Christine...I remember talking with you. I think I recommended my surgeon at Jefferson to you. I'm so sorry that you're still dealing with this issue!! I hope you got some good news at your surgeon...
Oops..I have to change my profile. I'm 55 now. 😬...
Hello everyone! I haven't posted in a long time, but I do check in every so often. Yesterday was my 3 year stomaversary...the best 3 years! Life has really been incredible. Going where I want, when I...
I've flown a lot, domestic and international....no issues. Occasionally, when I've gone through the full body scanner, they've had me touch the area of my bag and then they swab my hand to check for...
I too never miss my ostomy support group meeting, even though I'm very happy with my ostomy. I feel that I give a lot of support and encouragement to those who aren't as happy, or who are just...
I eat a lot of sushi. I chew the nori really well, but if I find that it doesn't break down, I don't swallow it. I'm sure it would be fine if I did, but I don't take the chance. I discreetly spit it...
I'm copying and pasting a recent post of mine... I found the best deodorizer that really works for me. It's made by Safe and Simple. It's their pouch deodorizer without lubricant. It's an odorless...
I wish I would have had my surgery much sooner. I suffered for a long time, and tried all the meds I could. I had no idea how great I would feel and how wonderful my life would be, disease free....
I found the best deodorizer that really works for me. It's made by Safe and Simple. It's their pouch deodorizer without lubricant. It's an odorless blue liquid. I have ZERO odor. Truly amazing. I...
Carry a ziplock back when you're going somewhere like that. It's much easier to empty into one of those in a port-a-potty, airplane bathroom etc. I can't think of anything I've been hesitant to try...
I think your golf game will improve. You'll be playing without pain, without the anxiety of worrying if you'll make it to a bathroom if needed, and with a lot more energy once you're rid of that...
I eat everything...corn, nuts, mushrooms, raw veggies, popcorn, fruit etc. I do peel my apples if I'm eating them whole, but if they're cut up, I don't worry about it. If I'm chewing something like...
When you go to the bathroom your 6-7 times a day, do you have pain and urgency? Is the disease the reason you can't work and the reason you don't have a social life? If so, I think you've answered...
It's not just the medications you have to fear. The risk for colon cancer increases in crohns/UC patients after time. I had UC for almost 20 years and my surgeon told me that I had a significant...
Ps. I've never heard of anyone having a flare with an ileostomy if you had ulcerative colitis. Once your colon is gone, so is the UC. Maybe you're thinking of jpouch people who have flare ups of...
I am female.... No nerve damage. No complications other than a UTI in the hospital....but nothing significant. The pain was not agony...it was just pain that was controlled. The butt pain lingered...
I have a permanent ileostomy. I had a total proctocolectomy. I had ulcerative colitis. I do have one regret...THAT I DIDN'T DO IT SOONER!! Life is wonderful! ❤️ I'd be happy to answer any of your...
Enjoygolf It was all done in one surgery for me. The butt wound took the longest to heal, but I had no issues...everything healed nicely. It was hard to sit comfortably for a while, but everything...
Here I am!! I read most of the posts, but don't feel like I have much to add lately. And Keith, I'm in my EARLY fifties!!! Lol. Although, I just turned 54. So I'm getting there. Enjoygolf, I didn't...
Silent Lucidty, for some reason, I can only see your comment when I'm not signed on. Do you have me blocked or something? Can we even do that? If I ever said something that caused you to block me, I...
Sunny, no need to apologize for asking questions! That's why we're all here! To get, and give help! I do the same thing using a baby wipe, or a paper towel. If it doesn't easily wipe away, I'll use...
Cheers to you as well, Ncot. I hope you figure out what's going on with you soon too. xo...
I've been having problems with my Eakins rings and I may have figured it out. I recently got a new, very powerful blow dryer. I use the dryer during each change to dry my skin, and then dry the...
Thank you ladies for your responses! Eva Lou, I took your suggestion and called Convatec, who makes the Eakins. The nurse I spoke with asked a ton of questions, and is sending out some different...
Hi everyone. I'm hoping you can help me with an issue I'm having. I've had a great system since I've had my ileostomy. I wear the Mio 2-piece bag with an Eakins ring. I've never had a problem and...
High five to Eva Lou for telling it like it is!! ✋🏼👏🏼👏🏼👏🏼...
My surgeon always had me take off my bag so he could check out my stoma and surrounding area. I always brought in a change with me and put a new bag on after. Once or twice he asked if the resident...
I'm just outside of Philadelphia. 🇺🇸...
I only use the Mio 2-piece. I've never had a leak and I find it to be the most comfortable, for me, of all that I've tried. It's impossible for the outer ring to pop off, if you click the locking...
Obviously a troll....just ignore....
I too, don't change my bag before I go to bed, but I do empty. And sometimes I get up to pee, sometimes I don't. If I do, I usually empty. I've never had a leak or an accident. And I sleep naked...
I didn't read any of the other replies so forgive me if I'm repeating anything already said: I wish I could turn back the clock and do my surgery earlier. I was so afraid of it, and the thought of...
I suggest you call you gynecologist and describe your issue....they might be able to prescribe a barrier cream. Good luck and have a great trip!...
Don't you think he's curious as to what kind of surgery you've had? Tell him! If he isn't compassionate and accepting of what you're going through, perhaps he isn't the guy for you! NEXT! Lol....
I had my surgery at Jeff. Love my surgeon, Dr. Benjamin Phillips. My surgery went great and I think the care I received at the hospital was wonderful. A lot of people here say that when their surgery...
Sunny, complain away! That's the only way you'll get suggestions, recommendations and support! I meant that I won't suggest it again because I'll assume you've either tried it and didn't like it, or...
Pouch deodorizer. Blue liquid. 👍🏼👍🏼 The odor eliminator must be new...I've never tried it. I'm sure they'll send a sample of both. 😀...
They should give me a commission! I've turned my whole support group onto it. My husband thinks it's one of the greatest inventions! Remember....ask for the one without the lubricant. I give a couple...
http://www.sns-medical.com/newone_005.htm...
Sunny, I believe I've told you twice before what I use. Safe and Simples pouch deodorizer (the one without the lubricant...blue liquid) has been a miracle product for me. I believe that both times...
I stopped responding to medications. Nothing was working. I tried Remicaid, Humira, and then Simponi. Zero results. Even prednisone wasn't helping. I was going to the bathroom over 20 times a day and...
Sunny, have you tried the deodorizer I've told you about before? I swear by it. I have ZERO odor. I could burp my bag in a full movie theater if I needed to and no one would know it. I squirt a few...
Congrats!!! Isn't life, disease free, great!!! Enjoy!!...
Stools with an end ileo are never formed. They are always liquid....sometimes thicker, sometimes thinner. This depends on what you eat/drink and your level of hydration....
I'm so happy for you. Best wishes for an easy and speedy recovery!...
Isn't life great!! Congrats and enjoy!...
Wow cpc56....I think you should see another surgeon. One who makes you feel more confident. I LOVE (really!!) my permanent ileostomy. I've never had a leak, infection, skin damage, a blockage, ulcers...
UCwhat....I'm sorry to hear about your leak. Haven't had one yet, so can't offer any advice, just sympathy! I'm sure I'm due for one soon! Can you tell me more about what you're doing to strengthen...
I love my surgeon, he listened to me, and still does! I email him every now and then and we keep in touch. I have no more pain, no more UC issues, no more medications...except for blood pressure and...
You make 10-15 trips to the bathroom a day? And you don't think you're in a flare? You sound like me...I was never truly out of a flare. Wait until you see how much free time you have without...