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  1. Yesterday
  2. Hello! I'm wondering if there are any endurance athletes out there that work out in hot, humid weather and have a bag they believe in that does not leak.  If you could share your routine and supplies you believe in, I would greatly appreciate it.  I am small and don't really like the 12 inch bags.  I also like the lock and roll and hate bag clips.  Does any other athletes out there find it frustrating that the manufacturers don't have more mid sized bags options that are extended stay?  I also find it frustrating that the one piece bags leak more than the two piece.  Why is that? Thank you for your help!
  3. Last week
  4. Earlier
  5. My dear friend I owe you an apology. I’m sorry I am not able to be here on a regular basis and I may appear as a surfer. I have had many major issues since May when I had an emergency ostomy. One of them being homelessness. I have been bouncing around to friends and sometimes I’m in an area where there is no internet or cell in some areas. Please don’t let my actions reflect on to others or this group because it is an awesome group and there is always something new to learn here. I am fairly new to the group thing but right now I am restricted as to participation. I hope you get everything you need from this group. 

  6. Use of Stomapaste

    Barry, do what works for you. If you don't want to use the paste don't use it. It might leak without it so be prepared for that. Trial and error is key to getting used to any stoma.  Cheryl
  7. New Ileostomy, 4 year old Colostomy

    Thank you. I'm still getting output out of the colostomy. Not a lot but some everyday for the last few days. I spoke with my colorectal surgeon and he said it was going to do that but he didn't say how long it would be doing it. I'm sure how ever long it takes to clear out that part of the intestines is how long it will happen. I'm still wearing a bag on it until it stops all together. Thanks for the info!!
  8. HI Cheryl, Welcome to O'land! Sounds like you worked really hard on trying to get your body to heal. Unfortunately I don't have an answer as I haven't been in your shoes so to speak but the colostomy clearing out makes sense to me. Didn't your doctor give you any instructions on what to do about the wound? I've had my colostomy since 05 and had a dressing over the wound until it started to close up and heal. I do recall reading about a large tape like bandage that is used for covering wounds called tagaderm. Here is a link if you are interested in checking them out: https://www.rehabmart.com/category/transparent_dressings.htm Hope it helps.
  9. Nursing School

    Congratulations and thank you for keeping us informed on her wonderful progress!
  10. Thank you for giving many of us the opportunity to grow with this wonderful, resourceful forum !
  11. Hi all. I'm new to Ostomyland but not new to the ostomy world. I was diagnosed with Stage IV metastatic rectal cancer spread to my liver, lungs and now my vagina. I had a colostomy placed in April 2014 and have not had any problems with the colostomy for years. I had abdominoperineal resection in November 2014. The surgeon removed my sigmoid colon, my rectum, and anus. This procedure saved my life. Although I have cursed the colostomy many, many times over the years I would gladly go back to the colostomy after having an ileostomy placed late last month. I had several leaks in my remaining colon and was leaking feces into my abdominal cavity and through a vaginal fistula. My colorectal surgeon is my hero because although he was skeptical that I could survive another surgery, he did perform the ileostomy surgery and again saved my life. This was done on January 30, 2018.  So the ileostomy is brand new and I am going through one hell of a learning curve with the ileostomy and leaking. I follow a low residue diet, and have tried several different products to try and prevent leaking. My skin is absolutely raw from replacing barriers. I cannot seem to find the magic solution to prevent leaking. My ileostomy wound is shaped like an eye. The actual ileostomy is small maybe the size of a 50 cent piece or smaller. The wound however is much larger with visible sutures on both ends. It hasn't healed and as many leaks as I have had I can't imagine it ever healing unless I get this leaking under control. I was a wizard with my colostomy, I had figured out a system and a one piece/no ring system was working beautifully. Tonight i tried yet another system for the ileostomy. Hopefully it works this time. I need my skin around the ileostomy to heal and the best way to do that is to stop having to peel off barriers several times a day to replace them with a new dry aparatus. Tonight, i took off yet another barrier because it had leaked and cleaned up the area and attempted to remove as much paste and old adhesive as possible. But like I said, my skin is so raw it burns to put any solution on it. But I grit my teeth and get as much off as possible. Then I put a nice layer of ostomy powder on the tender skin and in the ostomy wound to dry it as much as possible. I then took a hair dryer on low and at a safe distance to help dry the area. Thank goodness the ostomy didnt produce during this time so I was able to get it clean and dry. The next step is what I'm concerned about. I actually took stoma paste and put it into the wound around the ileostomy opening. I'm not certain that this is the smartest move in the world as I'm not sure how that is going to heal with ostomy paste in there. But at this point, I'm desperate. Then I took a wax ring and molded it to the shape of the entire wound and heated it and adhered that to my wound. Then I took more paste and plugged any holes visible. I left a hair dryer on it for approximately 15 minutes so that the paste and wax ring were only tacky to the touch. I then heated up the barrier adhesive backing and placed it over the ileostomy hole. I kept my hand over the barrier (with bag already attached so I didn't have to press down on the area and start the leaking process). Once i felt that the barrier adhesive was well warmed and attached properly i removed the backing for the outer adhesive film and attached that to my skin and again held my hand firmly on the whole system to insure a nice seal. I cannot tell at this point whether this whole process is going to be the magic cure for leaking yet. I can only hope. So my main concern is, am I causing any damage by putting the stoma paste into the wound around the ileostomy? Will it ever heal if this actually works and I continue to fill the area around the ileostomy with paste and then cover it with a wax ring? Also, since I have had the ileostomy my colostomy has shrunk to probably a third of the size that it was. Which I figured is what would happen because it's not being used any longer. But, I had quite a lot of output out of the colostomy today. It is formed stool whereas the ileostomy is mostly liquid. I just started taking lomotil to try and get ths small intestines to either slow down the output or to firm up the output. Do you think that the colostomy is just clearing out what was left in that part of the intestines? Any feedback is appreciated. Thank you in advance for your help. Cheryl
  12. Today - Jan 21st - is the 20th anniversary since I uploaded that first page of ostomy material to my homepage, launching the online ostomy support IRC chat room. That was effectively the start of Project: Ostomyland.    It's been a rollercoaster ride with crazy highs and morale destroying lows with lots of dizzying corkscrews in between lol. It's an honour to have made so many friends as a result of the project. As always I can't thank all the fabulous happy helpers and admins enough for all their help or advice over the last few years that they've been part of Team O'land, either her on the forums or over on our Facebook Group.    You know, I thought I'd be feeling more celebratory about it all but I cannot help but reflect over the lost friends and family during those two decades; About how life can throw you so many curve balls driving you down a path you never, ever saw coming. So many thousands of people have been through our 'doors', some purely wanting to share on the benefit of their years of personal experience, but most are facing the scariest time of their lives.    It's been a humbling experience to have shared those journeys with so many people around the world, and in a lot of cases to have seen their confidence grow to the point that they too eventually become the next generation of experience sharers.     So anyways I just want to thank all of you for your support over the years, both of myself and Ostomyland. People often congratulate me about the length of time the project has kept going but the fact is I just provide the foundations with the website accounts and forums software. You provided the bricks that make the house! This day would never have arrived without YOU! So thank you everyone!
  13. Nursing School

    Can't believe I missed this blog entry. My goodness how Charlene has come along. She's done so well and is doing is all proud!  Keep up the great work Charlene! 
  14. Well it's Christmas 2017 and once again a very Merry Christmas and Happy New Year to all the ostomates everywhere!
  15. Use of Stomapaste

    Hi Barry, I'm not experienced in what you are going through but I hope things are well for you? In the videos your watching have you tried doing things their way and most importantly did they work better for your? Have you told the nurses about your experience? Did they explain why you should do it with the paste?
  16. How do I get that ^%&$#^ flange to stick.

    The company that makes my products has a wax ring, like a gasket you us under a toilet.  It is molded to ft the shape of the hole in the gasket and sticks very well.  Only problem is it sticks to the hairs when you take it off, lie a bikini wax I guess.  Someimes I use an Xacto knife to cut the hairs as I remove the gasket.  It is more work but the gasket will stay for five days.   I hope that helps.
  17. So glad that I took the time to analyze and respond (on November 1st) to Narkor's desperate plea in a timely manner so that he would have some help in making his decision by November 22nd - His last visit here was November 1st so he likely hasn't even read it.  Unfortunately, not the first such happening... Maybe the time has come for me to re-evaluate whether such is worth my efforts, general approval rating percentage (Likes to Posts ratio) notwithstanding ...
  18. Use of Stomapaste

    Hi all, Just getting started with an Ileal Conduit that I had surgically inserted about a month ago. The nurses that I've been working with use stomapaste as part of the procedure for attaching the basic appliance to my body. However, the instructional videos I've been looking at (through You Tube) do not use this paste. Is stomapaste in fact part of the procedure or are the nurses I've been working with making me go through an unnecessary - and somewhat unpleasant- step. Thanks very much. Barry    
  19. "20% to 30% chance they did not get all the micro cancer cells which are undetectable in any test. In order to prevent the 20-30% chance there are undetectable micro cancer cells from moving to my lymph nodes then liver and lungs, is to perform the surgery. This will reduce the 20-30% to 3%." Okay, Please consider this and discuss with appropriate medical personnel if you are so inclined. Removal of colon 5 cm from both sides of where polyp was removed reduces cancer risk from 20 to 30 percent to but 3 percent.  Presumably, the 5 cm was chosen because after that each cm more is statistically insignificant for its effects when compared to the adverse other effects of that removal.  Thus, can a standard normal curve be fitted to the 10 cm interval, polyp removal site on centre?  If so, you may find the statistical risk of leaving the absolute minimum on the anus side to keep a functioning sphincter and anus acceptable.  Now, this will, no doubt, be a very delicate operation requiring a highly skilled colorectal surgeon but, if it were me, I'd be asking the questions.  Note as well that, again statistically, the operation to remove sphincter and anus carries with it a 10 percent chance of rendering you impotent. Tough call.  You need to pull in all available resources to make your most informed decision.  As to the qualitative factors, well, I had my total colectomy at about your age and I've learned not only to live with it but to flourish - Life is good.  Good Luck.
  20. Hi everyone, I just joined. Currently my status is I have had a polyp removed and it is undifferentiated, and tumor budding is present. It is stage 1 adenoma carcinoma, a common cancer. The polyp was intact and it was removed. The colorectal surgeon at our general hospital is recommending removal of 10cm of my rectum. 5cm above and 5cm below where the polyp was found.  Unfortunately there is only 4-5cm too close to my anus so it means if I make the decision it is an ostomy bag for life. I am very concerned and troubled by the decision I have to make. The way it has been explained to me is that my macro cancer cells CT and MRI tests are all negative. The surgery is recommended as the polyp had two out of four markers that make it a high risk aggressive cancer I am dealing with. There is a 20% to 30% chance they did not get all the micro cancer cells which are undetectable in any test. In order to prevent the 20-30% chance there are undetectable micro cancer cells from moving to my lymph nodes then liver and lungs, is to perform the surgery. This will reduce the 20-30% to 3%. I am struggling with a decision that is based on statistics more than facts. The fact is I do not have cancer. I might get cancer from micro cells if they were not removed fully. Has anyone faced this type of decision before and how did they come to terms it? I am a 46 year old male, with 0 health issues and have not had a cold flu or any sickness since 2015. I have till Nov 22, 2017 to decide, and I am leaning towards not doing it, but still unsure. I am currently researching life with an ostomy bag but really scared of what I am reading. Not sure what other info you may need but let me know. Thank you.  
  21. Sore

    I have what is a really red spot about the size of a pencil eraser. I seen the ostomy nurse and he said it is nothing to worry about but is getting worse. I use coloplast and did a sample of lite convex down from currently using deep convex. It didn't seen to make much difference but hard to tell seeing as they only give you 2 samples. I also use the powder product to dry it before adding sking prep but tried not using skin prep after the powder but no change. Also I currently use the strip past which is the long piece that you form as I tried the ring and stuck so bad it was worse. Who else could I see about this.
  22. I was wondering if maybe you were in the same kind of situation I am. message me back, if you would like I would appreciate it.

  23. I feel unwanted

    Hi,  I am new to a colostomy --just 5 weeks and have issues with my body, noise, will people know?  But my twin daughters [11] let me know that it is important what is on the inside, not on the outside and that helps A LOT!  Also one of my post-surgical nurses filled me in on the respect she had for ostomies because she would have lost her mother over 20 years ago if her mother hadn't had the surgery.  I have remind myself that my colostomy saved my life, and that's priceless.  
  24. The TIES System

    ostomycure.com
  25. The belt is a great suggestion.  I have used the belt on my daughter who is extremely heavy, plus I use Eakin Cohesive Ostomy Barrier Seal by Convatec.  I use it all the way around the stoma (you can stretch it into any shape you like) and it gets warmed just by the warmth of your hands.  It sticks to the flange like nobody's business and the pouch seems to stay put (I use the 2 part Hollister floating flange and pouch system).  I am also a newbie and am still trying any suggestion anyone out there has for just about any problem. Mother Roz
  26. Thanks for the tip.  No, I didn't use the hair dryer since I wasn't sure whether or not  you meant on the flange or the patient.  I have tried calamine lotion to dry my daughter's skin, and that seems to work.  Her skin is looking better and the flange seems to stick, so I guess I just use the dryer for my hair, but thanks for your interest and suggestion.  It means a lot to me that people care.
  27. The TIES System

    How about posting a link to the titanium portal from Ostomy Cure, Norway website?  Thanks!
  28. Has anyone used or seen the new titanium portal from Ostomy Cure, Norway?  It is a pouch-less system for persons with an ileostomy.  
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