J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
Good luck! And feel better. I take XYZal which is by prescription. You can also take with the Claritin is Musenix or equivalent store brand. I take the XYZal, musinex and singular 365 days a year, my allergies are that bad! [ more ]
@Jeffsmom i sure will...an thanks for the info..... i will try the Zyrtec real soon if the claritan dont clear me up in a few more days...lol [ more ]
@marz thanks for the info...going to health food store to look for those [ more ]
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J-Pouch ForumsGeneral Discussion
Bodoni, A valve should never, ever leak...the problem should be that as you get fuller the valve gets tighter. So yes, there is a problem (you know that already). The hitting the side or the wall and having the end 'buckle' is not new to me...it happened a lot when my pouch slipped (no, it wasn't the valve, the whole pouch fell off of the wall multiple times) so that the valve was higher up with the pouch down lower and the whole thing led to impossible angles for intubation. Yes, once it... [ more ]
I use the Marlen 30fr catheter that has a bullet shaped tip and, I believe, slightly smaller holes on the side than the Medina. I have never had a kink when where the holes are located when intubating, but then I never force it in. If it feels like I have “hit a brick wall”, I try to relax, change the insertion angle, or try again a short time later. The only time a catheter has kinked at a hole is when I am not careful in putting it in a small case for use when away from home. I get at... [ more ]
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J-Pouch ForumsGeneral Discussion
I have a coco with the remote. Literally has been used without fail, rough math, probably 20,000 times! I do not use the fan dryer, it's too slow for my liking. [ more ]
I have tried a spray bottle also when away, not doing it for me. Let me know what portable bidet you got. We are going away in April and I want to be prepared. We went away at the end of October and I had the worse butt burn ever. Had to use the bidet and sits bath for a few days to recover! [ more ]
Thanks everyone. Oh my gosh so many choices. I decided to go with a handheld one. I am shocked to keep seeing posting on how you use almost any to none toilet paper. I hate to say it but I use more. I am socked everywhere down there. I told my husband I don't get it. The ones that says this are the ones who don't have a heater either. I also finally broke down and got a portable bidet also. I have carried for years a portable plastic container in 2 sizes and try to spray up there but that... [ more ]
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J-Pouch ForumsGeneral Discussion
Grandmaof1, I've had my J pouch for two months [ more ]
I was told not to have formed chunks. Because sometimes then you have to push and was told to never push. Maybe you are using to much medicine or fiber. Sadly the medicine you have to work out for your body and demands. I'm more liquid. I'd prefer to be runny, then it comes right out and I can feel it and I know I got it all out. My doctor said well if you ever figure out how to get that everyday then to let him know. I guess everyone wants the same thing. But not for sure. Sorry for all the... [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks, Scott. Bodoni, I think it looks beneficial. I'm actually going to order some. So thanks. [ more ]
The whole product label is here: Forvia Product Label [ more ]
No...its a product I haven't heard of before with a brand name. I've had "pyramid scheme" people try to sell me isagenix. I wanted to know if this is like that. [ more ]
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J-Pouch ForumsGeneral Discussion
Most J-pouchers need no accommodations like this, unless traveling after surgery, but thanks for sharing this for those that do! [ more ]
Thanks. I am traveling by air for the first time in April, sine my takedown 6 mos. ago. I don't really have any issues so far, but have heard that traveling can make things more difficult. Definitely will be looking into this. [ more ]
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J-Pouch ForumsGeneral Discussion
A hour and half...... aren't you at all concerned about the amount of time you're spending in the "restroom" ? If you're gaining too much weight regardless of what comes out during a visit to the restroom, then it shows your just absorbing nourishment from your food. The only solution, regardless as to whether you've had your colon removed or not, is to eat and drink less, especially cutting out junk foods, fizzy drinks and reducing your sugar and alcohol intake. or Increase your level of... [ more ]
I'm in the restroom for an hour and a half after I eat and I keep gaining weight what's the problem [ more ]
I'm not sure how much small bowel you have left but could you be experiencing some component of "short gut syndrome"? I might suggest that you see a dietician who specializes in GI issues AS WELL AS a sports physiologist. Merry Christmas Michelle [ more ]
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J-Pouch ForumsGeneral Discussion
Apparently it's to fill the void left behind by the pouch being removed. I'm still having the Anus closed but, it's going to be packed with the two inner muscles from my thigh. I had never heard of this either but apparently it keeps the rest of the small Internal organs from sinkimg down. [ more ]
Res, Is this because you are not seeing the anus closed after removing pouch? I too have never heard of this before. [ more ]
Interesting. I didn't know they did this. Is this for some that had their Pouches removed after many years of having it? Richard. [ more ]
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J-Pouch ForumsGeneral Discussion
I believe only forum moderators can delete whole topics (which is what you do when you delete a topic starter). That said, this is a good post to leave up because it is a good reminder for all of us. Thanks for coming back and letting us know your outcome. Glad you are feeling better! Jan [ more ]
I went to the ER to get fluids .. really had no choice. How do I delete a post ? Lol not a comment but a post thread? [ more ]
How are you doing now? Has it slowed yet? I know that this is unconventional...but if you have a motion sickness medication (pill, patch, liquid, chewable...) see if you can get it down...it slows the peristaltic rhythm and allows your body to ease up on the output long enough to rehydrate a little... They have been giving it to me here for 35yrs for the same reason and started back in the '70's as a way to control 'chronic gastro'.... But please, listen to Jan's and Scott's advice...do not... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Hello, Hattie. My j pouch is also because of cancer. A month or so ago I had sudden and severe pain, it struck like lightening, almost bringing me to my knees, and lasting several minutes. I feared it was cancer again. I researched and found the following information describing the pain. It eased my mind to know what it is, and having the all clear after my scope in December was a relief too. See below, taken from the Internet: Rectal pain symptoms The pain of proctalgia fugax is sudden and... [ more ]
I have same symptoms and can be caused by anal sphincter muscle spasm from straining or increased bowel movements. Dr. Has me use nifedipine ointment on the anal opening to relax the sphincter muscle. Others on this site have mentioned they use diltiazem ointment (which is a drug of the same class and mechanism). Nifedipine/lidocaine ointment is a compounded medication so needs to be made at a compounding pharmacy. Some university hospitals make it. [ more ]
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J-Pouch ForumsGeneral Discussion
@UCWarrior2010 ah I really hope it does! Thank for responding so soon! I will try the juice @JordySimo I'm 4 1/2 months post takedown. It's good to know I'm not alone. The strangest part is I'm on no Immodium or any medication and have this issue. Best of luck!! [ more ]
I'm 3 months post-takedown and strain on the toilet, but I don't just sit down and strain really hard, it's more like a little push, but when the stool is passing, I naturally tense up. I've had no problems by doing this and my surgeon isn't concerned by it either. When I was taking 6 imodium tablets a day, the stool was really thick, resulting in formed pellet like stools. Now I've reduced it to 3 a day and also sip on apple juice through the day, it has loosened up and become easier to... [ more ]
Hi Jeff, I am sorry that you are going through this. I was having this issue a while back so I don't remember precisely what worked. But, yes, I did find relief. It's been four years since my JPouch surgery and things have been good for the most part. So, while I don't remember how exactly this issue was resolved in my case, I can tell you that this is a temporary hiccup. I'd say try some of the suggestions that have been offered here. For example, have apple juice with each meal. Even now... [ more ]
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J-Pouch ForumsGeneral Discussion
Hi Roger, That sounds pretty normal to me. Most surgeons do not close up the old ostomy or stoma site. They leave it open to drain and to 'granulate in', meaning that tiny granule-like particles develop (they are white and look like tiny little spots) and slowly come to build up new tissue...the grow from the inside out and build up towards the surface. Although we all heal at different speeds depending on our state of health and our biology most of us take from 2-3 months to heal an old... [ more ]
I'm just over 3 months post-takedown and I was also left with an open wound after my surgery so that it could heal from the inside outwards. The district nurse came to my house every other day to change the dressing. I still have a tiny scab on my wound which does not want to budge at all. The amount of purple on show is slowly getting smaller and smaller because of the new skin forming around the edges so I'm not worried. It was a big wound, it'll take a lot of healing. I still wear a... [ more ]
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J-Pouch ForumsGeneral Discussion
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My bm's are bit too ... explosive (apologies for the graphic nature of that description) ... for me to feel comfortable to use the sort of toilet that is in the floor. I also went looking for western style ones in the East. Sometimes I succeeded (usually it was a handicap toilet) but sometimes i just had to deal with it (which I hated). I am huge fan of squatty potty. I know they sell an inflatable one but I have not tried that. I travel quite a bit and when necessary (in the comfort of my... [ more ]
I've had some worse experiences. Like, in Hong Kong and parts of Singapore. If I have a lot to get rid of, though, I've never had any cleanliness issues. Biggest issue is I feel like an old man trying to stand back up. That's a perk, though. If you're using a squat toilet so often, it builds up some extra knee strength. [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks for the responses Jan, Linguist, Canlafre, and Bluebirds. Much appreciated. I have not yet tried weekly injections; obviously this is something my GI might look at. I am due for another 'maintenance' Humira injection today. 3 nights ago I came down with a bad cold with headache, night sweats, the chills, etc. Not sure about a fever. Just tried calling my GI's office to speak with someone but was unable to get a hold of anyone there. I assume I should take my dosage as usual but just... [ more ]
I noticed a huge difference when I switched to weekly injections. Have you tried that? [ more ]
I have now taken 5 Humira injections since late November. I have not noticed any change in my health condition for better or for worse. I know that it is important to give it more time. My doctor said that I should notice a difference by the 3-month mark if the drug is going to work. Does anyone have experience with Humira working well but being very slow to seeing positive effects? I'm starting to lose confidence that it will help. My doctor stated that when I get a scope done next, he'll... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
The Metamucil powder is sweeter than I care for, so I now mix a half-dose of Metamucil with a half-dose of Konsyl original. All the powders mix much better if you shake them (rather than stirring). [ more ]
The powder works really well for me too and I would do that over the capsules. Also, in buying another bottle I wanted to be cheap and save $10 so I bought the off brand kind (quite a difference in price!). Unfortunately, it doesn't work as well and actually has done kind of weird things with my stools. Back to the good stuff...lesson learned for me. [ more ]
Ok thanks. That's good to know [ more ]
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J-Pouch ForumsGeneral Discussion
Hello, Knorrboy. I am 12 months after my colon removal, and 10 months after reversal. In the first few months it was rarely the same one day to the next, and I realized it depended on what I ate, and when. A big breakfast at 7am might produce some loose results by 12noon and it might be "fragmented" pieces, small like so many pieces of Legos! My surgeon told me to expect fragmenting for some time until my eating habits returned to normal and I was able to re-introduce solid food with fibre,... [ more ]
Very strange. I have noticed that these occur more when my diet is not so strict (soda, junk food, greasy items) but it is not as consistent as I'd wish. I have my one year colonoscopy checkup in a few weeks. These just make me worried that something has come back but, with all other levels are within norms, I'm pretty optimistic thanks for the reply. If anyone else has some insight, it would be appreciated! [ more ]
I am down to around 4 BM's a day too and I have experienced similar frustrations! Sometimes there is a large bm, followed by smaller ones, sometimes it is different colors, different consistencies.... Obviously what we eat has something to do with it, but I haven't found a lot of connection to bowel movement size. Sure, some foods don't work, but that doesn't seem to always be the issue. I agree that I don't think it would be a blockage. My only other thought is sometimes if I haven't been... [ more ]
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J-Pouch ForumsGeneral Discussion
I just had 2 emergency mri's for rectal abscess and fistula. I presented to the ER with intense pain and a funny, ropey bit of tissue on my perineum. The surgeon knew exactly what was going on and I was admitted, started on IV antibiotics, booked for an MRI and then scheduled for the OR for an incision and drainage of the abscess and fistulotomy. The MRI takes about an hour. I'm home now and recovering nicely. Hope never to,have to go through that again. [ more ]
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J-Pouch ForumsGeneral Discussion
Jordy, wouldn't worry about it mate. As you know im in a similar position (3 months out with the same purple scar and same releuctant scab (i think there is a stitch right underneath, hench slightly slower to heal). Ive been swimming and having a bath for weeks. Mind you i have also been using bio oil, and those Chinese vacuum cups (used for massage, they suck the skin into a cup using a vacumm, intention is to get the blood flowing to the scar). tbh i doubt thats made much of a difference... [ more ]
When mine got to this point, my surgeon said to soften the scab with water while in the shower and pick it off! Made me a little nervous but I did it anyway. That was at about 2 mos. out. No issues with it at all. [ more ]
I think at the point your scar is at the point where you are more than okay to take a bath. It sounds like your scar is healing pretty well! As long as it is a closed wound, my surgeon didn't seem to think soaking it would bother it. I was so glad to take baths! [ more ]
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J-Pouch ForumsGeneral Discussion
I don't know if hormone therapy disqualifies you. Sounds strange to me - but you never know about interactions. You could e-mail or call Fred Kahn from the website bioflexlaser listed above to find out. [ more ]
I have heard of similar laser treatment here in London. I was seeing a podiatrist to get orthotics for my shoes and he said I was not a candidate for it because I am on hormone replacement therapy (for menopause). Seemed crazy to me but I haven't researched it further. [ more ]
I have read a great deal about low level light lasers for treatments of inflammation and pain, I have only been able to locate one medical doctor in Canada who does this - but none in the USA and I live in NJ, close to NYC. But I have heard the Europeans are more advanced in this kind of treatment so you might check around in Paris. Its painless and I have heard results are permanent and it doesn't take that many treatments. The link below is to the clinic in Toronto so you can see what it... [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks everyone for your comments. Most helful Mary [ more ]
I was able to tolerate high dose ibuprofen for years to treat my various tedinopathies. That is, I tolerated it until I didn't. Eventully, I developed liver inflammation and pouchitis. I had to discontinue it, and the resulting flare of back pain led to a rheumatology consult and a prescription for biologics. The good news is that damage caused by NSAIDs is reversible. Jan [ more ]
I didn't know that IBprophene can cause pouchitis. I know that it is responsible for gastritis, bleeding in the stomach, other stomach irritations etc. I have been taking IBprophene for quite a while, for serious joint and muscle pain but I have never had any problem with pouchitis due to its usage. I usually hear that short term use is fine but that it should not be taken over time. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
For me, not really. I asked my surgeon about it one time and he was surprised to hear it but thought about it and came up with a diagram on why it would feel that way, of course I didn't really understand it, just I guess for a few people laying on your side puts your pouch in a position that makes you feel like you need to go. If I go to bathroom in the middle of nigh I might be able to lay on my side for a couple of hours before the feeling hits but I mostly stay on my back. [ more ]
@Twilight I experience the same urgency when I lay on my side but not on my stomach or back. I am 4 months post takedown. Does this feeling ever go away? [ more ]
Something else to think about since you said it was at night. I always have to sleep on my back at night, the minute I move on my side it feels like I have to go to the bathroom and if I do go it's just a little bit and gas. For some reason it puts my pouch in a position that makes me feel like I have to go so I just stay on my back and I can sometimes sleep 9 hours without a trip to the bathroom. [ more ]
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J-Pouch ForumsGeneral Discussion
I have found that pure grape juice in small amounts will clear the way. Drink it slowly. My GI doctor had never heard of it so he looked into it and it's the ingredients that break it down. But honestly I always have it on hand and freeze it small amounts. And sadly I can't remember if it's the sugar or something with the grapes. I'm sorry. It was a long time ago. It does work like a charm. I hope this helps you out. sorry I can't remember the details. [ more ]
Walking, stretching, rolling from side-to-side on the floor or on a yoga ball, doing very mild yoga or pilates, hot baths, massaging the zone with hot oil (helps the hands slip over the area easily), hot green tea (unless you are throwing up), walking again, bouncing up and down on the balls of your feet, bouncing on a yoga ball, bouncing more, keep bouncing, walk some more, use a heating pad... When all else fails, I wait 24 hrs before heading out to ER...most often it breaks up by then . I... [ more ]
Massaging in the place you feel the blockage is always helped me. Sometimes doing this whilst lying on your side also helps but other than that, just go for a walk about or something. [ more ]
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J-Pouch ForumsGeneral Discussion
I use the barrier rings and not the paste too. I had a horrible time with my skin and went to the local stoma nurse as well as additional appointments with the Mayo Clinic Stoma nurses. Mayo is 3.5 hours away but that is where my surgeon is. Both local and Mayo nurses have me roll half of a thick ring into a worm like fashion and use it instead of the paste. I put the "worm" around the opening and press it down a bit before putting on the appliance. Hopefully changing to this will help your... [ more ]
Thank you, I know it's normal to bleed but since I had a blockage it has been swollen and blood is larger around the stoma, it's not the normal blood you would usually see. I also have a imprint of where the seal is made on my skin, but idk if that's just where I have had my stoma since November 8th, 2016. My take down is at the end of February so I hope all goes well. It's just been painful taking off my wafer even with my adhesive remover spray. I guess since my skin is so irritated. I'm... [ more ]
In addition, have you tried stoma powder? I use that and a barrier spray. When skin is bad apply stoma and then the spray several times to protect your skin under the appliance. These are both sold on amazon but your stoma nurse or doctor can prescribe them for you. It depends on what your insurance will pay for. My stoma bleeds some. I think some of it is normal. Mine also can get larger. If yours gets really large then putting plain white sugar on it will help to reduce it in size. I read... [ more ]
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J-Pouch ForumsGeneral Discussion
Urgency/feeling uncomfortable, for me is also usually between these times as well. Once I give into it, I am good for the night. I also take 2 Immodium around 10:00 and usually good until the next day, anywhere from 11:00-2:00, depends on the day. My frequency is higher the latter part of the day. [ more ]
Thanks for the comments, everyone. I took on board a couple methods and leaning back really does help get things moving. I also bend forward on the toilet and put my head between my knees which also helps. Just like Bobish mentions, I also get off the toilet, but ten minutes later I'm feeling the need to go. Hopefully this will eventually disappear once my urgency settles. I can cope with certain urgency for hours but it just puts the thought in my head that I need to be near a toilet at all... [ more ]
Jordysimo.... Im in a similar position to yourself. im 3 months out from my reversal, and like you things are fairly good with regards to frequency (5 times a day ..ish, but i wake 1 or 2 times a night) i dont really have urgency (i mean i can hold for hours), but i do feel like i always need to go to the bathroom. For example i have just been to the bathroom, its feels as if i need to go again already, but i know i will be fine for another 5 or 6 hours at least... but the sensation is... [ more ]
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J-Pouch ForumsGeneral Discussion
Thank you for your encouragement! [ more ]
I had Pancreatitis twice,and jpouch, I'm scheduling gallbladder surgery today! [ more ]
aka KNKLHEAD , yes, let's just get rid of all the ticking time bomb organs. They are such pests. Anyway, really glad you didn't notice a change in output. It's such a fear of mine (followed by wondering how long it'll take to get back to regular exercise post-op)! I don't need my toilet life to get any more complicated or annoying. skn69 , it definitely wasn't a cardiac thing. I'm young (29) with a very healthy heart (excellent diet, lots of aerobic exercise) and no history of any problems... [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks!! [ more ]
Dr. Karuda at UNC is a phenomenal J pouch surgeon. He does 3-4 a week. Dr. Hans Herfarth has a clinic at UNC solely for J pouch recipients on a Wednesdays. I live in Charlotte and drove the 3 hours to UNC for two years of visits but I finally decided to see a doctor here in Charlotte Bc the drive is too long since I'm doing well these days. The doctor I see is John Hanson at Carolinas Digestive Health but I was also recommended to see Dr. Mohanty. [ more ]
I am a 39 year old male. Names? [ more ]
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J-Pouch ForumsGeneral Discussion
Poucho, Even if your dysplasia was in a removed part of your gut, you still have the history. This means that your genetics are such that you are at more risk than someone who never had any evidence of dysplasia. Jan [ more ]
Thanks, Scott. I will have my first this summer and expect to pay 20% of the contracted amount with Tricare. The first will be with my surgeon and I am hoping he will do them for a little while before I have to find a GI that I have confidence in. My last GI doctor and I have parted ways due to his non aggressive treatment of my case. I will also be eligible for Medicare and Tricare for Life 2 years from October so hopefully this will cover most of the cost. [ more ]
Thank you all for your input - this is very helpful. I truly appreciate having this forum as a resource. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Anal pain was often my first and primary symptom of pouchitis, later followed by night time incontinence (but I have a bad sphincter, so with a good sphincter the anal pain alone could have persisted for much longer before nighttime incontinence would have set in). Lots and lots of treatment options, but agree you need to get a proper diagnosis first. Dont let treatable symptoms get in the way of living the life you want to live! [ more ]
There is several other treatments. My Internist looked up the textbook treatment and prescribed for me once. Anucort, hydrocortizone is a good inexpensive suppository and Canessa is the expensive Mesalamine one. There are also enemas. I could never get it fully under control even using both types of suppositories daily. I am not the normal case as my j-pouch ended up failing. [ more ]
It's best to get a proper diagnosis before treatment, although in some cases treatment can be the best way to confirm a diagnosis. I wouldn't usually put cuffitis in that category. The fact that mesalamine failed to control your UC isn't good news, but it's also not a guarantee of failure for cuffitis. You can essentially bathe the rectal cuff in mesalamine, which you were never able to do to your colon. The side effects of mesalamine tend to be much less troublesome than steroids, which is... [ more ]
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J-Pouch ForumsGeneral Discussion
Hey, 07KRO. I had the surgeries a few months after I finished university - actually had the colectomy on my birthday. Takedown was a month later. In-patient recovery was about a week, but I was in the emergency room just a day later. Complications from ileus kept me in the hospital for another month. Basically, my intestine forgot how to work and wasn't moving anything through. I'm not sure how common the problem is, just that there's a chance with major GI surgery. Three weeks after that... [ more ]
I am actually in a very similar situation. I was living abroad but had to go back since my ulcerative colitis was acting up, they found dysplasia, and it was decided that I needed surgery. I wanted to get surgery in my home country, so I went back. I have now had my first surgery (out of 3), where they created an end ileostomy. Things are going well, but I feel that I probably want to go ahead with the rest of the surgeries soon. I wanted to ask how long you waited after your final surgery... [ more ]
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J-Pouch ForumsGeneral Discussion
I've been taking benzodiazepines for a bit over a couple years for anxiety and sleep. I can echo what was said above. 1mg is a tiny dose; I'd be surprised if you had any withdrawal issues. Any symptoms would be very minor, if noticeable at all. Also, there are a lot of alternatives to lorazepam. If you wish to continue with the same type of treatment, your doctor will know a variety of similar and affordable meds. [ more ]
Lorazepam is generally a prn med, meaning you take it as needed. I've been prescribed Lorazepam at varies times in the past (although never on a long term basis) and I've never had a problem coming off it. As Scott mentions, it would depend on the dose and how frequently you used it. If you were only taking 1mg a day, here and there, yes that is a very small dose you probably won't have any issues stopping the medication. However, since it has been prescribed to you for a number of years, it... [ more ]
Grace, when you write that you're taking 1 mg, how many times per day is that? If it's 1 mg per day that's a very low dose, and you're likely to have excellent success withdrawing from it. [ more ]
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J-Pouch ForumsGeneral Discussion
I get it from my local health food store. It's pricey - I think about $40 a bottle, which lasts one month, but is totally worth it to me. I just try to think of it as a co-pay for a brand name prescription I believe you can find it online if it's not in-store near you. I've definitely had way better luck with it than with pills. [ more ]
Good to hear about the Floradix iron and herbs. Where do you get it from? I often wonder if the pills I take are absorbed. [ more ]
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J-Pouch ForumsGeneral Discussion
does anyone elses midline scar stay close to their body? like tight and up close? I have seen photos of overweight people where the midline scar just follows the curves of the stomach. it seems if I got a big belly the fat would just accumaulate around my scar?? [ more ]
I have had about six surgeries where they dove into my stomach. (I lost count!) I have a small gut, but the surgeries have all but made it so I'm not going shirtless any time soon. For the last surgery I asked the surgical nurse about "cleaning it up, doing a bit of Lipo" as a joke and she said, "welcome to your new stomach." In other words, not too much can be done. I think the best I can do is try not to put on weight, keep the fat content under control! [ more ]
All I can say is I had a nice smooth flat belly before. I'm slim also. It's all screwed up after four surgeries let alone ten! Lumpy bumpy. I have a thin crater scar and no belly button but pushing 61 and being married 39 years. We don't care. Lol. I have a small spot that has not healed from the removal of my pouch. After 15 months! Well I went in yesterday and she cut it open again. Not the first time. But she asked me if she could cut to the side a bit. Didn't want me upset at the way it... [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks folks. Ya I want to continue to play hockey goalie so a pouch is definitely on my mind. First surgery done but I was hesitant to accept a Feb pouch. [ more ]
I agree with the Scott. It has been said before that most of the people that are doing really well aren't online. J pouch surgery can often be a real positive thing. Even with my problems with pouchitis I wouldn't trade my pouch. And I am still in the adjustment stage! [ more ]
The substantial majority of J-pouchers have few problems and are pleased with their results. The others (or at least many of them) come here for support. This is a great place to find out what can go wrong, and a terrible place to find out how common those outcomes are. [ more ]
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J-Pouch ForumsGeneral Discussion
Some folks limit their diets to clear liquids the day before. This help keep the pouch from getting new "deposits" after the enemas. And yes, just tap water enemas, comfortably warm water. [ more ]
I found that two and sometimes 3 enemas did the job and the water does not have to be very warm. Once your output is reasonably clear, no more enemas are needed. [ more ]
I use one fleet enema followed by one enema w warm water. I too get burning w fleets. I've never had an issue and have had nunerous scopes all with very good visibility. No food or drink after midnite. [ more ]
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J-Pouch ForumsGeneral Discussion
Good advice, I find where the most private bathrooms are when I can. [ more ]
The best advice I can give here is simple - use the disabled toilet so you have more privacy and can relax. No need to worry about noise then. I always do this. if looking for a new job, toilet facilities are a major consideration for me. [ more ]
Anyway you can. Fan, faucets, loud coughing sounds. Anything is better than screams of pain!!! Feel very fortunate if no one has heard you yell in agony during one of those episodes. Which reminds me: Stay Away From - "Bear Naked Whole Grain Energy Bars" or any whole grain strong fibers unless you want to invite one of those episodes. The energy bars are very small yet dense and make you feel overstuffed; like you want to go now but you really don't even need to. They also put one of those... [ more ]
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J-Pouch ForumsGeneral Discussion
So here is my experience, and my husband's, and my son's (we all have UC). The 100% covered colonoscopy is for routine preventative care (and at the same frequency, like every 5-10 years). Once the procedure is for monitoring a known condition or for diagnosing symptoms, it is not routine preventative and is not coded as such, even though there is a preventative component. That said, at least my premium rates are not based on my diagnoses, but only age and zip code (at least for now). Jan [ more ]
You're absolutely right! Especially because it should be considered preventative, in my case I had dysplasia prior to my surgeries. [ more ]
It's just wrong if I have to pay for an annual pouchoscopy if colonoscopy is covered 100% after age 50. How is that fair? [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
I was going to get scoped one time. My second scope many years ago. I walked out and never went back because the toilet was plugged and over flowing and they didn't do anything about it. Best decision I ever made. Found a really good gi after that. It was just disgusting. After just getting cleaned out for the scope and feeling like. Well. Crap. You have to have a toilet. Not one full of someone else's mess. Richard [ more ]
Hi Grandma, Well, I can commiserate, I understand and sympathize. It is a long fight which never, ever, ever ends...some days I want to let go and slide into endless sleep...but then I remember days like yesterday when my granddaughter slept over for 2 nights so that I could teach her how to cook...housebound, in pain, standing on my feet for 2 days cooking, baking, kneading bread...with a smile a mile wide the whole time as she declared that she had never been prouder of herself (and her... [ more ]
Thanks, Jeff! I needed that! And.........my TOTO toilet with bidet seat is my most prized possession! No one but me uses it! I've had it since 2004. [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks. I was sent home Sunday afternoon. Removing the packing was unbelievably painful. I ended up sitting on the Sitz bath with nurses giving me dilaudid IM. Oh Lord. It finally came out 3 hours later during another sitz bath. Whew. I am home now and very sore and quite nauseated. Tylenol #3 makes me feel quite sick so I'll just stick to Advil. My pouch is working well and my neighbour is bringing soup and muffins. Life is getting better. The surgeon said that the fistula and abscess had... [ more ]
Hang in there! We're rooting for ya! [ more ]
I finally went to the OR last night about 5:00 pm where they did an I&D of an abscess. Waking up from the anaesthesia was a nightmare of shivering and pain. However, nice warm blankets, a comforting nurse and a whack load of fentanyl and dilaudid fixed most of my problems. I have packing in my bottom end and am waiting for the surgeon to come in to tell me exactly what they found. Hoping I can go home after I have a poop, just to make sure everything is working down there. Being NPO for... [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks so much for sharing your thoughts! Sounds like a strong recommendation. :-) Yeah, I guess S-pouches really fell out of fashion, huh? [ more ]
i think very highly of dr. joshua korzenik, who is head of the crohns and colitis clinic at brigham and women. he is highly respected by other docs, very considerate, puts the patient first. can't speak to the pregnancy issue, but he knows everybody and would refer you to another doc if he thought that was a better option for you. good luck and keep us posted. not many S pouchers out there, as far as i know. i'm a K. janet [ more ]
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J-Pouch ForumsGeneral Discussion
I tried everything to save my j-pouch but my GI at the Mayo Clinic scheduled an appointment with a wonderful surgeon there. We all discussed my future and my not wanting it removed as Bill said above it is a major life decision. She first diverted from my j-pouch to a permanent ileostomy. My j-pouch didn’t settle down so I had it removed 7 months later. I am glad I made the decision in 2 steps as I found out the permanent ileostomy was 100% better than my temp one was. I am glad I had it... [ more ]
I have had two pouches, but some length taken from the small intestine each time. I had a pouch redo from Dr. Remzi, and I'm doing well. I weighed as little as 160 when I was in between surgeries, but now at 190, feeling well. I hope that helps! [ more ]
Chris, my initial thoughts are to do whatever you can to save your j pouch. This might entail having a consultation with a doctor who has lots of experience in dealing with pouch problems. Once your j pouch is removed and your bottom sewn shut, there is no going back. If you would list the problems you are having, others on this forum could offer suggestions. In my case, recurrent high grade dysplasia in the anal cuff and a malignant polyp made removal of my j pouch necessary. I strongly did... [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks Jen, yeah I wish there was a way for us all to escape this miserable dilemma. [ more ]
Thanks again, CTB23! I'll look it up. sorry, Scott. I know. It's very frustrating. You're not alone. Hang in there. JenB [ more ]
Hello Jeane, If you ever want to talk, let me know. Not sure where you are in CT, so if you want to PM me that would be great. It would be nice to share information/experiences with someone close to home and close in age. I have my sister, but don't know anyone in the area that has been through this. Thanks, Chris [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Dr James Lindsey at the Royal London is also fantastic. [ more ]
Hi, I moved backed to the UK, after living in California and had my jpouch in California. I now having been going to St Marks Hospital for over 14 years and they are absolutely brilliant. You do need to get a referral from your local GP and they do private insurance too. [ more ]
Thank you very much. This is very helpful. [ more ]
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Join Us!
Founder, Creative Director & Web Master
William J. Johnson
bjohnson@j-pouch.org
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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Jan Dollar R.N.
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