Just popped in for a peek for old times sake... I have an ileostomy and have not been here in ages (and will disappear again for ages) because I basically have no issues whatsoever with ileostomy...
another probiotic- actually a beneficial/safe form of yeast, that is, I believe, completely impervious to antibiotics and hence a good thing to take during the antibiotic regimen, is sachromyces...
If you are having issues with ballooning gas and/or noise in the months just after surgery, rest assured that is very very normal at that stage and no reflection whatsoever of life down the road....
fyi ostomysecrets is having a half price sale today 8/24 on anything in white... Good time for anyone who wants to try, or to restock up....
I love love love Ostomysecrets, which are custom made with an inner pocket for the pouch. I'm male and use the male boxer briefs, which are like athletic or bike shorts in snugness and style. My...
I cannot speak for jpouches, as I opted for ileostomy, but I can say that my QOL is the same as life *before* I had UC, not lower. I am completely unrestricted in diet and physical activities now....
I cant comment on all the many, happy people with jpouches, since i opted never to pursue one after step 1'of a step 3 jpouch, and kept a permanent ileo instead. I will say that in my own, personal...
just wanted to add a few tips that help prevent leaks/extend the life of my seal.... (I use 2 piece setup with Hollister pouch and new image wafers, and eakin seals): (1) Before starting the wafer...
yeah clinically a bit of mild diversion uc in rectum but symptomatically zero, literally zilch, nada. a daily squirt of brown mucus that is always voluntary but is my poor man's excuse to briefly sit...
Hey nicecuppa from pro... sorry I never got around to shouting out to you on the thread a month or so ago on evalou's thread, as i barely poke my head in here any more. one of these days I may get my...
Hi Eva Lou! great to hear from you and fwiw, somewhat similar experience for me. I am pretty much never on these boards any more because life is so normal for me with the perm ileo, essentially like...
M9 drops (a squirt rather than just a few drops is what I use) is extremely powerful, essentially knocks out all odor when you empty. my insurance only pays for 1 x 8 oz bottle per month , so I buy a...
Count me in as another person who is ultra-satisfied with my end ileo for UC (chose it, didnt ever want jpouch though I technically remain eligible, as I do still have a rectal stump which I get...
Maybe blueheron will chime in- she uses two piece but I recall from her blog that she adds tape around the outer adhesive. Another thing you can look into are "sure seal" outer seals that seem to be...
I shower a minimum of once a day, and when I workout heavily I often shower twice a day. The showering has no discernable effect on my wear time. Well, I suspect if I was to shower every other say or...
I kept my rectum only because my end ileo (which will now, by my choice, be my permanent ileo) was intended to be step 1 of an optional 3 step jpouch. Since I swiftly abandoned any desire to ever...
Well, after one has fully recovered from surgery there are pretty much no diet restrictions whatosever. However, I use common sense. I am over a year and a half since my surgery and I have zero...
Kari, I have said before and I'll say it again -- for me quality of life with an end ileo is essentially identical to life pre-UC. The end ileo has a negligable impact on my quality of life. I do...
http://www.israel21c.org/headlines/using-parasites-to-fight-autoimmune-diseases/ " Shoenfeld and his team set out to mimic the helminth secretions that suppress a host’s immune system. The compound...
I "fought" off surgery for over a decade of time in which I had full blown flares a couple times a year and miniflares ten times more often, all the while managing to fake a normal life but with...
Hmm, it is entirely possible this is a massive IBS in your stomach and small gut caused by extreme anxiety/depression. OTOH, how many meds do you now take? side effects of drugs, say...
Lol NCOT, dont forget, in the zombie apocalypse it would be ezsier to cover oneself in feces and thereby trick zombies into passing us by, thinking we are rotting corpses, wit the output from a two...
Sunny-- wow, that is great to hear that you have an ostomate for a stoma nurse... You cant do better than that! Re hollister velcro ends, that is what I use and I agree re the sharp corners being...
ncot-- purely answering your question as to how to change a pouch allone in a 2-piece system if the stoma is active at the time: the answer is, with practice, no issue at all. I have done it a number...
@Ncot- swapping out a pouch doesnt mean carrying it all day- just dumping it in trash at first opportunity. that can mean instantly in some situations. obviously no chance to either empty pouch or...
I can't imagine putting up with a one piece, for the many reasons mentioned. Here's yet another advantage: two pieces allow you to swap out pouches in seconds in situations where emptying may not be...
Well, not everyone wants a joouch, for me personally no UC at all was best choice, end ileo that I have is next best and jpouch was my least favored option. My quality of life with the ileo aka "bag"...
Absolutely no difference in feeling except for total absence of IBD pain/weakness/urgency etc feelings. I do still have a rectum and squirt out (totally voluntarily) a bit of mucus about every 48...
Oh no, did they put you on an NG tube? :( that is rough-- been there, done that for ileus a few days after I was discharged after surgery... It will all be past soon but is certainly very uncomfy for...
I was scared witless and tried to avoid it for ten years (even cancelled surgery once then reacheduled) but it turned out to be best decision I ever made... Wish I had done it early on in my UC...
Best wishes, bluegrass!...
Hi Rabbit-- I had a nasty, severe albeit short (start to finish within a week) head/chest cold a few weeks ago but none of the heavy duty OTC stuff ( incl dayquil and nyquil and various lozenges)...
Just remember that an airplane is at home in the air. It's on the ground that it is ungainly. Once in the air an airplane is in its element. The bumps are no different than a boat moving around on...
My experience mirrored Eva Lou's. I got into a mold of feeling proud of myself for over ten years of suffering constant simmering and flare after flare, mini flare after mini flare, "fighting" off...
Hey, nicecuppa, Thanks for posting and I am keenly interested as I am a fellow rectal stump owner who, in my case, has been procrastinating getting a scope and biopsies on my own stump. I think I...
40 mg too but i was also a "lightweight" lol....
Lol. When one sees business addresses for these sort of wonder supplements in what looks like some apartment in a fort lauderdale apartment complex, alarm bells should go off. Sad to say it but south...
I tried it years back when they marketed it under another name, I think it was then calked Molecure. No results whatsoever for me when I took it as indicated for one month. zero effect. No side...
I wouldnt beat myself up over it. As was posted, any study results based on patient assessments as opposed to endoscopy are meaningless scientifically anyway. If you know you are getting the drug...
Sorry to hear that rabbit but the quick effect of cipro on it is a great sign surely, and you may not see this again for years and years. Do you take any VSL3DS or anything ? I think probiotics have...
i am skinnyish and i rarely ever have a bulge that anyone would notice. sure at home i will let it bulge but when out after morning emptying it us usually 6 hours or more before i'll remotely need to...
You have certainly come to the right place to bounce of your thoughts. I am like you with a rectal stump and an end ileo, but I am lucky that I have no issues whatsoever with my rectum, knock on...
When I used to take pred, I found that splitting the dose made life much more tolerable, instead of feeling like hell at night when the pred had worn off....
I live in the states but we get CBC radio late night on NPR and I was listening to an interview of a quadrapalegic Alberta Member of parliament who was pushing, against heavy resistance, for right to...
Though never officially diagnosed as also having IBS-D in addition to my IBD-UC, I had bouts of urgency with D and constant pain even when in semi remission and often even in full remission, and...
Good tip. My pet peeve is the same as that for Ucers and jpouchers too-- low flow toilets! Ends up requiring just as much water as a regular flow by the time one flushes it a few times lol....
I use hollister with the tape and dont have any issues. I like the way the tape is an added security to keeping the wafer snug. Occasionally towards the last day or two of my wafer cycle it will itch...
Yeah OM, nothing spectacular from my worm attempts years back. The only one that seemed to dampen the UC a little (not remotely enough to justify the cost and it never put me in full remission) was...
I have a small clear ziploc bag with 2 pouches, wafers, eakin seals, a tiny travel bottle of M9, a few napkins, and a disposal bag or two that I carry around in my manpurse (knapsack) or briefcase or...
@SL- I copy what you are saying, and indeed I fully agree that I wouldnt advocate the trauma of surgery recovery, as well as the risks, given her rather mild symptoms, especially if chronic pain,...