Yeah, what a awful way to tame this pouchitis! Ps I was worried about a second takedown but my pouch worked immediately like I never was disconnected! Thank you all...
I ate those little seeds with no problem with my ileostomy. Try small amounts at first....
Thank you all when I needed you for my ostomy. 2 weeks ago I had my reversal and it was like I never had pouchitis. My old friend my jpouch is back up and running. The Entyvio is doing its job and my...
Nothing after midnight....
It's ok and thank you....
Thank you. I'm trying to stay positive! I've really put up with more than most could indure but I really hate this ostomy. When the pouch was healthy it worked great, yes 2012 was a great year, but...
I got my first bidet as a present to myself 15 years ago after takedown number 1! At some point I need to replace my portable Toto which recently broke. I take it with me on trips. Nervous and...
Yes I taper down the sides. I've been using a slim ring with my convex....
No you have not. I had some really really good years with my j pouch even with pouchitis which was well controlled. I had many years of remission or on very mild old UC drugs. Remember I have my...
I'm going for my second takedown in 10 days. I have not had butt burn in years, 14 years out, I wonder if I'll have it after this one? Maybe I should order some cream. Calmospectine too I like. How...
I'm happy with the Hollister...
Yes I tried probiotics, VSL double , made my own yogurt, made my own kifer, paleo diet, etc etc etc. You name it I tried it. I'm probably one of those whom never should have had a pouch but it was...
I started out laying but since I started standing my leakage issue has resolved. A stoma nurse suggested this. I actually prefer laying down but I also prefer no leaks, lol...
Dec 10 is my date. Mine I'm assuming like the first will be left open and I will have to pack it everyday, yuk, that was painful. Took about 6 weeks to close up. Very nervous, very excited. This...
Best of luck with your recovery. My second takedown is Dec 10 and am very nervous and very excited even as a experienced jpouch poucher of 15 years. Why do I have chronic severe pouchitis? No one...
I use Holister and have not had any problems....
A lot of people r having success with Entyvio...
If Remi does not work you could then try Entyvio before surgery....
I meet a gal at the infusion center who was very very sick and it took 5 infusions before she saw results and has been flare free now for a year. Good luck, starting tomorrow and nervous....
sL, see if your surgeon can use you j pouch to make the k cause you don't want to lose more intestine and get short bowel syndrome. Good luck, going in Entyvio to save my pouch....
Yes, it has happened to me although it's in my disconnected jpouch. It's called diversion colitis. I've been using Canassa and fatty acid suppostories. The inflammation and such is better but not...
Im sorry Silent, yes if it mechanical then you have no choice I suppose. I hope it all works out for you. Do you have a date yet?...
Mornings are better but then it just never stops, ugh!...
A e you tried rectal meds?...
I asked my surgeon that question and he did a loop to leave me options. Yes it leaks, it's small so I need convex, but I have friends who have an end and still,leak. Some are diverted, some pouch is...
I hate this ostomy. I'm seeing my surgeon on Monday to beg to be reconnected. I'm not sure what your problems are but I would try and work them out before going to a ostomy. Removal I heard can be a...
With the Moldable you just roll it back and it will mould to your size. Watch a u tube on how it works....
Be careful if you use the Holister Flextend extended wear as the skin prep can cause the seal not to stick. Best with the rings to protect the skin....
Since my diversion I have experienced ergency, bloody mucous, fatigue. A scope showed my pouch is still inflamed. Is it diversion pouchitis or just pouchitis. GI are putting me on Entyvio. Said no...
Check out the doctors at Cornell and see if they take your insurance. I use Cornell as well....
Wearing the belt 24/7 has helped I think. I also changed from paste to a slim ring with the convex 2 piece Hollister. A clear bag so I can push the contents down instead of letting it sit there...
Most people come down to either Cornel or Mt Siani in NYC from parts of NY....
Sweet pea, I love your daughters videos!...
I'm confused? You had a jpouch removed right, so you would only have a rectal cuff. No anus so how do you still have your anus intact? Or do you mean your rectal cuff intact?...
Was it a hard surgery to recovery from? A lot of pain? How long did it take before you felt normal again and had your energy back? Did you lose a lot of weight? Thanks, I'm still struggling with this...
Guess it depends on the kind of ostomy you have. I too was under the impression that a longer wear time is better but I have a leaky crosive loop. I've been advised to change day 3 to avoid leaks....
If so, how awful was the surgery? Thanks...
I tried FT for pouchitis last year and did not work. Good luck...
Because I'm having issues with leaks my nurse told be to change the flange every 3 days, but Hollister said with the Fkextend to go 4 but I'm not getting 4 :( I hope it does not screw up my skin but...
I'm in NY and my Drs worked with a pharmacy here to make them. Yes short chain, not working, getting pain in my rear now :(...
Yes I was scoped. Canassa didn't work, now trying fatty acid suppositories. :( reversal wood work but then I would get sick with pouchitis again. It's a no win situation :(...
Not knowing what product you are using, for example the Hollister Flextend. Using product with that can actually cause the adhesion to fail. Sounds like a defective box....
So on top of all my leaking issues I now seem to have this. My jpouch is still there but can't get it reconnected. Tried Canassa, didn't do anything, now trying fatty acid suppositories. My main...
Yes the odor is disgusting. I keep a window open in my bathroom. Some days I want to vomit. The house stinks!...
I'm stuck with a loop and I can't seem to get the leaks under control. I'm only getting a day and a half to 2 and a half day wear time. I am using convex and a belt. At first I had good wear time...
Marinmom I am sorry this is happening. I have no idea but just wanted to write to tell you that I'm in awe that after 3 months you took such a trip. I'm still dealing with fatigue and leaks at 10...
Im so sorry, I was recently diverted for chronic pouchitis....
First the leaks were from the 3 to 9 o'clock position. Then I leaked from the bottom, then the last from the belly button side. I am cutting to size I am cutting it close, I tried the slim adapt...
I'm not too tall 5 ' 3" but these 12 inch bags from Contevec are killing me. How do you wear yours so you can walk and wear clothes besides elastic waist pants?...
I started back a little after 6 weeks but didn't have a big surgery just a diversion. But I'm in my 60 and still very fatiqued. I only do about a half hour and then I beat! Probably should be waiting...