J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
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No, because it is not about your incision, but about the internal forces/pressure on the pouch structure itself. The pouch is constructed the same whether it is open or laparoscopic. The Pouchitis Clinic at Cleveland Clinic is the only place I've heard of issuing this restriction outside of the normal surgical recovery period. I believe it is because there have been a few rare cases of pouch rupture or prolapse that was related to what seemed to be minor lifting. However, I would suspect... [ more ]
Is there a difference between laparascopic surgery vs. open surgery as far as lifting weights? [ more ]
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J-Pouch ForumsGeneral Discussion
I take 4 packets per day of the DS (double strength). Two before breakfast and two before dinner. [ more ]
Ok, thanks for the info! Have you taken it? If so, how many packets a day did you do? The regular strength says anywhere from 2-8 packs a day. [ more ]
I only know of two ways to get the price down significantly. One is if your insurance company covers the DS (prescription only) strength - this varies from one insurance to the other. The other way is to go through through an assistance program (essentially financial aid) that requires income documentation. Lots of folks here use VSL #3. It seems to work best at preventing pouchitis, which can make it tricky to judge if it's working. [ more ]
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J-Pouch ForumsGeneral Discussion
I hate the thick messy ointments. I usually use A&D or aquaphor for my fissures and butt burn, but sometimes it just doesn't cut it! Thanks! I will have to try this ointment because I do love all of burts bees products that I have tried [ more ]
Good tip; they've just started carrying Burt's Bees products over here, so I will keep my eyes out for it for sure. Love their lip balms and foot moisturiser! (LOL, note to self: do NOT mix up application of lip balms or cough lozenges with ointment! Oh, man. I am way too easily amused.) Can't get it over here, but I have always sworn by Bag Balm for a variety of uses, inlcuding as a preventative moisture barrier. Good stuff. Gin [ more ]
When my daughter was little, we loved the Burt's Bees zinc oxide ointment. It smells so much better than Desitin! I hate Desitin. Also, once she had a bad diaper rash, and Lansinoh lanolin cream for nursing (ie. breast protection) REALLY cleared her up. You can't use it if you're sensitive to lanolin, obviously, but it was amazing. I'd also recommend giving that a shot, if nothing else is working. [ more ]
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J-Pouch ForumsGeneral Discussion
hi jan have given much thought to your advice and although I believe you are correct in that I should do the ileo first and wait on the rest I intend to go ahead with the surgery as discussed with the surgeon I see my family Dr soon and will ask about seeing a endocrinologist in regards to a plan for the surgery and to deal with the taper. I just do not want to have two surgery,s and I am afraid of the unknown if I still have the inflammation in the pouch after the surgery I have only... [ more ]
Yes, you can still have problems by having a diverting ostomy and leaving the pouch in place, but you may be able to taper off the prednisone and deal with that without having to deal with your chronic pouch issues as much. Basically, it can buy you time. http://www.nadf.us/adrenal-dis...renal-insufficiency/ You will need to get your prednisone below 5 mg before you know if your adrenals will be stimulated to produce cortisol, or if they are permanently suppressed. You cannot just taper off... [ more ]
thanks Jan I have thought about that but have read some postings from those who have left their pouches in and have had problems with discharge or inflammation and needed to go back and have them removed . My thought is to wait until I have surgery date and wean down on the pred until I am off a couple weeks before that date I am now at 12.5 started at 25 as I lived on ensure for 6 months before I started on the pred feel I can do it again. do you know at what dosage do your adrenals star to... [ more ]
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J-Pouch ForumsGeneral Discussion
Actually, a catheter will not do the job of a NG suction tube. For one, it is too short, and it is designed for gravity drain, not suction. A nasogastric suction tube has a second line for air to come in. This prevents the tube from sucking up against the the stomach wall and causing an ulcer. There are also feeding tubes that are smaller diameter, and as long as the suction tubes, but do not need a second line for the air to come in. I actually had both in place after my surgery, with the... [ more ]
Originally Posted by Gumnut: IF there is a next operation, we will insist that the nasogastric be put in whilst the operation is being done and that will hopefully save the upset and discomfort ( pain really ) that comes from the build up - to having to have it finally done a few days after surgery . . . That is not going to happen. There is no need for a NG tube unless a postoperative ileus develops and in most cases they don't. If it develops, they will put one in. It is not a pleasant... [ more ]
Originally Posted by Michael: But a vomiting j-pouch patient isn't exactly in their wheelhouse. But if you were at a J Pouch facility they would have gotten it right. Back in the day (early 1990s) there used to be a "one size fits all" NG tube that looked too big to be thrust down my tiny nostrils. I resisted while vomiting and it was forced down by a doctor that physically overpowered me. I must say that it went down much more smoothly than I would have expected (which is not to say the... [ more ]
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J-Pouch ForumsGeneral Discussion
Hi UpjohnjC...I'm so sorry you are in so much pain. I know what you are going through. I have tried so many oinments and remedies for butt problems too. I found out that most of my pain is coming from a fissure also. Anyway, I use a sitz bath as much as possible (warm water and epsom salts), coconut oil, lidocaine gel at 5% (prescription only) and also the dr. has me using b&o suppositories (belladonna & opium) I don't use t.p. I use warm moist papertowels, the really soft kind. I've... [ more ]
also when i hold it bin it burns so i have to go [ more ]
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J-Pouch ForumsGeneral Discussion
Hi Pouchomarx...I was also told to try this hyperbaric oxygen therapy by Dr. Shen...but in the long run he is also certain adhesion surgery too. I still am waiting for some kind of approval from insurance co. yet. It appears that cleveland clinic has a chamber in southpointe hospital, but there is no way I can go every day, for at least 2 months, to 2.5 hour drive from home on top of that. So I found a hospital closer to me, but they have never had a patient with j pouch to get proper... [ more ]
Takes about two hours per treatment. That does not include your travel time of course. http://www.mayoclinic.org/test...-expect/prc-20019167 Jan [ more ]
So basically, is that what consists of this chamber as far as time goes? I would need to do it for like 2 hours a day once a week for however long? I have heard at least 20-30 treatments? I cant take half day off of work every week, for one I dont have that much vacation time and two, the vacation time I do have I want to spend with my children. I am emailing him back and telling him this is not an option for me. [ more ]
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J-Pouch ForumsGeneral Discussion
Megan, have you tried a convex waffer? They helped my son when his stoma was under his skin. Also make sure you are getting that inner seal really well. Also there is something to help make the wafer stick better, the name escapes me at the moment. Thats all all I can think of for now. dianne [ more ]
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J-Pouch ForumsGeneral Discussion
Yeah that makes sense, I'm functioning fairly well taking two of each, twice daily, maybe I'll play around with dosages by dropping one of flagyl daily & see how my body reacts! [ more ]
Insurance coverage in the US is spotty for VSL #3 DS. My insurance covered it for years, but began refusing to about 16 months ago. I fought with them for a year and finally got them to agree to cover it (including retroactive coverage). I take two DS packets twice a day, and I don't let myself forget. The key to tinkering with meds is finding something that really works first. Once that's stable you can make a single change and pay attention to the results. [ more ]
Thanks Scott & CT I apologize I meant Flagyl and alcohol, got mixed up with the two. I might try to take a dose of both once daily as; like you I find it sometimes inconvenient trying to avoid consuming something else that shouldn't be taken close to the meds. I take VSL whenever I actually remember to mix it in with my yogurt; if of course it isn't near the time of taking my anti-biotics. I will ask my surgeon about VSL DS, however I'm not sure I've seen it before, I'm in Canada and... [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks for all the replies! As of right now my GI doc has put me back on xifaxan for a month. Fingers crossed (and I hope I'm not jinxing myself) but I'm already starting to feel a little better! He also wants me to try VSL#3. I'm going to post a new topic regarding that but have any of you tried this?? [ more ]
Hi Shainy Have you tried ' Soluble fiber ' and 'probiotics yogurts' together?, you should see an improvement after a couple of weeks. Originally Posted by Shainy: would drinking a coffee a day help flush out the pouch/bowel? I've heard people say on here it helped with pouchitis etc. so I drink one or two skinny lattes a day. [ more ]
would drinking a coffee a day help flush out the pouch/bowel? I've heard people say on here it helped with pouchitis etc. so I drink one or two skinny lattes a day. [ more ]
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J-Pouch ForumsGeneral Discussion
I get an IV push of Feraheme when my ferritin levels get low. Usually every 4 or 5 months. I see a hematologist regularly for this. (I recommend seeing one if you cannot get a handle on this) I've been dealing with iron deficiency anemia for a while now. Oral iron and iron from foods do not help me. I am learning that this is quite common with j pouchers. [ more ]
Yt, I just read aboutt he Chia seed but beware...if you are bleeding somewhere or taking anti-inflamatories then you should becareful...they have an anticoagulant side effect. Sharon [ more ]
I am also iron & D deficient, I could not take iron pills, so I did research online to find out what else had iron that I would be able to tolerate. I found out the hard way that doctors only know about pills and not about food or nutrition. I take chia seeds for the iron, calcium and it also helps to absorb water. I also take vitamin Calcium + D supplements that are gluten free and black strap molasses which has iron in it. I hope you find what works for you. [ more ]
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J-Pouch ForumsGeneral Discussion
I've been using Miles Greshan in Trussville for the past 8 or so years. I also saw Dr. Brasco in Huntsville a few times back in '06, but when we had our initial discussion about the possibility of surgery, he ruled out the j-pouch completely and said a permanent ileo is what he'd recommend. I didn't go back to him after that. Dr. Gresham is as good as any other GI I suppose.......I think they're all somewhat hamstrung when it comes to treating UC since they can really only go down the list... [ more ]
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J-Pouch ForumsGeneral Discussion
Just stick with the soft mushy stuff, they're gentler on your system than leafy vegetables or hard skinned fruit such as apples, pears, grapes, etc. [ more ]
Thanks for all the replies. I am 12 days post j-pouch and doing much better. Had my follow-up with the Dr. and wound looks good. I was told to take Gass-X for the cramping and gas; this has worked good for me. Bm's are down to about 10 and controllable now. Going to sleep now seems to be the issue with getting up several times before i can fall asleep. [ more ]
I'll echo what CT wrote. A J-pouch doesn't rule out any foods, and intolerances or sensitivities will generally be individual. Beyond that, there are certainly classes of foods that tend to be thickening, thinning, or gas-producing, but J-pouchers don't uniformly need the same things in these areas. [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks Jan, For some strange reason the rhumy doesn't consider it at all in my treatment...he is all about pain control but was willing to sign off on a 'Thermal Treatment' specialized in D'Ehler's-Danlos...it is a hot water/sea water/thermal spa treatment. They last 2-4 weeks (obligatory to get results and for it to be reimbursed by healthcare)...I just missed this year's session (mid April...But I just found out about it tonight)...there may be some sort of other site that has one for... [ more ]
Sharon, this sounds like the most positive news to date for you! You really need one practitioner to coordinate all your treatment, and this new referral sounds like the one. I really do think that most of your symptoms have this common thread of Ehler's-Danlos. I would have thought the rheumatologist would have been the one, but I guess you needed someone with a special interest. Fingers crossed for you! Jan [ more ]
Almost done workwise...a couple classes left, tons of finals to correct and then free! I am back to working out (a wimp workout but still...) most days for 2hrs, sort of walking, climbing a bit, a touch of pilates and a bit of stretch...the core muscles are happy, the abs strong and my lower back and legs are feeling better...but nothing is going to ever get this pain to go away. My x-rays look like a bonsai tree. My spine is twisted, rotated and curved. 1 leg is over 1.5inches shorter due... [ more ]
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J-Pouch ForumsGeneral Discussion
Thank you, I will keep the board posted. Every situation appears to be different. I have no symptoms of anything and yet the detection of HGD sent the GIs to immediate surgery because if you have HGD and UC the standard of practice is colon removal. I took two blood tests called Promethious and both were negative for UC or Chron's but still the fact that I had some sort of bowel disorder briefly fifteen years ago has convinced them that removal is the only option. Also they describe the... [ more ]
DMM, Please keep us posted on what happens to you. Your case has some significance for people on this board, including myself, who may be in the same situation down the road. As I'm sure you know, with J pouch surgery, the rectal cuff is left in, and that is the area where dysplasia or cancerous cells can appear in persons with J pouches. I have a 43 year history of inflammatory bowel disease, 20 years with ulcerative colitis, and 23 years with a J pouch that has annually shown inflammation... [ more ]
I agree, I learned more today about after effects than in 10 months of hospital visits. I have the best colon surgeon at Johns Hopkins waiting with his scalple at the ready. As soon as something definitive appears I will give up the fight. [ more ]
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J-Pouch ForumsGeneral Discussion
Just scoped in February, both ends and aside from mild pouchitis I am good. thanks for responses! �� [ more ]
Gee, after the number of years post op you are, it probably is as healed and toughened as it gets. If it is very minor and resolves quickly, I would not worry too much about it. But, if it has been a while since you've been scoped, it would not hurt to get things checked out. Jan [ more ]
It was mild bleeding. Will the zone toughen up if I keep riding? [ more ]
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J-Pouch ForumsGeneral Discussion
Hopeful11, thank you! I mentioned to him that they may question him, but not to get upset. See, he also has Aspergers, so I have to warn him of every possible situation. And as luck would have it, the kid gets to fly first class! I'm so pissed, I've never flown first class. This is his second time! I used points for the flights and he and my husband were upgraded to first class. Why can't I have that kind of luck! [ more ]
It really depends on the airport. I recently flew to Tampa and they were using a canine and everyone waiting in line was sniffed by that dog, I presume for drugs and explosives. Fortunately I did not see the canine (looked like a German Sheperd) alert to anything. He sort of did a quick sniff of me and moved on. I don't know how a dog like that would react to an ostomy but I would certainly tell the TSA agent before he gets to you. [ more ]
Hi Diane, I've flown frequently since getting my ostomy. I find that with the body scanners my ostomy always shows up, so I've developed a very easy method that has worked countless times. I just verbally (quietly) let the TSA agent who is immediately next to the scanner know I have an ostomy and where I have my medical supplies ("Hi sir, I have an ostomy that's going to show up on your scanner. Also, my medical supplies are located in that blue bag over there."). Experienced agents just... [ more ]
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J-Pouch ForumsGeneral Discussion
Thank you both. : ) I love that I can still come here looking for answers on something that may or may not be related to j pouch. [ more ]
The link I posted earlier said bike riding jostles the testicles and is a frequent cause of this brownish semen phenomenon. Ironically the group leader of my CCFA support group is a very fit guy with J Pouch who bikes avidly (does 50/100 mile bike rides) and I will ask him if he has gone through this. [ more ]
With the combination of salicylates AND bike riding, I'd bet my money on that, rather than something ominous. But, yes, even a dilation would be enough trauma. It can take time for the blood to work itself out. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Never been on an African safari but I have been on all day fishing trips in very rural areas of the USA where there were no bathrooms or facilities of any kind. I packed toilet paper and did as the bears do- crapped in the woods. My only reservation in doing same in Africa is that there are carnivores like lions and crocodiles that might bite you in the ass as you squat down.....or worse. [ more ]
When I travel on a tour I find I am very careful what I eat during the day in order to control the urges and frequency to use the "bathroom".....whatever it might be! I make up for things once we are settled for the evening and I know a western style toilet will be easily accessible. I just am not too great at squatting and so I avoid that kind of "toilet". I work on keeping well hydrated. [ more ]
I think it depends on why you're going 8-10 times per day. If this frequency is a matter of comfort/convenience, and you could readily hold it another hour or two at any given time then you should be fine. If you must urgently use the toilet every 90-120 minutes during the day you could find yourself between bathrooms instead of at the bathroom. Why not try this at home, where it's safer, and see how often you *really* must go? You might find the answer extremely liberating. You also may... [ more ]
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J-Pouch ForumsGeneral Discussion
Thank you, I have the powder (different brand) and will give it try! Yes shes only 6 weeks out but it seems like forever. Im thankful I have this site for info, advice and support but I have to admit, it can be discouraging because most people who post are having problems. The surgeons and GI made it sound like no big deal having your colon out, its only to absorb water. Fact is it´s a major deal and I wonder if my baby will have a normal life. I know I need to have patience but it is so... [ more ]
I just re-read your first post and see your daughter is only 6 weeks post take down. There is a huge adjustment period - I think for some people a year...But I wanted to clarify acacia comes in powder form. It can be mixed with water to drink it. My son won't. That is why I put it in (size 00) capsules. [ more ]
Hi (boys mom). Thank you I will give that a try! I had bought acacia fiber in powder form but someone told me it was a lot harsher than phyillum so I was scared to try it. I´ll go get the liquid form and give it a shot! Yes its very difficult keeping them on a restricted diet. She is out with friends quite a bit so who knows what she eats and doesnt tell me. But I think she is finallly realizing the importance. I cant expect she wont cheat here and there, not realistic for anyone! But... [ more ]
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J-Pouch ForumsGeneral Discussion
My doctor said it's something to do with the stricture blocking it up and eventually it builds up and liquid just gets through and it just comes out while I sleep. Sorry I can't remember exactly what he said [ more ]
My son also has issues with nighttime leakage. But he has plenty of good nights too. It seemed to me the leakage is tied with what food he has eaten late in the day ( fruit, chocolate) though I cannot 100% tie it to that. I was thinking it is the food tied in with the fact that he is a deep sleeper because he can have a week of good sleeps than a night or two of leaks etc....Why would a stricture cause night time leakage? Thanks. [ more ]
Sorry I worded that wrong. They know I have a stricture and they think this is causing the leaking. I've had it dilated under anaesthetic a lot of times and it doesn't do anything? Is there any other options such as surgery? Thanks [ more ]
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J-Pouch ForumsGeneral Discussion
I used to juice tons of fruits & veggies then when my budget was tight I tried buying green powder (it is actually cheaper than buying bushells of veggies but less 'fresh')..also.didn't take to it. No pouch problems (except for the colour of the output...a little scary the first time)... I didn't notice a sudden energy burst but then again, I never usually do (except with skinny girl)... I also bought green goodness...a green juice full of green goodness (or so it says)...I like it, its... [ more ]
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J-Pouch ForumsGeneral Discussion
I look forward to that blast of gas in order to clean me out efficiently. Without it I never feel really empty. [ more ]
I find that the only way I can "safely" pass gas is to lay on my back with my knees drawn up to my chest. For whatever reason, this usually allows me to pass small amounts of gas without passing stool. Obviously though, this is really only something I can attempt in the comfort and security of my own home. After 7 years with the pouch, I've long since resolved that it's just easier to find the nearest bathroom. [ more ]
I dunno. I've never had an accident passing gas. Just, like I said, can't do it standing up. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
They do all that as standard just wondered if there's anything else, my veins are v poor & the artery is the only way to extract so I want to make sure its only done once a year. [ more ]
I'd go for the whole panel, sugar, CBC, liver function, thyroid, white blood cells. And that's about all I can think of. [ more ]
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J-Pouch ForumsGeneral Discussion
Scott, don't wait too long! I almost died, from other than this stuff, twice! I learned in my case, when you can't breath, co to the doctor. dianne [ more ]
Lab lover, I'm a lab lover too! They are truly the best! Do you show yours, or better yet, are they family? We showed ours for a number of years. Hard work. But first and foremost they were family! Miss them so much. if you show them, where are you from? dianne [ more ]
My husband now sees a gastro doctor now for checkups. [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks Richard. It's a bit disappointing when I have my bad days, but I try always to remember how much improved I am from the days of ulcerative colitis, steroids and other powerful drugs! [ more ]
I know exactly what you mean. I work on a freight dock and the effort when you have diarrhea just wears you out fast. I am having a couple days like that now. Then all of a sudden I will have two... Three days where I am just fine and then back to diarrhea. Not my diet. I have tried everything. Even eating almost the same thing all week. No difference what I eat. It goes back and forth. I have gotten better over time and hope as more time goes by it will get even better. Think the worst and... [ more ]
Mysticobra, it's good that you don't miss work. I don't usually have any problems with emptying. I seem to be an all or nothing type of case. Either very well, or crampy, loose and not very well. The nature of my job doesn't help, pushing, pulling, lifting etc all day long. I think a kind of tiredness just sets in, when diarrhoea and cramps start and my body says No. [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks TE Marie! Maybe tomorrow I will try getting 'extra' Canasa doses in between my Cortifoam doses. My doctor is hesitant on that cause he feels inserting anything can cause damage, and that since I've been on prednisone my tissue/skin has thinned. But, last few days I've skipped most doses of both since I'm suffering from multiple hemmeroids, and without those meds I'm doing worse than usual. So, tomorrow, I'll try different plan. Thanks! Laurie [ more ]
FYI - Cipro was the antibiotic that "caused" my first bout with c.diff when I still had my colon. I've had a nasty time with c.diff in my j-pouch too. It took multiple rounds of flagyl to get rid of it. If it ever comes back they will have to give me something else as flagyl makes my neuropathy worse. Liz you might want to try using your foam and canasa. When I'm having some of my worst days I use it and anucort - at different times of the day. Now I just throw everything at it to get my... [ more ]
The antibiotics used to treat SIBO are typically different than those for pouchitis. I used doxycycline for a couple of months, and that did the trick in my case. If you do end up looking at surgery for cuffitis that just won't quit, pouch advancement with mucosectomy usually works well if performed by a very skilled and experienced surgeon. The hand-sewn anastamosis is a very delicate technique. This would be most likely to succeed if cuffitis is the *only* problem. [ more ]
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J-Pouch ForumsGeneral Discussion
I think you are describing allergies and sinus stuff. I have extremely bad allergies and even worse sinus disease. A frontal lobe headache is classic sinus disease. Top teeth may hurt. Or could be TMJ. That also causes headaches and jaw pain. Check your eyes. I bet you have dark circles in the corners or even red lines on your lower lids. Go see an ENT. Forget the primary! Dianne [ more ]
No ED drugs. Allergies are a possibility, but I've been lucky this year generally. [ more ]
I don't know where you live but could it be seasonal allergies? Every Spring I deal with headaches and it's usually from my sinuses. Also, I get dull headaches too when my iron is low. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Thank you for your reply and welcome to the site. The people here have been very helpful and supportive. I don't know for sure that Bile Salts Diarrhea is what my problem is but the symptoms fit (and make sense) and I can say for sure that the problem is not specifically related to what I ate. I have been taking Olestyr (same thing as Questran) since I already had some that had been previously prescribed before my takedown. I am very glad to hear that it [hopefully] is a temporary and... [ more ]
I do, about three times a year I will have spells that are quite bad, in terms of the burning discomfort. I find the bile acid sequestrants (Questran Lite) to be very good. Basically you take a sachet in a glass of water before eating. Generally works well for me in a few days. [ more ]
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J-Pouch ForumsGeneral Discussion
Hello Jeane...yes thank you for the input. I do use the calmospetine too and was just off of 90 days cipro. It just seems I can't get it to heal. I just know that it really puts a stop to daily activity because of the level of pain. Strange thing is I've never experienced this until 6 years ago when I had my 1st bout with pouchitis. I was blessed with a great j pouch for almost 20 years then kaboom! One thing after another. Hope you can find relief too. Thank you again. Patti [ more ]
So sorry about this. I struggle with exact same issues. Sitz baths do help and calmoseptine. As much as I hate cipro. I tend to reach for it when the rectal/ anal pain gets severe. Lidocaine helps too. I know how consuming the pain is. It never subsides esp when the fissure is active and bleeding. I hope this helps. I have also resorted to a heating pad that I actually place over my clothes on the back end when pain is unbearable. [ more ]
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J-Pouch ForumsGeneral Discussion
Hi BarbieG, I totally agree with everything you say. I always have diarrhea, worse in the last 2 years. Nothing works good, OTC barley works, narcotics work best but cant function. I had to stop working because of it. I found following a gluten free diet works best for me. I have always told my doctor and nutritionist, I feel much better when I dont eat. 34years and counting with this disease, I've had it the majority of my life. My diagnosis and J-pouch was all done in the same week when I... [ more ]
I mostly have loose stools, but it's kinda by choice. If I use Imodium or other things like that, it makes me feel like I'm constipated, even though I'm not. My trips to the bathroom per day are pretty much normal. I don't let it worry me as long as I feel good. [ more ]
Ah, sorry, medical marijuana. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
I can eat it, but I do pay a price for. It's not too bad so I eat it about once a week. Not my favorite anyway. [ more ]
I pretty much quit eating red meat, all I remember is the more I eat, the more trouble I can expect with my pouch. But compared to foods such as your harder fruit and veggies it was tolerable. [ more ]
Spencer, I avoid bananas, too. They make things too thick... They also give me raging heartburn. [ more ]
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J-Pouch ForumsGeneral Discussion
Sweets increase my output. Chocolate more so than other things. I had a lot of trouble with pouchitis for several years after my surgery. When my surgeon found out I was eating a lot of sweets (my husband ratted me out) , he looked straight at me and said "stop it, right now". I stopped, it did slow my output, but it still took a while to find a good med for my pouchitis. If you have pouchitis, it doesn't help if you are having an excessive amount of BMs. [ more ]
My go to dessert is tiramisu! Sugar usually only increases my output if I eat an abundance of it, which is easy for me to do be I lloovvee dessert. I think I started off with chocolate pudding when I was post op, though. [ more ]
Thanks for the recipe Sharon I love trying every ones recipes Grace [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
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Hi Grace, There are a number of 'flower waters' that they use over here, Geranium, orange blossom and a few others that I can't remember at the moment. They are extracts kind of like essential oils... You can sometimes get them in specialty stores. It is sometimes call 'Mazar' and a few drops go a long way...they put a few drops in fruit salads, in hot water or tea or on a damp cloth that you can then put on your forehead when you have a headache. They also drip a few drops onto a sugar cube... [ more ]
HI Sharon What is orange blossom water? Is it oranges soaked in water because it sounds like a good remedy for stomach aches. Thanks for the tips on good smoothies and cure alls. [ more ]
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J-Pouch ForumsGeneral Discussion
This may improve with time. I always have some inflammation in distal pouch w your symptoms Antibiotics do help. I suffered a lot my first three years, but I am in fourth year now and things ebb and flow. I will also probably always have some level of inflammation and the burning does stink but calmoseptine cream does help. Good luck. [ more ]
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J-Pouch ForumsGeneral Discussion
Your body has been through so much! I had a lot of control issues before takedown as well, I remember vividly leaving a trail from my bed through the room, into the laundry area and to the bathroom.... It was as if my butt thought I might not remember how to get back to my bed. Kegel exercises helped me a lot, I've only had a hand full of accidents since takedown (almost 13 years ago). If you still feel like you're having a lot of problems after your takedown then I would head back to your... [ more ]
Take a deep breath... Yes, you are stressed, yes you are nervous and yes there will be moments when things do not go right but for the most part and the great majority of us have happy, healthy and cooperative pouches. You may need to do exercises, deep breathing, yoga and other exercises until you get full control back but unless you have a real sphincter problem or other similar longterm problem you should be ok. Just understand that befores & afters are not the same. One bridge at a... [ more ]
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J-Pouch ForumsGeneral Discussion
I have also had 5 surgeries over the past 11 years bc of UC, it's been very tough. I am happy to hear about the treatment of others. [ more ]
Yes I have chronic pouchitis now. I'm in daily abdominal pain that doctors have concluded is caused by 5 open surgeries and the scarring and adhesion aftermath. There are no physical blockages or obstructions so they won't operate because of them. I do get pouch pain too. I've gone from intermittent pouchitis to chronic. During a pouchoscope they did a balloon dilation in my pouch, just above the cuff on one side, in February. My entire pouch was inflamed and more red than usual. It looked a... [ more ]
I have chronic pouchitis, but I'm lucky enough that it stays under control as long as I'm on antibiotics (at this point it requires Cipro and Flagyl together to be effective). Are you *certain* that your pain is from pouchitis? I also take a maximum dose of VSL #3 DS, which also seems to help. By combining all three I stay well. There are other antibiotics that sometimes work well for pouchitis: Xifaxan (expensive!), Tindamax, and Augmentin come to mind. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks for the reply again but how would the ilex paste stop leaking? Is it not just to prevent irritation from leaking? [ more ]
Although I no longer experience night time leakage, for a good couple of weeks after takedown I did and a side effect of applying ilex Paste; it also prevented leakage. Not only do I apply it around the anus but also slightly inside. To prevent stickiness and the need to apply Vaseline over the ilex, I found that only a very small amount of ilex paste is required. In the UK ilex will provide free sample sachet, it's also available on NHS prescription now. ... [ more ]
Thanks for the reply. And no I haven't but I'll give it a try [ more ]
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J-Pouch ForumsGeneral Discussion
I had my ileus and NG tube experience after step 1. I certainly didn't feel that way at the time but I am glad I had the experience, because I learned some things from it about my body, and about our biology generally. Despite the enlightenment I gleaned from it, it was a truly horrific experience. [ more ]
Good luck with it all. I was so worried about the first step being so difficult as it was 6 hours and a lot being done, having said that .. I found it ok and never had any issues pain or otherwise and was home on day 7 and our bedrooms and bathrooms are upstairs and it wasn't a problem. I was a bit tender but didn't take any pain meds. Step 2 for me was not pleasant as I developed ileus and ended up with a NG tube which was only in for an hour as it coiled and I was still vomiting. After 3... [ more ]
I'm 1 month out from the 1st step, and I've been doing pretty much whatever I want to for the last 2 weeks. My surgery was done with a surgical robot, so I only had 6 small (less than 1") incisions, which I'm sure contributed to my somewhat quick recovery. The worst part is this stoma and bag. I just can't get it to work right because of the location and orientation of the stoma. Takedown is in 2 weeks though, so it'll all be over soon. Good luck with your surgery. Make sure you eat and walk... [ more ]
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J-Pouch ForumsGeneral Discussion
I wouldn't have taken her to Mexico but we booked it way before we knew she would need the colectomy. She would never have forgiven me if I canceled. I'm sure the water and food didn't help! Have a great time in Florida, a much needed break for you I'm sure! And good luck in Cleveland, keep me posted. I hope Jeff continues to get better as well [ more ]
Hi MaryBeth! Glad Lilly is doing well! She sounds like a spunky young lady. Good for her. Funny that you guys went to Mexico. When Jeffrey was first diagnosed, the doctor told us two places to never go, Mexico and China! Some of the issues she was having we probably from the trip. The resorts are fairly save as far as the food goes. Maybe having a few drinks, stirred things up. Jeffrey has a little bit of wine, he and my husband are big on the Reds so they are always trying new stuff,... [ more ]
Hi Dianne, Glad to hear Jeff is doing well and you're going to Disney! A well deserved vacation for sure! We just got back from Cancun, Lily's senior spring break. Several of her friends/families went. We had a PRETTY good time but Lily was frustrated because she really couldn't keep up with her friends, staying out late at the resort clubs. She did very well the first four days as far as BM frequency but then it started up and by the last night she had several accidents. I was so ready to... [ more ]
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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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