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J-Pouch ForumsGeneral Discussion
Humira
B BlmBlp
BlmBlp OK. Thank you. I'll give it two more months and keep my fingers crossed. [ more ]
Jan Dollar It can take up to 3 months to see the full effect, if it is going to be effective. After that, if there is no mprovement, you can assume it is a no go. Myself, I saw results within a month. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Confused? Not sure what to think?
M mom2panda
Jan Dollar Hmmm...that doesn't sound good. Might be time to have your gallbladder checked. Antibiotics could have calmed down a touchy gallbladder. Your symptoms (other than that leaking) sound more upper GI. The leaking is another story. Could be the stricture returning? One thing for sure, this doesn't seem right. Jan [ more ]
mom2panda Thanks, Jan. I should have mentioned that I am also on Lomotil - 2 tabs 4x per day and Metamucil 2x per day. That leaves me with 11-15 BM's a day. The leaking was somewhat sudden as it only started happening in a 3 week period and got progressively worse. I never had had any leaking - especially at night - prior to all of this. I got major constipation from the antibiotics as well as wicked fatigue. In addition to the symptoms returning, I also have stomach cramps after eating now. I am lost. [ more ]
Jan Dollar Could just be some bacterial overgrowth, but could also be pouchitis. Way too soon to be worried this is something chronic. Sometimes it just takes longer for these things to get worked out. It is easy to think that you need the antibiotics, since they seem to solve all your problems. But, it could also just be part of the adaptation that we all have to endure. Antibiotics help because they reduce the amount of stool by wiping out the bacteria. Good in the sense of reducing your output. Not... [ more ]
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J-Pouch ForumsGeneral Discussion
how to ease pain in using suppositories?
BM boy's mom
jeffp One thing I didn't think of earlier is a nice, hot bath. That might help soothe the pain. [ more ]
dgtracy I'm saying i wouldnt do it myself, i was prescribed proctofoam which is hydrocortisone, didnt do much for me, easy to retain much easier than canasa, preparation H, and that little Nozzle it had irritated things, never tried their supps [ more ]
boy's mom he is already prescribed a month of annucort - which is hydrocortisone. It seems like a lot of people use that or hyrdrocortisone foam? [ more ]
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J-Pouch ForumsGeneral Discussion
Hydrocortisone Warning
P PDXDavid
dgtracy They gave me that conversation about heparin and how i needed to take it while in the hospital etc...i said "lady...have you seen me walking? i past by you...you said hello good job, keep it up..." i felt like the first time i got that heparin shot she basically attacked me...i was mid conversation with her about being gentle and she essentially stabbed me in the stomach with it...it worked but after that NOPE [ more ]
Spooky I was using cortifoam or entocort on and off pretty much the entire time I had my rectum. I was prescribed it because I needed it. In this case, I think the doctor was probably cautioning against using it when it wasn't absolutely warranted -- but the same would go for any drug. I mean, for a while post-op I was taking heparin. Nasty drug and caused me to bruise like you wouldn't believe, but at the time I was at risk for clots, so I had to deal with it. As usual, always follow your doctor's... [ more ]
rachelraven Agreed. I work in critical care, and I'm used to seeing medicines used in massive doses, even steroids. Must weigh the benefit vs risk in all situations, including with meds. [ more ]
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J-Pouch ForumsGeneral Discussion
FODMAP Diet
S Subzeromambo
Subzeromambo I found it. Thank you! [ more ]
Anushka Just search for "fodmap" in you App Store if you have an iPhone. It should be the first result, the one published by Monash University, blue icon. [ more ]
Subzeromambo Beckysmom: I hope your daughter has a speedy and successful recovery! Anushka: I wish I had known about the diet before I lost my colon. I suspect my quality of life would have been much better. What is the app called? I do feel much better after a week on the diet. I find my fear of food causing pain is slowly disappearing. I am glad it is working for you too. [ more ]
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J-Pouch ForumsGeneral Discussion
PLEASE HELP
kronikDiarrheakronikDiarrhea
MarkGregory Do you feel lots of pressure in the pouch, but cant force anything out? Or does it seem further up? If you are feeling fullness in the pouch, and are unable to force anything out, then you should try using a medina catheter to expel things, and get some relief, at least until you can be checked out by your doctor. This catheter has been a lifesaver for me, as i have had elimination problems practically since day one. They come about 12" long, but cut them to about 6". Makes them easier to... [ more ]
rachelraven That's ridiculous advice. Tell them to seek other care. [ more ]
Anushka Oh dear! One person I know who has a stricture was told by a GI to take Malox. [ more ]
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J-Pouch ForumsGeneral Discussion
3 years later and still feeling great!
L Lyns
NancyJo Lyns, I enjoyed reading your post. Your story gives me some validation for my decisions. It was 41 years ago that I was diagnosed with UC, I could not have gone on that long with out being blessed with long remissions. The last 4 years though was very difficult with flare ups that were grueling and then "teaser" remissions. I decided to go in for surgery in a fairly healthy state, rather than waiting for some kind of emergency to force my hand. I struggled with this decision for a long time... [ more ]
Scott F I haven't seen Dr. Mowschenson's name in years. I had a consultation with him in 2000 or so, but he believed I had Crohn's and wouldn't agree to or recommend a J-pouch for me. I was impressed by his honesty and thoughtful manner. I ended up chasing down a less conservative surgeon on the West Coast, and fortunately haven't been punished for my aggressive approach. [ more ]
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J-Pouch ForumsGeneral Discussion
Air travel
U UCWarrior2010
NancyJo Hello everyone, I am new to this forum. I found you all by searching for J-Pouch forums. I am 2 days away from having my take-down surgery and I am anticipating this with trepidation. I travel a lot for business and this business of travel with the j-pouch was a deep concern for me. Your comments have given me a great sense of relief. All my questions and concerns have been addressed. So thank you. I realize it will not be a cake-walk at first, but at least I can look forward to someday... [ more ]
Spike Hi there. I travel extensively by air. Up to 40 flights or even more most years. generally these are only an hour or so but in the last 4 years I have done 4 trips to Europe return from my home in New Zealand. Guess what - no problems at all. I had a J Pouch in 2004 and the first few months maybe even a year were a bit strange. Now it is not an issue. Having said that I don't gorge myself on food anytime but especially flying long haul. I limit myself to one beer because beer in quantity is... [ more ]
AllyKat I try not to eat or eat very little before a flight because my pouch seems to build up with a lot of gas with the change of air pressure. [ more ]
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J-Pouch ForumsGeneral Discussion
Cleveland Clinic and bad news - now what?
P Pkitty
Pluot Cleveland Clinic still performs j-pouches on confirmed Crohn's patients depending on other risk factors. You can read more about their "j-pouch risk score" in this paper: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1360119/ My understanding is that one of the main requirements is that the patient have Crohn's colitis without small bowel involvement. I don't know much about microscopic inflammation and whether that would be considered a level of inflammation that would rule out a j-pouch. If... [ more ]
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J-Pouch ForumsGeneral Discussion
9 days post step 1- too nauseous to eat/drink :(
A Anthonyv
Pluot I'll strongly second that. I was switched from opiates to oral Tylenol (paracetamol) four days post op. As long as you can keep it down it should be tolerable. Have they tried any anti nausea meds? [ more ]
Scott F Strong (opiate) pain meds commonly cause nausea. If that's the cause, the best way to get rid of the nausea is to reduce or eliminate the opiates. Perhaps you can try putting up with more discomfort? [ more ]
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J-Pouch ForumsGeneral Discussion
Probiotics
F FrustratedButFighting
Scott F Sharon's suggestion will often work, but if you're stuck on the tarmac in hot weather the baggage compartment can get quite warm. I take the opposite gamble and always carry it on. [ more ]
skn69 Most baggage holds in the plan are not temperature controlled and thus very, very cold ( the contents of your luggage is usually freezing cold if you open it just after you take it off of the belt)...so I put any delicate foodstuff or meds in my suitcase..I used to bring cheese in from France in the good old days when it wasn't ilegal. It arrived nearly frozen...so if you need to, keep it cold, take it strait out of the fridge and put it strait into ziploc and then into a thermal bag (to... [ more ]
Scott F I travel with VSL #3 all the time. It's okay if it comes to room temperature for up to a week, but it's hard to know how carefully it was handled before you ever got it. Depending on the length of a trip (and my level of obsessiveness) I have used all of the following techniques at least once: 1) Carry it in doubled paper bags so it's less likely to warm up in transit. 2) Put it in Ziplock bags and pack those in a big, wide-mouth ice-filled thermos. Sometimes this method leaks, depending on... [ more ]
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J-Pouch ForumsGeneral Discussion
dehydrated??
Akk3769Akk3769
Scott F While controlling the diarrhea is critical, you really only have two options with hydration: get enough fluid (however much that is) orally, or get it intravenously. I hope you are able to drink (and absorb) enough water to stay out of trouble. If you are truly dehydrated, vigorous exercise may turn out to be extremely risky. Exercise is generally good for you, but not if it requires IV hydration. [ more ]
Akk3769 Unfortunately the doctors where I live do not know anything about J Pouches. They didn't do urine analysis, didn't test my potassium, and just put a straight Saline IV in which helped for about an hour. I explained to them they I didn't have a colon and they looked at my like I had 2 heads because I also didn't have an ostomy. They gave me one bag of Saline and then sent me home and told me I needed to drink more water! I think it's pouchitis again because I have been having complete water... [ more ]
Spooky When I had fast heart rate and exhaustion, I was severely hypokalemic (low potassium). I needed an IV. You should NOT ignore this; you need to have a full blood work-up to determine if you have an electrolyte imbalance. Water alone is not going to fix the problem, and if potassium is the issue then no amount of salt or sugar will rectify it. At the very least, you should probably go to an urgent care or walk-in clinic. [ more ]
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J-Pouch ForumsGeneral Discussion
Adhesions and strictures
L LisaT
LisaT Thanks for the feedback. [ more ]
Jilly It was covered by insurance for a while. Then some idiot decided it was palliative care and wouldn't pay. Of course that was AFTER I'd received the treatment! That was back in the 2002-2005 time frame. After insurance quit paying, I paid the PT under the table to treat me. Eventually, she said that,as we'd become friends, she couldn't "hurt" me anymore. Remember I said that breaking up the scar tissue is paaaaaaaaaainful. I got treatment again after my second obstruction in 2011. It takes a... [ more ]
LisaT Why did you stop the treatments? [ more ]
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J-Pouch ForumsGeneral Discussion
Anastomotic leak..
J j_stone
Jan Dollar What a tough break! I am sure you are feeling like kicking yourself, but the leak likely would have occurred regardless. Sounds like your surgeon was on top of it and dealt with it quickly. To answer your question, I think it just all depends. Depends on how big the leak is, whether there is tension on the anastomosis, and how good the blood supply is in that area. I had a leak. It sealed off by itself, even without the ileostomy, and I even had a large presacral abscess. I guess I had a... [ more ]
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J-Pouch ForumsGeneral Discussion
What do you eat for breakfast??
dgtracydgtracy
Anushka Ive' been eating rice porridge with coconut milk, almond milk and lactaid. I sprinkle salt and cinnamon and dice up 1/2 banana. I've been pouring juiced strawberries or blueberries over the top also. For the porridge, I've mixed cream of rice with quick oats and left-over coconut sushi rice. I follow the bowl of porridge with an egg for protein. Seems to be working for me. I'm on the FODMAP diet, so am using lactose-free milk. [ more ]
Lesandiego I do not eat breakfast as digesting food causes me to have spasms. So, since I work 7am - 12pm, I can wait to eat lunch and dinner only. Never was much of a breakfast eater. If I feel hungry, I will eat a mini donut and/or toast with coffee. [ more ]
Scott F I start out with a *large* glass of water. I presume I'm dry after a night without drinking water. I then have Greek yogurt with a couple of VSL #3 DS packets mixed in, as well as blueberries, banana, and sometimes strawberries. I keep the portions modest (e.g. 1-2 strawberries, 12-15 blueberries). I chase that with some Metamucil powder in water, and then a couple of mugs of coffee with soy milk and some sugar. My mornings are usually fine. I wonder about the gastro-colic reflex Jan... [ more ]
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J-Pouch ForumsGeneral Discussion
how do you sleep? what seems most comfortable?
dgtracydgtracy
skn69 It looks like a failed construction zone in my bed...small, medium and large pillows + a body pillow all over the place...I have 3 piled under my legs and thighs if I want to lay on my back but if I am on my right side (left is impossible because it makes my un-anchored k pouch flop over)I need the body pillow so I can throw my whole left side half way over it (fetal position with arm and leg flung over the top of it)...sleep feel like work nowadays instead of rest...every time a pillow... [ more ]
kta Interesting post. I could sleep on any side or my back for about five years post takedown. Then I had a horrible case of cuffitis along with something my doc had never seen before. He called it a fizzure for lack of a name for it. I was in a lot of pain and suddenly had to go every time I slept on my right side. This has slowly, as in over four years, gotten better, but to this day, I can only sleep on my right side if I have just emptied my pouch. I never thought this was a pouch thing. Now... [ more ]
PDXDavid When I'm having issues - which is most of the time - I start out on my back, in a slight inclined position. This seems to let me force myself to relax during spasms and cramps, without the feeling that I am about to lose control. It seems that changing positions is more likely to produce an urge to go, no matter which side it is, so I try to get comfortable and stay put as much as I can. [ more ]
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J-Pouch ForumsGeneral Discussion
Some news better than none I guess
SpookySpooky
Spooky killcolitis, Maybe it's covered for inpatients? Or, perhaps it's covered as a pediatric procedure. My GI discussed this at length with me in March and he even called to try to get me approved. That's something I can definitely ask about, though. As much as I hate the hospital, at this point, if I had to go in for a day or two knowing we could finally sort this out, I would do it. [ more ]
killcolitis I hope flagyl does the trick but otherwise just wanted to let you know that my daughter had the pill cam at the children's hospital last summer and it was completely covered. The issue of coverage/funding was not even raised? Odd. [ more ]
Spooky Considering we can get funding for this, I'd definitely request the test pill first. That's a very good idea. I'm not at all keen on the possibility having this thing hung up somewhere in my digestive tract. [ more ]
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J-Pouch ForumsGeneral Discussion
Biofeedback to control urges and spasms
P PDXDavid
beckysmom Hi. My daughter went to biofeedback for about 6 visits prior to coming home from college and finding out she did need surgery. The biofeedback did help somewhat with the pain she was having, but her's was a surgical issue that needed to be resolved. She brought the meditation from the biofeedback on her phone to the hospital and used it a few times while she was there. Her biofeedback wasn't just directed at her pouch, it was for the pain she had been having for months. Hope it helps you. [ more ]
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J-Pouch ForumsGeneral Discussion
pouch re created
S Sandyj
Jan Dollar Pouch reconstruction is a rare procedure. Very few surgeons are experienced with it, so it is smart of your surgeon to refer you to the experts. Jan [ more ]
dgtracy I Echo Mike on this one..word for word. [ more ]
Mike H This is a life choice only you can answer. If a surgeon has to refer you somewhere else to fix his J pouch maybe he should not be doing them in the first place. [ more ]
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J-Pouch ForumsGeneral Discussion
can anyone help with food ideas?
J jgering
PDXDavid There are only a few foods that I know with 100% certainty will give me problems. Eggs are one. Chili peppers are another. But some of the foods that we are "warned" about - like broccoli, bell peppers, onions, etc., I find are OK in moderation IF..... IF.... IF... there is also some bulk of "neutral" food in the meal, like mashed potatoes or pasta. The key for me is to dilute the desired offensive food as much as possible with bland food. That - for me anyway - seems to lessen the negative ... [ more ]
CeeeeCeeee Guess I'm lucky. I can eat/drink anything without repercussions. Have you tried introducing just one of the culprit foods in small amounts and trying it over a week? If no problems, add another culprit food. If a problem, hold off on the particular food giving you a problem. Try it again in a few months. I found that foods which didn't work for me early on became okay later. I know this sounds like work but it can yield very positive results. Best wishes! [ more ]
Minn Mark I appreciate your struggles. You need to be patient. My surgeries were in 2006-7 and there are some foods I have been able to slowly work back into my diet, while others are still no-no's. I agree: everyone's system seems to be different, so when a poster poses an issue like yours there will likely be lots of different answers. For me, it seems I do better and more consistently to always use Bean-o for gas, to eat lots of Activia yogurt, and for fibrous foods I tend toward always cooked... [ more ]
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J-Pouch ForumsGeneral Discussion
Stop Borrowing Trouble
MH Mike H
Spooky I don't think anyone here at all has ever pretended that this site is a substitute for actual medical advice. It's a support group. I come here to vent or bounce ideas off. There have been long stretches where I've been well and haven't been here basically at all, but I do like coming here because sometimes it's hard for people in our everyday lives to relate to what we're going through. At least people here sort of get it. That being said, you offer some very good advice in the sense that... [ more ]
dgtracy Trust But verify - Russian proverb I'm guilty of this as well. Though if i had not joined this site i would not have met some of these people that give you the motivation to get through some of these things. I know exactly how you feel and mean OP. [ more ]
Lesandiego This site has helped validate my concerns that what I might be experiencing is/is not normal. IMO it is always nice to be "validated". [ more ]
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J-Pouch ForumsGeneral Discussion
Straining
A Allison
dgtracy Same thing happens to me, Right when i sit down i end up straining a bit, once things start moving its like it found the door and the rest follows, after that once the "door" closes i have to strain a bit again to get the rest out, gas and all though thats usually harder to do. alot of times leaning to my left or your right i find helps as well, almost always to the point where one of the two cheeks is off the cushion. [ more ]
lovedby2 I had my takedown since October of 2012 and I too have to strain... Although I hear it is not good on the pouch to strain... But it seems to just happen, like my body wants to bare down. I strain but try to limit the pushing, if that makes sense... I know when to back off. [ more ]
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J-Pouch ForumsGeneral Discussion
Constipation vs Diarrhea.....how to find the balance? Help please
XenophonXenophon
Jan Dollar Unfortunately, these early months are very trying on your patience (and your butt!). Things are in flux and as soon as you think you've got it figured out, things change. So, you have to be willing to change with your adapting body. For me, I would rather have loose, easy to empty stools. I don't have trouble with urgency or continence, so it works for me. I take Imodium to slow things down, but no added fiber to thicken things up. Over time, I've gradually reduced my Imodium need. At first... [ more ]
dgtracy is the bleeding from wiping so much and it becoming raw? if your bleeding internally and D maybe pouchitis? [ more ]
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J-Pouch ForumsGeneral Discussion
Which side is your fistula on?
P PDXDavid
n/a Right side, "pouch-vaginal-fistula" (really, "pouch-perineal"); 1 seton. [ more ]
rachelraven Mine is on the right, an "intrasphincteric fistula at 7:00." I only have one seton/fistula. It does not involve my pouch. Was *possibly* due to pouchitis, narrowing of my outlet, an irritation, and straining that I got my abscess then fistula, but that's theoretical. No signs of Crohn's in any other way, so surgeon is reluctant to go there (because you CAN get a fistula without Crohn's... Apparently my paternal grandfather had one, but never had IBD). I keep the Crohn's thing in the back of... [ more ]
Uc-Danielle Left side and mushroom drain and 2 setons. Still having issues today pain and such [ more ]
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J-Pouch ForumsGeneral Discussion
Pelvic Floor Dysfunction
L LisaT
boy's mom Ms.M: Have you started bio feedback? Is it working? It may be advised for my son. Thanks [ more ]
Ms.M Cc Rocks! So glad to hear of your success. I have been having problems since m first surgery. Ive had my last 2 out of 6 up at CC and am under the care of the great and wonderful Shen, who has been amazing. They just figured out that I have pelvic floor dysfunction. How did your biofeedback therapy go? I have a prolapse that they won't attempt to fix until I do 10 sessions of biofeedback. The only thing is I live in Nashville. Not quite sure if they can do the sessions back to back or if it... [ more ]
kk I was told I had pelvic dysfunction and cuffitis. Given Canasa. Said he thought both would help. I was having problems emptying. Two ulcers in the anal canal. Therapst had me do exercises. At the end he evaluated my progress and pelvic was back to normal but didn't help problem emptying. Told doctor therapst thinks it had to do with dysfunction of pouch but doctor said I didn't need to be revaluated. I am not positive but I think my problem is a hemroid. I have problems when stool is certain... [ more ]
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J-Pouch ForumsGeneral Discussion
Ulcer in my cuff
CristolCristol
jeane I have had similar biopsy results as you even when on the rectal meds. After almost 2 years on meds, I still showed active inflammation in my cuff and a small ulcer on the anastomsis. My GI says I will most likely always show some level of inflammation in the cuff even if asymptomatic. I found using all those rectal meds more troublesome and often they irritated things worse and canasa burns. Somehow, I can manage to stay off all rectal meds when using cipro. I guess we have to pick our... [ more ]
TE Marie Just wondering as my last cuff biopsies came back saying moderate active chronic colitis. This was even with me using Canasa daily before the pouch scope and biopsies. That's why he added Anucort into the treatment plan. (Other times they are worse and talked about ulcers and friability.) Now I understand why the Canasa wasn't helping I talked about my unhappiness with how things are after 2.5 yrs since take down and Dr. Loftus said he could set up a surgical consult. I'd like to know about... [ more ]
jeane Good question TE MARIE. I think CC checked for infection and found none. My cuff biopsies always show active inflammation. I have no rhyme or reason why cipro helps. Never used it one day of my 25 years with UC and never had anal issues like I do now since having the jpouch surgery. I will never figure it out. [ more ]
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J-Pouch ForumsGeneral Discussion
How common: UC after j-pouch becomes crohns
M mickn
Dot2 19 years ago daughter was diagnosed with Crohns by a local Doctor - she went to well known hospital and she was diagnosed with UC - 2nd worse case they had seen - she ended up getting a ileostomy and then J-pouch - I have never heard Chrones mentioned again - they recently found cancer in a j-pouch fistula [ more ]
Nroley I got sick when I was 18, I kept being tested and my results always came back inconclusive, I was told b/c of the severity of my disease they suspected crohns. After a couple years a new test came out (I have no idea what it was other then it was blood work) and much to the surprise it came back ulcerative colitis. I had my jpouch surgery 9.5 years ago. In April I had a cat scan showing inflammation in my small intestine, I'm on a 2week course of flagyl and iron (i'm severely anemic ) and... [ more ]
Pluot The number that I've usually seen thrown around is that 10% of UC cases end up re-diagnosed as Crohn's at some point after surgery. freedom75, have you had the j-pouch construction already, or just a colectomy? [ more ]
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J-Pouch ForumsGeneral Discussion
Urgency/cramps/spasms
B BarryY
BarryY Thank you Jan. I am seeing my gastroenterologist soon and will discuss those possibilities with him. [ more ]
kronikDiarrhea If you eat too much fiber it can cause a partial obstruction which leads to trapped gas and stool in the pouch. This trapped gas causes very painful spasms in the rectum and causes urgency yet the inability to go to pass stool/gas. It takes a few days to clear up. Take gas x and keep walking. You also need to lay down somewhere with your legs up ( knees close to your chest) because that is the only way to pass gas when you have partial obstruction. [ more ]
Jan Dollar Sounds like a pelvic floor dysfunction (levatator ani), but that is usually associated with the early post op phase. I wonder if you have a fissure starting and you are getting early sphincter spasms from it. Another possibility is maybe a prostate problem, like prostatitis? Just a thought and a long shot at that... Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Choosing a toilet
Scott FScott F
Jan Dollar According to Consumer Reports, the double-flush models are not recommended, because they don't really save water. I was going to go with the Toto, but it seemed that the local hardware stores did not stock them and I did not want to special order one. Plus, the top rated American Standard was only $209 at Lowes. It seems that the technology has improved a lot since we last remodeled in the early 1990s. Jan [ more ]
nocolon-2000 I wish I could remember where I recently used a toilet that had two buttons in the lid: Left button for # 1; right button for # 2. I of course, pushed both separately....had to see what it was, ya know. [ more ]
Scott F I'm starting to think about the Toto "double cyclone" system, and the Washlet model that mists the bowl in advance. OTOH I could enjoy a nice vacation for the cost of that pair... I'm imagining the late "Movie Trailer Voice Guy" intoning "in a world where you don't have to manually wipe the toilet every day..." [ more ]
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J-Pouch ForumsGeneral Discussion
Best J-Pouch Surgeons in Los Angeles?
D DanielRivera
Scott F My surgery was done by Robert Beart, now at Glendale. He also did my nephew's J-pouch. I'd recommend him in a heartbeat, but I'm told he no longer operates. I'm pretty sure he wouldn't tolerate a mediocre associate, so on that basis alone I'd consider Dr. Garza. [ more ]
suebear Other good LA surgeons are Dr. Sak at UCLA and Dr. Ana Garza at Glendale Memorial. I believe that both of them take insurance. Sue [ more ]
DanielRivera I need a surgeon who actually takes insurance. No way I can pay this all out of pocket. Thanks! [ more ]
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J-Pouch ForumsGeneral Discussion
Still here w/fistula and worried about this cc and Remzi talk
Uc-DanielleUc-Danielle
Uc-Danielle Your being referred to a pain dr? I like dr leisman bc he was very nice and personable and understood what was happening. I have to go back each month though to get my scripts filled. And Friday I will see his nurse practitioner for the first time and not him. But that's bc we are 4 months in. [ more ]
liz11 ladies.. please tell me who to see. Dr. Shen is referring me.. so I can avoid another surgery. Do you each like who you both saw. And if so why? [ more ]
Uc-Danielle No it's dr. Leisman [ more ]
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J-Pouch ForumsGeneral Discussion
Difficulty fully voiding pouch & pouch prolapse
smstarcrystalsmstarcrystal
boy's mom Did anyone have success with bio feedback to help pouch prolapse? [ more ]
Kelsie My daughter has also been dx with pouch prolapse. Have you been tested for pelvic floor dysfunction? Apparently she has that too. Not sure which came first... She is going to try biofeedback to see if that helps hers before doing the surgery. The gi only gave it 15% chance of helping but we figure it is worth a shot. Good luck! [ more ]
LionsPride Have you tried a squat toilet or position? I find this helps when I'm having issues with emptying. This is an actual product designed for this, but I actually just use the bottom step of a little household 2-step stepladder and it works fine. Just something to bring your knees up. http://www.squattypotty.com/ [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch surgery in 10 days, advice please
A Anthonyv
TE Marie It's good you are doing so well! If your tummy's gurgling and stoma's flowing you are good to go I'd say. Just go easy and don't go overboard on any one thing. When you say jelly is that like jello in the U.S.? That is pretty good to eat at this stage. The more you walk the quicker you get out of the hospital and are able to sleep with out them waking you up to take your vitals! Make sure you know how to change your bag and hopefully you will have visiting nurses to help you for a week or... [ more ]
Angeltears Hi anthony its sharleen how you doing mate? If you have output from your stoma then it is awake i wouls slowly start With water etc I gave the apple juice a miss due to the acid burn on the stoma Take it easy and dont try to rush things Message me on facebook if you need to talk x [ more ]
Anthonyv Thanks for the replies Guys. I had the surgery on Friday at about lunch time and it is 7pm Tuesday now Overall I'm going okay. On the second day they tried getting me out of bed which was just excruciating. But I managed it today and walked for about 30m which I am pretty happy about. I havnt been drinking much but have been chewing on some crushed up ice. My stoma has been emptied twice and the contents was really watery browny red with a pretty strong smell. I've felt my tummy grumble a... [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Dropping in to say hello :)
DM Dave M
dgtracy Great motivation for sure!! [ more ]
DON alias (Butt Blaster) Dave I have had a J Pouch for 8 years and I to have had success. I also has a ruff 2 years but now at 59 I joined a baseball team and still run 3 miles a week. I have always said to newbees wait till about 2 years and ask yourself would you do it again and most will say yes. Hang in there it gets better we all have gone thogh ruff times but it wil get better! [ more ]
runner4449 So great to read! I'm a distance runner, and recently completed a half marathon just 7.5 months post take down, and am training for a full month that I'll run just shy of my one year anniversary of the take down surgery. You are correct...your life can and will go back to "normal" (relatively) in time. Mine seems to have gotten there a little earlier than the average, and I am quite grateful for this each and every day. Congratulations to you and hope you have continued success. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
To ELH and Elmerfud
L LisaT
ELH It was "bad", meaning surgery under full anesthesia and being opened up 6". Dr. told me that he spent 1 1/2 hours just cleaning up the adhesions only. I also had other issues. He told me that you cant have it done lapro because the adhesions are on top of each other and he needs to see them all simultaneously. Then of course there is the painful healing time like after your first surgery. But, like I said, to me it was worth it. I had my last surgery 2007 and haven't had a need for more... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Sinus Question
JF Joe Fav
Joe Fav Thanks for the feedback. I'd like to think it will pass. But it's been worsening for 8 years. I have been out of the J-pouch community and haven't researched much in the way of IBD since my surgery. I was mentally trying to put it past me. But IBD is like a pad penny that won't go away. It seems to pop up in one way or another. I just pray my kids never inherit my genetics. I am almost hoping its thyroid related and curable. But I am sure it isn't. Which means nasal polyp surgery every three... [ more ]
Jan Dollar Connie's son, Thomas, has been plagued with sinus problems pretty much since his surgery. It is definitely IBD related, but not specifically j-pouch related. There is not a whole lot of literature on this, but it is out there. There is more about other IBD related respiratory problems, like bronchiectasis. http://www.ncbi.nlm.nih.gov/pubmed/12751702 If Flonase works, stick with it. It is a local/topical treatment, so the risk is extremely tiny. My husband has been on it for years and it is... [ more ]
Scott F Flonase (or Rhinocort) are nothing like oral steroids, in my experience. The systemic dose is much, much lower, and I believe insufficient to cause adrenal suppression. The side effect profile is nothing like oral steroids in terms of frequency or severity. If nasal steroids control your significant problem, you'd be much better off using them, IMO. I find it hard to make a direct connection between this condition and the J-pouch. [ more ]
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J-Pouch ForumsGeneral Discussion
Tired after eating
W winnie
Lesandiego No, I am hardly ever tired. Since I started my part time job, I go to bed around 10:30pm and I am up anytime between 4:30-5:00am. I have never been a person that could start to waken and then go back to sleep. [ more ]
CeeeeCeeee Yes! I have to watch how much I eat at a meal if I have work to do after. Otherwise, I do take a nap! I don't have a choice.....I feel almost drunk! [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
2-pound J-Pouch Reservoir
LesandiegoLesandiego
Lesandiego Yes, I pee, but you know what is strange....90% of the time, I cannot pee until I empty my pouch first. I have always had an excellent bladder. Used to be able to "hold it" for 12 hours a day. I hardly ever have to pee. Now, the only urgency I have is to empty my pouch. I do drink about 4-6 8oz glasses of water a day, plus 3 cups of coffee and 2 glasses of wine. I used to never sweat either (from forehead or underarms). Now, good Lordy..... I rain buckets of sweat from my head if I am out in... [ more ]
Pluot I don't understand how this follows that you can't absorb anything? You're clearly absorbing nutrients and liquids because a) you weigh 122.4 lb, which is low but not clinically underweight, and b) you're peeing (I assume). [ more ]
PDXDavid Hmmmmm.... my weight difference should be 1/4 of an ounce. I'd give my right arm to be able to hold 2 pounds of fecal matter in my pouch. The instant any amount - even a drop - hits my pouch, I have level 10 pain, spasms, and cramps that literally drop me to the floor. Quite embarrassing when you are walking through a grocery store and people come rushing up in a panic because you collapsed and are writhing and screaming like someone is cutting your guts out with a dull knife. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Software to track food & symptoms
M mickn
Jilly There are two that I easily found on the App Store: GI Monitor and MyGiTrack. One of my Team Challenge buddies is really active on GI Monitor. Check them out!!! Jilly [ more ]
PDXDavid I tried one such app for the ipad, and it was not useful. I think the designer wrote it based on HIS particular issues. Don't remember the name of it. I deleted it after a few days. My suggestion would be to add a graphing element so you can see the results in pain of eating a certain food or taking a certain med. If every time you eat broccoli, it is followed by painful gas 3 hours later, you might not detect the connection but with a graph that combines pain, frequency, food, meds,... [ more ]
dgtracy Idk how tech savy you are but maybe u could create a way for the app to be able to recognize and red flag when u have the same symptoms that also had the same food logged. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Can`t quit going to the bathroom
J Jojoe
PDXDavid I will try pain management. Realistically, it seems the last effort before euthanasia becomes the only remaining option. Hopefully it works as well as some of you say it does. Crossing my fingers. [ more ]
rachelraven Pain management can (and should) be more than handing you a script for an opioid. There are many adjunctive therapies that work or help chronic pain. Hubby truly had psoriatic arthritis, managed poorly because of *course* he couldn't have pain, as he was "too young, too healthy, didn't have all the markers," etc., so the nonsurgical pain clinic treated him with lumbar injections when the medical world was failing him... So they at least helped him until he found an autoimmune specialist who... [ more ]
Jojoe I am going to one today...I will tell you first hand when I get back [ more ]
See all 29 replies...
J-Pouch ForumsGeneral Discussion
Question for Jan Dollar
Kline84Kline84
Jan Dollar Frances, Hopefully you are discussing the weight thing in your therapy sessions. Since I know nothing about you personally, I may be all wet in my thinking. But, for me, I needed to be OK with an imperfect outcome (I am not going to be a fashion model or wear a bikini). I do not hang my happiness on my weight, and I know I will always be a little chubby (more to love?). Perhaps if you joined something like Weight Watchers you could get the motivation you need. Once you lose 10 pounds, you'll... [ more ]
Frances I cant thank you enough for just saying you know how difficult this must be. It has been the hardest year of my life. I am not looking for a magic pill just want to be healthy and loose the weight. I am thankful that i have a medicine that keeps everything under 90% under control. I have a wonderful family that has been great. I thank god for them. I just feel like a salmon swimming up stream with every step foward i go two back. I will not give up i cant but i just want my hard work to pay... [ more ]
Jan Dollar Sure, sometimes unintended weight gain is a side effect of some medications, but it is too easy to try to pin it on that. So, I think you are smart to look at others factors. Depression alone can lead to weight gain and there are multiple factors. It leads to emotional eating, which often is empty, snack food calories. Plus, not working drastically reduces your activity levels. And pile onto that, the fact that the stress and anxiety associated with finances, employment, your health, your... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
1 year after surgery
O Onwisconsin
runner4449 Fantastic! I remember you being helpful and supportive when I first found this forum right before my take-down surgery (and I was an anxious mess), so it's great to hear a good update from you. Take care! [ more ]
kta What a wonderful post. Congrats on your one year anniversary and your good health. I think everyone needs to read these types of stories to know just how life changing this surgery can be. I am 9 years out and, except for moments during that challenging first year, have never regretted the surgery. Like you, it gave me my life back. I had gone downhill slowly so did not realize just how much my UC was controlling what I did or just how generally yucky I felt. Toward the end, all hell broke... [ more ]
ljk What a relief to read that this is all worth it.I am waiting for my takedown surgery in about 1 month. I sometimes fear of the unknown so again, I enjoy hearing your story! I pray like you that I do not have any accidents and and dont have to take immodium anymore. [ more ]
See all 6 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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