thanks, you guys! I guess my order was shipped out yesterday, from McKesson- so we'll see... I think once I set up an online account, it'll be easier- as it is, you really have no idea of order...
Hi people! I've been using Edgepark since surgery, almost 5 years ago- yeah, they suck, but they're easy. My insurance changed & I have to find a new supplier- my insurer was totally unhelpful, they...
I love cabbage!!!! I eat it all the time. It does cause more gas, but that's it. Just chew well... I'm not even that careful about chewing, to be honest. You name it, coleslaw, sauerkraut... I love...
hey Christine! Yeah, that was me who recently posted re. Edgepark & their sucky service! I had financial trouble too, they eventually refunded me over $500- but it took about 12 months, plus many...
Byram, that's another one I've heard of- Bruce Medical, huh? JMhis34- why did you switch from them? I live in MA too... I guess I will most likely stick with Edgepark- sort of "the devil you know..."...
me too!!! Exact SAME billing problem- I met my deductible, so my supplies are covered in full. Which we discovered at an order placed January 2017- now, I only order every 3-4 months, so by the next...
hey folks! Hope everyone is doing well- after nearly 4 years with my ileo, I've totally settled into a nice routine. I've been using Edgepark since surgery, & they've gotten pretty bad the past year...
yup, a little over 3 years for me too- yay!!! feeling good, no doubt....
over 3 years with an end ileo, & rarely use anti-diarrheal meds. I think I've taken Immodium 2x, due to actual "diarrhea". I sued to take it all the time with UC. My hemoglobin is always fine, I...
yup, if you can stomach a glass of wine- that helps- just 1! Then clear liquids. Walking, bending, not eating... I've had 2 actual blockages, not partials, & didn't go anywhere except to bed. By the...
no idea how to fix the noises, but if you hold your arm against the stomas, like rest your arm on your mid-section, that muffles it pretty well. Mine makes noises sometimes too, but it sounds just...
hey everyone! After 3+years with a perm ileo, I change the whole set-up (wafer, flange, bag) 1x a week, either day 6 or 7. I usually change just the bag 2x a week, after every 3-4 days the bottom...
You must mean an ileostomy, not colostomy??? Anyway, I empty @6x a day, over a 24 hour period. Once before bed, 1-2x in the AM before I leave for work, then a couple times as needed thruout the day....
I can't actually remember what I wished I had asked, but the reason I finally did have ostomy surgery is basically the same as you- too much scar tissue causing strictures, nothing else to be done....
I eat everything.. fruits, veggies, seeds, nuts, skins, popcorn... you name it. No reason at all to avoid a certain food- try small amounts, chew well, & you should be fine. Maybe the first week or...
I often have trouble sleeping too, but the ostomy plays no part. My output is most heavy thruout the night- it's weird, I wake up with a full bag, & then only empty 3-4x thruout the day. I have had a...
I don't know, I honestly can't see any relation to the 2- it's been 2 1/2 years since surgery for me, no j-pouch but perm ileo. My weight hasn't changed much- I lost during the hospital stay, of...
so I got an email this AM from Coloplast- they sent me a pdf of the Core 4 brochure, after I submitted a request thru the UK website. I'm starting this wknd!...
I can't do videos, I really need to see the info on paper! I requested a Core 4 brochure via the Coloplast UK website, but am not sure if they can send it to the USA. I also called the Coloplast USA...
funny you guys mention this- my lower back has been a bit sore lately too. I swim, a mile every other day, which helps. But I think I also need to start doing ab exercises- I was a big yoga fan prior...
I drink beer & wine, mainly- sometimes a Bloody Mary. Usually no more than 3 at a time- beer, that is! About 2 glasses of wine. All I notice is the gas- you wake up & the bag is like a balloon!...
I checked out the website- so it's like a giant metal stoma/j-pouch that sits inside your body forever... no thanks! I wonder if you can feel the hardness of it, internally, if you palpate the skin...
nice! It's getting there, then- just that last tiny bit has to fill in... I think it's because their is very little circulation in that area, why wounds take SO long to heal. Just keep having the doc...
welcome! Ask away, between all the posters, you're bound to get answers. Glad to hear your adjusting well!...
I had a recto-vaginal fistual too, sounds similar to you! Nice, huh??? My wound was small too, when I was using the pink floss stuff- maybe 5 mm's deep???? The WOCN would measure it every time I...
I wouldn't rush into more surgery- frankly, I think the WOCN knows a heckuva lot more about wound healing than the surgeons! At 6 months, I was still going to the Wound Center- the WOCN I worked with...
I forget when you had surgery, buy my rectum removal wound took a FULL 6-9 months to heal. I went to a WOCN a few times, the Wound Center, to have it looked at, measured, etc. They gave me a few...
so you see the leaks when you take the wafer off, like stuff oozed out onto your skin, but stayed under the wafer? I cut my own wafers, & alternate between the Eakin rings & Brava Sure-Strips,...
huh... I get it, the leaks are frustrating. I went for like a year with none,then suddenly, they happened here & there, for various reasons. It does sound like weight gain may be an issue- you could...
Yeah, if you're comparing a temp ileo or perm ileo, totally different outcome levels. And different locations of stoma. My perm ileo is to the right of my belly button, if I'm looking down my front....
not to argue, but 80mgs pred isn't necessarily a "mistaken" dose- my GI started me on that dose a couple times, I believe. Orally, at home. From the sounds of your current symptoms, you don't need...
I eat sushi all the time, all kinds! I don't even chew that well..... I find sushi to digest fine,the rice paper is thin, and vegetable based, so.... enjoy!...
I feel like CarenZ, the poster child for ileo living. I feel a million times better, healthier, happier post-op. Not to say I go around smiling all the time like some simpleton, but I do a heck of a...
So I changed everything out yesterday, & used strip paste instead of the Eakin- I just tore a piece off, flattened it out, then wrapped it all around my stoma, like a very tiny Eakin seal! Seems...
I agree, Tom! I usually have a pretty decent glass of red wine nightly, but haven't the past week- and yeah, the output is definitely WAY thicker without my wine! I may try the strip paste over the...
Hi folks! Does anyone here use strip paste instead of Eakin seals or Brava rings? Now, after 2 years of trouble free ostomy life, I've been having night-time leaks- not daily, but 2-3x over the past...
Good luck tomorrow!!!! I don't have nay tips, really about the prep, but just remember- this is your LAST PREP EVER!!! You can get thru it. My last one was REALLY bad too, but it'll go fast. Post...
my surgeon repaired the fistula, & he was a general surgeon, not even a colorectal one. I met w/3, 2 colorectal, one general. My GI uses my surgeon as his "personal" surgeon, & after meeting...
I know, staples are kind of freaky! It looked like something out of a horror movie, this line of shiny metal staples... because I would look at it in a mirror 50x a day! I never heard of anyone else...
hi there! I can answer your questions- yup, rectum removal was the toughest part of my entire surgery. I was in the hospital 5 days, & by the time I left, the ileo & colon removal wounds were...
well, I was on Remicade & Imuran for years, & got so ill with strep pneumonia & sepsis I nearly died. DIRECTLY linked to the biologic & immune suppressant use. I was in ICU for over a...
I'm so sorry to hear that... I just took a shower this AM, with everything off, & when I got out & stuck on a new wafer, I thought to myself how much happier I am with the end ileo, as...
what's going on with you these days anyway, NCOT? Just dealing with "mild Crohns"? Are you on meds or anything? What a f-ing drag... I do feel good these days, 22 months post-op now.... I think the...
UUmmm, yeah.... to answer the original question, no I never wear gloves. I don't even wash my hands every time I empty...if I happen to empty at 2:30am, I'm barely conscious- just do it & go back to...
hi everyone! So nice to hear from all my old friends- Pro, I've been thinking of you lately- glad all is well! Once again, the ileo has changed a bit- well, the output. It's still most active later...
I'd get that rectum out ASAP too. Sue is right, re. disease being active in that area. As far as fertility goes- I truly don't know the stats on it, but I don't recall an end ileo being much of a...
Good luck! I had my rectum removed & sewn shut at the same time as my ileo surgery- truthfully, that was the worst part, slowest to heal, etc. Most ppl. will say that, the rectum removal is NOT...
thanks, you guys! It's a relief to know others have similar schedules. And a relief also, to not deal with UC anymore!...
It does stink.. I love Hollister myself, find them to be the most comfortable, long-wearing, etc. And it's not every wafer that leaks, just some here & there... I double check them, & duct...
YES! I know EXACTLY what you're talking about- I use Hollister 2 piece also, & over the summer, I notied that same type of leak. After closer inspection- it's defective wafers! If you look at the...