Doesnt seem to matter what I eat. Its just a problem laying down flat. Its gradually getting better, insides not so sore, and sleeping better at night. Im sure I have plenty of adhesions, as my...
I had been doing really well healthwise with my ileostomy, until the other night, woke up with pain on the left side of my abdomen. Seemed to me to be a partial obstruction. Funny thing is that these...
I had my pouch disconnected 1 1/2 years ago, and am thrilled with the results. I had the j pouch for over 20 years, and it was a living hell. My pouch is so scarred in, my surgeon did not want to try...
I have an end ileo, but kinda in the same situation. My stoma retracted on me almost a year ago, and the only thing I have found to get to 2 days wear time is use the cavilon spray to help protect...
My original surgeon thought he was doing everyone the biggest favor by giving them a j pouch, and any negative question I had about the pouch was rebuffed. (This was pre internet times before I could...
My stoma is flush, and what works for me is convex flange, with 1/2 piece of Eakin seal molded around the opening, and using cavilon spray around the stoma to help protect the skin. My output eats...
Give yourself a couple months with the ileostomy before you even consider more surgery for a j pouch. If you do have the j pouch surgery, its a toss up of how it will turn out for you. They claim the...
If you get a good working pouch, you will love it. If not, then every day you will kick yourself for getting rid of the ileo. Believe me, I know all about the last part. My pouch was a problem from...
Anybody have a particular skin prep they like best. I am looking for the longest lasting one, since my output tends to eat everything up....
Dont let anyone sway you one way or the other regarding ileostomy vs. j pouch. Study them both, then make up your own mind. I think the success rate they tout for the j pouch is way too high, but I...
Since I have to change my wafers every 2 or 2 1/2 days, is there actually any benefit to my using the extended wear barriers? My output is pretty liquidy, which is why I have always used extended...
I went 23 years with my j pouch, then out of the blue, started having partial, and full blockages due to adhesions. So when the surgeon went in to work on the adhesions, he disconnected the pouch,...
I know what you're going thru. If I can just get to 2 days wear time, thats all I ask. But every day eats up too many supplies, and too much a pain for me. I have a disconnected j pouch, which I...
I wish I could help. I was just about to post the very same question as you, since mine has retracted on me. About the only thing I have found is by using 1/3 of an adapt seal ring around the stoma...
I have had my ileostomy about 6 months now, but have noticed just the last few weeks that there are time where the stoma is flush with the skin level. I notice this mainly after I have been laying...
I had UC, then finally went for 2 step j pouch surgery. Life with the temporary ileostomy was wonderful. Felt the best I had in years. Then I had the takedown. Worst mistake of my life. Put up with...
How come you dont buy supplies off ebay? Very easy to find supplies at 1/3 to 1/2 price of retail....
I had loop ileostomy, got along wonderfully, then went for the j pouch takedown. Biggest mistake of my life. Pouchitis, cramping, not a single good nights sleep, etc. Now im back to a loop ileostomy,...
Mine is above the belt, and even with my belly button. I love the location. I can tuck it in, and generally works well that way. But most the the time, i wear long henley style shirts, and let the...
I fought with this too. It would be nice to just leave it, but being hairy meant alot of pain removing wafers, and inability to get the hairs trimmed thru all the sticky gunk. The solution was to use...
I use the two piece hollister, change the wafer every two days, but only replace the bag every 3rd change. I empty often also, but it takes about 6 days before the velcro end starts to come apart. It...
My j pouch was a disaster so im biased against it. I got along so well with my loop ileo., and felt completely healthy. But then had the takedown, and endured an absolutely brutal recovery (almost...
I understand the reluctance about the narcotics. I was doing well in the hospital after surgery, but when i upped the pain meds to the max to control the pain, my intestines quit moving completely....
Was taking a closer look at my new stoma today. Surgery was one week ago. I still have the j pouch, so the stoma is a modified type of loop ileostomy, where no stool can go into the pouch. Anyway, I...
Didn't read all the replys so pardon me if I am repeating. One of the worst feelings in the world is facing every day saying to yourself "I had a wonderful working ostpmy. Why did I have to mess...
My first surgery, took 3 days for things to start moving. My recent surgery, intestines started moving the next morning, and I was able to try eating lightly by noon. Then full doses of norco pain...
Are you leaving 1/8" all the way around,(hole 1/4" bigger than stoma) or hole 1/8" bigger than stoma? If there's an 1/8" gap will the wafer swell enough to take up the gap? I'm using hollister...
Just had my ileostomy surgery, and tried changing my first pouch. Thought I had it cut big enough, but after placing it on my abdomen, there is a slight gap on the left side of the stoma, but...
Many people with digestive problems get goods results with GAPS, or FODMAP diet. Personally, if you are having problems, I would try the fodmap diet first....
Wondering why you would consider a j pouch, when you already have rectal stump problems. I imagine the surgeon is telling you that once the pouch is hooked up, everything will be fine. Speaking from...
About the only advice I can give, is do what is best for your long term health, even if that ends up meaning a permanent ileostomy. I see too many people worried about the bag on their side, self...
The worst part for me is practically every day kicking myself saying "I had a great working ileostomy. Why did I have to mess everything up by having takedown. ". There can be far worse things than a...
Sue, the reason I have been avoiding more surgery is because they dang near killed me after the takedown. What was supposed to be a 4 day stay ended up almost 2 months in the hospital, leakage,...
I was sold the j pouch as the greatest thing ever, hardly any problems ever, etc, etc. Well, I have had just about every problem you can imagine in 20 years because of it. Arthritis, diarrhea, aches,...
Is the ileo rectal anastamosis where the hook the intestine straight to the rectum, and no j pouch?...
Supernova, just remind yourself that you will need the surgery someday. It is much better to go into surgery in better health, and of your own choosing, than it ending up being emergency surgery and...
Only thing I can thiink of is if food goes thru you that fast, then your stomach and small intestine have to be involved also. You really need a good GI doctor to check out the upper end also to find...
Karen, while not exactly what you have, (if I am understanding you correctly) but there are quite a few people with j-pouches that end up going back to a permanent ileostomy. Long term, something in...
Don't take this the wrong way, but I was amused at your post. I presently have a ( failing) j pouch, planning to convert to permanent illeostomy this summer. but have had to use a catheter up the...
Dear mom, those of us on here who have gone thru what you are going thru now, can really sympathize with your misery. Maybe we can't make the decision for you about what to do, but at least we can...
Sorry for the double post on this subject, on the U.C. forum, I thought it had disappeared, and didn't realize it was on this forum instead. So I edited most of it out Anyway, they never have...
Pads are not near enough sometimes. Sometimes depends undergarments are not near enough either when sleeping. PSS: Probiotic, it sounds easy to just say if the pouch doesnt work, just one more...
Was thinking some more about pros and cons. Having an ileostomy bag leak is no fun, but having to wear depend undergarments when you are having problems with your j pouch is no picnic either. It is...
It is hard for someone like me to know what to say about the matter. My pouch is a failure, so I have my bias against them, and wish I had never even heard of a j pouch. Those who get along great...
enigmawrap, It is hard to give much ideas about recovery from j pouch, because it is not perfect surgery, and everyones outcome will be different. The sucess rate is fairly good with the j pouch, but...
To Luvfraz who asked me a question earlier in this thread, I should have been more clear. I was speaking figuratively. My U.C. is gone, but my pouch problems mimic U.C. perfectly, sometimes even...
Bebe, I am assuming the doctor was meaning that your j-pouch was giving up. Correct me if I misunderstood your post. Sad fact is that a certain % of the pouches eventually fail and have to be...
I know everyone doesn't want to go thru surgery, but there comes a time to get your life back that you can enjoy again. Don't wait until it is emergency surgery to finally decide for you. As far as...
I remember seeing my G.I. the last time, and he basically told me that the danger to your health from taking all those drugs was greater than the surgery risk. That did it for me. My only mistake was...
My colon also ached even in remission (just not as bad) letting me know that the ulcers were still there getting ready for the next flare. Then I had the misfortune to choose j-pouch surgery once my...