how long does it last [ more ]
F-TOY-120 Thank you [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Continue lomotil or not?
slightly_creativeslightly_creative
Lesandiego When I was about 6 months post takedown, and after two bouts of pouchitis, one hernia operation I started taking only 1 probiotic a day. My surgeon wants his patients as drug free as possible and so do I. Bentyl and lomotil did nothing for me anyway, since my problems were pouchitis related. I also take 900 mg of neurotin a day (for non j-pouch related reasons) and Unisom to sleep. I sure miss my Advil, but it caused me to bleed. I have been doing 98% great since January. My two bouts of... [ more ]
Jan Dollar It is fine to continue lomotil or Imodium as long as you need it. They do not harm your body. You probably don't need much bowel slowing (if any) while on antibiotics, so taper off as needed. Many of us wound up getting sort of constipated this way. I always stop my Imodium while on antibiotics as the stool becomes more thick. I have beepn on Imodium for 19 years without issue. But, I take far less now. I don't judge my pouch success on how many pills I take, but on how I feel. Jan [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
J pouch Surgery- one step but Unique- two crazy questions.
C Crazy1
dawn58 Because of a surgeons mistake, I had an ileostomy for 7 and 1/2 years instead of 7 months. I had takedown a little over 2 months ago and have to say I am doing great. I have control and go about 4-6 times a day. As for changing the diagnosis to Crohns, a quote from a few doctors I know, "nothing like bringing on a Crohns diagnosis like a working jpouch." The reason for this is because stool now just sits in your pouch, unlike before when it would all come out. That being said, I would still... [ more ]
Scott F That's a tough road, Crazy1. You've bundled up a bunch of questions here. 1) J-pouch option? 2) One-step? 3) Crohn's risk? 4) Depression. You might be a fine candidate for a J-pouch. A consultation with a skilled surgeon would be the next step. As Pluot wrote, attention to your sphincter strength would be part of a good assessment. I don't know how close to Cleveland you are, but the Cleveland Clinic would be a brilliant choice if you can swing it. It wouldn't hurt to start doing kegel... [ more ]
Pluot The big concern after having an ostomy for 10 years is that your sphincters may have lost too much strength to have a good outcome with a reconnection. No one can tell you over the internet if that has happened -- you'll need to visit a surgeon and have an anal manometry test done. As far as a one step, it's a risk that you and your surgeon have to be comfortable with. People with UC tend to have slower healing and therefore an increased risk of anastomotic leak. I would be very, very wary... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
IPS?
Mema 1Mema 1
Mema 1 Thanks everyone for being so helpful with your advice. So much appreciated!! Now I just have to figure out what to do about the narrowing and the cramps that I'm getting from it. [ more ]
CTBarrister Donnatal is milder than Bentyl and Levsin but it's designed to treat the exact symptoms you are complaining of. I used it to treat spasmodic bowel/pouch and found it to be effective. My issues were triggered by eating, the act of which would trigger excessive peristalsis. Your issues seem more related to anxiety and stress and therefore an anti-depressant might work better, but Donnatal is worth a shot. Good luck. [ more ]
Mema 1 I've tried the Bentyl and the Lesin, Scott, and they didn't do a thing for me. Haven't tried the Donnatol, but would think that since it's the weakest of the drugs, doubt if it would do anything for me. As I said before, I'm not even sure that it's IPS that I'm treating. I just know that whenever I have any kind of stress whether it be good or bad stress my stomach starts to groan and growl so everyone in the room can hear and the gas pains start...if that's IPS, then that's what I've got. [ more ]
See all 24 replies...
J-Pouch ForumsGeneral Discussion
help jpouch surgery post 2 days
H Hawker
KOB Hawker, I cannot tell you if what you are experiencing is normal, but according to my surgeon and the associated interns etc it isn't. I had my reversal on 15/10 and went home 17/10. Some pain for a few days around where the stoma incision was sewn up, but apart from that relatively pain free. Now 2 weeks and two days after the surgery there is no pain at all and hasn't been for the last 10-12 days or so. I use metamucil 3 times a day and the stools are relatively formed. Metamucil is your... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
A massive dilemma
ManchesterManchester
Manchester Please don't get me wrong. My wife to be is extremely supportive of me having the surgery and postponing the wedding. It is me that is unsure as I know it would devastate her but she would rather me get better than have a party. Also, the NHS really is that bad. I emailed my gastro to explain that I was in a bad way and I needed surgery and I insist I speak with my surgeon ASAP. That was 1 month ago and last week I received a letter to say an urgent appointment has been made to see my... [ more ]
skn69 Why do you think that you will not be in good condition for the wedding??? Or are you more worried about the wedding night? If I were you (and I have been there or pretty close to it) I would see when the next possible surgery date is, when was the soonest that I could take my poor pouch out and start packing my bags...did you mention cancer? Did you mention the dangers of cancer to her? Why in the world would you wait and live with the horrors of the unknown, the pain and discomfort when... [ more ]
ATXGuy I can't answer anything else on this, but I will say that any potential spouse/partner who would be more upset over a cancelled party than the possibility that you would suffer is maybe a poor choice. The ceremony & reception are nice, but marriage is about the promises made--and hopefully kept--between partners. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
sugar free vs. with sugar metamucil
D dawn58
CeeeeCeeee I love Metamucil and use the sugarless variety when needed. Typically, I no longer use it regularly. I am over 10 years post takedown. However, when I feel I need more comfortable b.m.s, I either use Metamucil or eat oatmeal. They both seem to have the same effect on me. How easy is that treatment!!!!! [ more ]
dawn58 So far I have only tried the orange smooth metamucil. I take a tablespoon diluted in a few ounces of water before or during each meal. I will let you know after I try the Kirkland brand. I think the result may be different after takedown than it is with the loop. [ more ]
KeepMovinOn Thanks for the tip on the sale at Costco! I use the same kind you do and have not tried the others yet, except for the smooth vs. the original coarse. I did not do as well with the smooth. Can I ask how you take the Metamucil? Do you take some before every meal and how much? I still have my loop ileo and have been trying to experiment before takedown, but have not had a lot of advice from the doctors in this area. I will be interested to hear if the non-brand name works as well for you! May... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
CT scan showing soft-tissue nodules
B blufnger03
CeeeeCeeee Your physician sounds like my dermatologist. Everytime I see him to have something checked he tells me what it could be and ALWAYS says, "It could be cancer." At first I panicked. Then, I realized he had to cover his you know what! Of course "it could be" just about anything. I no longer let his statements regarding cancer bother me. You have done all the right things and the odds are probably on your side....it probably isn't cancer. But......even if it is......it sounds as though you have... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
What to do?
MysticobraMysticobra
Lambiepie I agree. I just started the fiber two days ago. I think I was just so surprised when I saw what came out of me - it's been a long time since I saw it look like that! Having said that, I'm used to loose. It's not any harder for me to hold in and more formed usually means more gas and more straining. I'm just experimenting. [ more ]
Mysticobra Thing is I don't mind loose stool. I know everyone tries to find a middle ground on it but why? I would rather have it loose cause anything thicker seems to be difficult for me. I have trouble passing it. I think I have some of the cookies here. Just for the heck of it I may try one. Thanks. Richard. [ more ]
Lambiepie Metamucil wafers give me fully formed bms. You just have to be careful to find the right balance between too formed and too loose. The plus is that they are delicious. [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
Any Nurses - Blood Test Result Questions
J JessGoguen
Jan Dollar Gallstones can be a cause of pancreatitis, as stones can block the common duct. But if you had a stone in a duct, you'd be way sicker than you are, and your labs would be much higher. More likely inflamed ducts from chronic gallbladder "sludge." The MRI should sort this out. Glad you are finally on the right path to finding the source of your problems. Chronic pancreatitis is more insidious, so more tricky to nail down. Jan [ more ]
JessGoguen Thanks Jan, Confirmed by doc that it's definetly some inflammation in the pancreas. GI is scheduling an MRI. I have been having upper abdominal issued for the last 10 months. Everything point to gallbladder and my upper abdo pain has always been deemed gastritis. Hopefully we figure it out because eating sucks and sleeping isn't any better. [ more ]
Jan Dollar Could be a mild case of pancreatitis. That would explain why Prilosec did nothing for you. These numbers are not that elevated, and that may be why your doctor did not have pancreatitis on his mind at first. However, the fact that he did test for pancreatic enzymes means he had an inkling... Jan [ 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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