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  1. 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.  
  2.   I have just been checking out the issue of ostomy shower guards in the UK. There is a useful article on the US Stomashield site. However the problem with US products is that they can often have hefty import duties attached. The US blue crown apron is one such product. Now - don't tell me to wrap a plastic sheet around it or a shower cap over it.... are there any specialised products like Blue Crown on the UK sites? Can anyone advise?   
  3. Charlene is off to college!

    It's hard to believe, but in three weeks, Charlene is leaving for college. She's feeling very well. She has Remicade treatments once every eight weeks, which, fingers crossed, seems to be keeping her Crohn's disease at bay. She's going to study nursing and she'll have the time of her life at the University of Vermont, in Burlington, VT. I'll miss her terribly but what a long, long way she has come since her initial diagnosis in 2008, when she was just 11 years old and almost finished with 5th grade. Charlene has achieved more than most kids her age, despite having an ostomy, and active/aggressive Crohn's disease. She just graduated from Kingston High School, in Kingston, NY, 15th in her class of 420 kids! She has played the trumpet for 10 years and this year was selected to perform in the NYSSMA band in Rochester in December. She had a perfect score on her All-state level solo in the spring last year! She was a drum major in the marching band for two years...which was both physically demanding and required leadership skills which she developed along the way. To say that I'm proud of her would be an understatement. I'm THRILLED for her. Despite everything...despite her three surgeries, and endless numbers of days in the hospital, and visitng doctors and wound care nurses, etc. she has absolutely risen above it all. So off she goes! Thank you for all of your support, everyone!
  4. Hi Guys/Gals,     Newbie here, just found this forum while I was looking for an ostomy-specific mattress.  I haven't had any luck finding what I'm looking for, but figured before I make one I'd ask if anyone here knows if one is already available.  What I'm looking for is a 4" to 6" memory foam mattress topper that has an area cut out for my ostomy bag to sit in if I sleep on my stomach.  I always sleep on my left side and sometimes on my back, but I really want to sleep on my stomach.  If the mattress had a depression or cut-out where my bag could sit, below the level of my body, it wouldn't be pressurized by my body weight.  I thought for sure someone already made something like this...........but I've been searching the web for awhile and keep coming up empty.  Anybody know if something like this is already being made?   thanks, bob
  5. hello I usually blog at but thought I'd share some of my stories here with you. hope you will enjoy reading. After 6 weeks of hospitalization and a little vacation, I was ready to go back to work. My work is mainly a matter of driving out to visit private clients. At first, I was quite nervous about whether clients would discover my ostomy, due to things like the farting, the bag springing a leak, or whatever else might happen. That day I had folded the bag in half, as you can see in the first picture, in order for the ostomy bag to take up less space, and I had also put an elastic bandage around my abdomen to soften the sound of any farts that might occur. This combination turned out to be less than great, because I just ended up sitting in my car with feces all over my shirt and pants. The first meeting went very well. There was no sound and nothing really to worry about, although I was able to feel that stool was entering the bag. Still, it wasn’t enough for me to have to run out and get it emptied immediately. So, after the first meeting, I drove on to the next client. Once again, stool entered the bag, but I hadn’t considered the fact that when the bag was folded up like in the first image, there wasn’t room for as much feces in it. The fact that the bag was folded and that I had put a bandage on, meant that the stool was being squeezed out under the ostomy bag, which meant that I was sitting in the car getting feces all over my shirt and pants. Of course, I had extra bags, but I had neither clean pants nor a clean shirt with me. Besides that, I had about a 20-minute drive home. In the end, I had to call the client and tell it like it was, that I had an ostomy and had had an accident in the car, and I therefore needed to reschedule the meeting. Of course, the client was very understanding, so I rushed home to take a bath. Sitting there in my car with feces all over everything, only a few weeks after my surgery, a few thoughts went through my head. One of them was that having an ostomy would be a huge burden, and that I pretty much wouldn’t be able to go anywhere without bringing a change of clothes. Fortunately, having an ostomy isn’t as bad as I feared. I’ll be back in a later post about the things I’ve done to prevent accidents. until my next blog you can read more on Best regards Tonny
  6. i have a colostomy and am overweight.  i have been considering using xenical (orlistat), which i have read can cause diarrhea.  i'm wondering what the results would be in a person with a colostomy.  has anyone used it or know someone who has?
  7. Here in Canada, in order to be accorded income tax relief for the Disability Tax Credit ("DTC"), the most expedient way to qualify is to convince a doctor that tending to our ostomies takes at least three times the time a non-ostomate takes to carry out the same elimination activity.   I have an ileostomy and I think that, more than ten years later, I manage it pretty well.  Nonetheless, what with changes, emptyings, the occasional emergency clean ups, and preparing the perimeter seals that I cut out, I added it all up I'm spending between 50 and 60 minutes a day on average taking care of my "Little Beastie."   I figure that the average (not Crohn's or Colitis ravaged but healthy) person probably spends at most ten minutes on their daily constitutional so I'm more than three times that and compliant for receiving the DTC.    But, I wonder, is my time expenditure in line with our norm?  Just asking...
  8. Ostomy song

    Greetings all, I am new to the blogosphere and come here as the parent and husband of a family with Gardner's syndrome. My son Micah, went through a j-pouch surgery on June 11th of this year and as happens, got an infection that left him in the hospital off and on for most of the summer. He comes home today after his latest stay and all total 73 days in the hospital since the surgery. During this time his faith and attitude have never wavered and has been a wonderful example for everyone. To that end, he has written a song that I hope you will find as encouraging and funny as we have. The hospital staff enjoyed it enough to have a professional musician do the background instrumentals to the song. The link is on YouTube and I hope you pass it on to others who have had or are having to deal with an ostomy. Enjoy!
  9. Hi All! I realized I might actually be moving next year (we're military). Does anyone know how airline travel is with TSA? Have they stopped anyone because of the bag? I've heard of elderly folks in wheel chairs being stopped and things like catheters being looked at. It's my worst nightmare to be stopped and forced to pull out the bag in front others. I saw on YouTube there is a girl there who is putting a video journal of her journey with her ostomy (it's pretty interesting. She even video chronicals changing her bag. Check it out: ) and she mentioned flying to Seattle and that TSA is SUPPOSED to be educated about ostomies and things, but that they weren't in her case (she told the story on her most recent ostomy video). Has anyone had any experience with flying?
  10. Just a reminder for everyone about the main parts of the Ostomyland network: Main Site (Information): Ostomy and community news, colostomy lifestyle guide, manufacturers section and portal to all our other services. This includes all the content that started it all off 14 years ago! Main Community Site: Nearly 4000 members, 81500 posts, featuring dedicated ostomy forums, blogs, chat room - but you know about this already! Ostomyland Ostomy Wiki: http://www.ostomylan...wikkia/HomePage The first, and we think still the only, ostomy-dedicated wiki on the net. A constant work in progress, with over 250 pages of content so far. A major re-write of the wiki is in the works so additional editing is currently disabled, but everyone can still read the content. Ostomyland Facebook Support Group: Ostomyland Twitter Feed: Ostomyland Community Twitter Feed: The Fuzzbutt Adventures - Facebook: http://www.facebook....omylandfuzzbutt A bit of silliness where we follow the regular adventures of Ostomyland's furry mascot and pal, Fuzzbutt. Features pictures and shared silliness. We look forward to welcoming you on one of our sites in the future and hope you find any support or answers you need there, as well as make many new friends. If you need help accessing or understanding how any of the site's work then please don't hesitate to get in touch and we'll do our best to help you out.
  11. Hi, Group, I'm new to all this; surgery was March 3. I'm curious to know if anyone has any stories/advice concerning dogs and your own bag. Occasionally a rude or untrained dog used to sniff my bum; are these same dogs going to be drawn to my colostomy bag now? I have this (horror) vision of some stray jumping up on my abdomen when I'm out walking ... the dog's nails haven't been clipped, of course, and my bag gets punctured ... well, you get the picture. Has this happened to any of you? Cheerio, Susan (aka Zenobia)
  12. Hey guys! Just wanted to let y'all know that I've started an online support group on Facebook. You can check it out, post questions, stories, advice, or tips! Feel free to share whatever you'd like (but please keep it appropriate ). The website is: Hope to see you there!
  13. non-sticking bag

    My step-daughter has had an ostomy for about a year and she is still having trouble keeping her bag on. She cleanse around her stoma with just a wash rag. Her nurse told her to do this. I will not get a rag near my stoma. Whats your thoughts on this matter?
  14. My Rights

    Just wondering what are my rights in having an Ileostomy? I work and lead a normal life, sometimes it can act up. Think Im covered under the Disability Rights Act in work, but what about normal every day life? as a doctor pointed out to me I am technically incontinent. I pay full rent, work part time due to having a 7yr old and 2 teenage daughters. I cant afford a shower, but really need one for them times when I leak alot when my Stoma (steve) is acting up. what are my rights, Ive never asked the question and Ive had an Ileostomy for 17 yrs.?????
  15. Hello All.....One week from today I will be flying to the Canaries-first time since my ileostomy surgery last October.... I have no problem with my supplies etc...realise that it is best to keep them with me in hand luggage-have Gp's letter and travel certificate-so all practical things are under control. My problem is what to eat the day before and during the flight-won't be having an airline meal,prefer to take my own. This last week I have had a few problems with pancaking alternating with liquid output....trying hard to balance my diet so that output is neither liquid or firm...when it is of a firmer consistency it has difficulty going into the pouch and in a very short time by bag starts to leak....any advice pre=flight will be very welcome... Daphne
  16. I've just received a very bizarre leaflet from Clinimed this morning which was for their Welland Hyperseal product. What was so bizarre about it? Well, 50% of the advertisement space was given over to the humble garden leek. The whole idea being a pun on the word "leak" and the fact the product prevents leakage. But, not only did it have a front page given over to a Leek, but inside was a packet of garden seeds to grow your own leeks, and on the reverse was a recipe for a very hearty leek and potato soup. "Let these be the only leaks in your household".... (It is a great product too, I've used it repeatedly myself in recent months). Funny, yet totally bizarre. It's a brave move by Clinimed. Ostomy product advertising has been very stale, generic and cliche'd for years. This is a brave step to challenge that culture of advertisement stereotypes. However, by making light of leakage, they could risk upsetting the ostomates for whom leakage is a huge problem - one big enough to affect their morale, cause depression and devastate their lives. What do you think of this leaflet? Brave step away from stale advertising? Or could it be offensive to those with leakage problems? Or something else? I've love to know what you think, and there's a quickie poll associated with this topic too. Original post from Ostomyland's news/information main website:
  17. Dilation Pain

    My Father has had a colostomy for 2.5 years. His stoma opening is 3mm and has to dilate with a 12mm tool every 3 days. He is in so much pain when dilating that he takes a massive amount of Tylenol. He has tried a numbing cream - and that doesn't penetrate enough for it to do anything, and has all in all tried many differnt methods. Does anyone have any advice on how to reduce the pain? I am open to suggestions. Surgery is not an option - as he is at high risk for not surviving another surgery. Thank you!
  18. Hello Ostomyland, hello ostomy!

    Wow, so hear I am after four and a half weeks in hospital and I've returned home with my innards on the outside! Not quite what I was expecting to walk out with but I have to say I feel better than ever. Never thought I'd say that to anyone, in fact just before the op a nurse told me it was the best decision I'd make. I thought she was just comforting me. 3 days after my op, I realised she was telling the truth. So I'm new to this site, new to the world of ostomies and quite frankly everything is a bit topsy turvey, but not in a bad way, just a getting the hang of it way. I assume it gets easier?! Doesn't help that I'm clumsy-wow that has lead to some funny episodes! One thing I'm no stranger to though is crohn's disease. It's a part of me and boy don't we know it! My crohn's is like Houdini the rabbit, constantly burrowing away, what I mean is in medical lingo I have the lovely fistulating type of crohn's. Bits that should be inside try and find alternate routes out, apparently the plumbing system god gave me wasn't suitable! Anyhow just because my crohn's has tried to cart me off to heaven twice a lil quicker than I'd hoped, does not mean I'm angry at it, nor am I an angry person because of it- I could manage to be angry on my own if I so wanted, thank you very much! But I'm not, I'm one of those smilers, ya know, big teeth, big smile, enjoys early morning, bit sickly sweet, the person you don't want to be sat with on the bus at seven on a monday morning! I was diagnosed with crohn's at 13 and managed, no easily, to reach uni, a few weeks ago I missed my finals as was whisked in for emergency surgery- dnt panic though, luckily uni believe me that wearing my bowel on the outside of my body wasn't a new fashion craze and after sending me a box full of cupcakes As big as my head, are letting me sit in august! So yeah that was a bit about me and my lil stoma, Take care and love today and yourself xxx
  19. I recieved a letter in the post via my GP from the Community Healthcare Urology and Corectal services, telling me that its a good idea to have regular stoma care appointments and would I like to have an appointment with them. This is completely seperate from the care I get from my consultant, own stoma nurse and GP. I've got an appointment for the 11 May and to take spare ostomy supplies, so I'm guessing they're actually going to look at my stoma etc. I'm going to ask if they can give my consultant a prod to see if he'll get me a date sorted for my hernia surgery too. Has anyone else ever being invited to this sort of clinic/appointment??
  20. Hi, I don' have an ostomy, but as a person suffering from fierce fecal smelling wind that I never feel coming out (there's a few of us at the IBS Forums), I'd like to know what the resident experts would recommend for reducing smell and volume of gas. I've read the diet page, but as I've seen on the IBS Forums, the resident experts seem to have some great ideas that don't make it to a general information page, and I was wondering if the resident experts here could recommend us Leaky Gas sufferers or Fecal Body Odor sufferers some good advice on food and supplements. Any help greatly appreciated.
  21. My first post - I had Crohn's Disease since college. Had one resection of the terminal ileum and ileo-cecal valve back in 1985, and finally a proctocolectomy with ileostomy in 1995. Knock on wood, been doing great since then. I've travelled all around the world with an ostomy and have not encountered any problems. I consider myself lucky. I've settled here in Seoul South Korea since 2004. I have not needed medical attention regarding my ostomy until now. It's not urgent, but I would like to consult with an Ostomy nurse. I'm having a heck of a time finding one here in Seoul, English speaking or not. Does anyone have any recommendations or advice to find one? After consulting with my doctor and nurses, it seems that ostomies must be pretty rare here in Korea.
  22. Today I will learn how to Blog

    Well my friends, my first effort at blogging has started off on a silly note. I have managed to start 2 blogs at the same time. I wonder if Jason can kindky remove my duplication. Button pressing used to be my thing, but unfortunately as time has passed I manage to overdo it in an attemt to get it right. This time I've cocked it right up. Never mind, this is the real one and the empty one is the one that has to be binned. Hope you see this request Jason. I've been a tadge (is that a word) anxious since I learned that I was to have a second stoma. It seems its the only way forward, firstly to stop the rot in my body and secondly to try and get back a bit of independence. At the moment I'm tied to the bathroom and can't eat any solids, so the hospital have put me on Ensure drinks which are totally disgusting. I have tried to cheat a bit, and every now and again I see the family eating and think oooh I could just try a bit of that. Lets be honest its not a good move and I always end up doubled up and having continuos big "D" for the next few hours, so why bother? I'm losing a bit of weight but not too much I think. My kids have a laugh when my trousers fall down due to a bit of weight loss that I haven't noticed! I have very little feeling on my abdomen skin, so I don't know they have fallen dowwn until they trip me up around my ankles. My surgery is due on the 9th September 2010 to give me my colostomy, its called a Hartmann's procedure, which is to remove the diseased parts of my colon and allow my bowels to work without having to monitor every pain and noise. I already have an ileal conduit urostomy which was given to me by a surgeon who was kind enough to "take me on" after my local hospital said that they had no expertise in dealing with MRSA infected cancerous bladders. I just think they got a bit fed up with me after 2 years of prodding and poking and making things worse. So instead of being treated by my local hospital a couple of miles down the road, I have to go to Manchester, 30 miles away down the motorway for every bit of medical attention. My file there seems to be 6 inches thick. But at least I know my way around there now after the last 3 years in an MRSA free environment! I even know all my Doctors and nurses by first name - it helps! Just a quick question: how many colostomy and urostomy people are there out there? I've met (via internet) a couple at least. John W - Mike NZ and some from another website. Really though is there an underground group of colo/uro double ostomates who keep themselves to themselves? - Does anyone know the statistics? Am I going to be one of a minority group or just an oddball??? - Its been quite difficult to find any urostomates over the last 3 years, and now to try and find double ostomates is going to be even harder me thinks! - I did set up a Facebook Group for urostomates, called UROSTOMY AWARENESS, which has attracted quite a few worldwide members and now good friends. I'm chuffed to bits about that, but I would love to know if anyone has any statistics or COLO/URO doubles at all - just interested thats all. Well thats it for now - I hope this blog is as it should be and I've not made too many mistakes - I'll soon find out when I get a telling off from Jason or Kathy in the next day or so! Only joking - Jokes? What are they? Love and Hugs to you all - Phil xx
  23. I used to have a fab Stoma nurse in Bradford called Kim. But having taken the plunge and moved 180 mile to Wales, I am struggling to find someone to sort out my little ostomy niggles. I have a permanent colostomy. Had it when I was 12. I'm now 37. I've noticed some white areas aournd the edges of my stoma on the granulomas, and am worried this could mean something isn't right?? Anyone else had anything similar? Thanks for reading, Emms xx
  24. I have metastatic colon cancer with tumors in my liver. I have a tumor that is compressing bile ducts and restricting flow of bile. My doctor is suggesting a procedure to install a drain from my bile ducts to bowel but indicates a 40% chance of having to install a permanet ostomy for bile drainage. Does anyone have any experience with this. Can you tell me any problems that you have experienced. Thanks for any help.
  25. First Tysabri Infusion

    Today Charlene and I traveled to Hartford, CT to the Children's Medical Center there for her first Tysabri infusion. We left really early in the morning, at about 5 a.m., and arrived a little early for our 8 a.m. appointment. The infusion went beautifully and so far no adverse affects whatsoever. If there's one thing I've learned from this whole experience it is, as a parent especially, we must trust our instincts and push, push, push for what we know in our hearts is right for our children...and never, ever hesitate to get a second or third opinion. All doctors are different! Meanwhile, I have finally had sustained success at keeping that flange on Charlene for a good long time...sometimes we change it because it just seems like it's been too long since we last did. Her skin looks beautiful, but I will admit that at first, caring her stoma (she has a loop ostomy) was just brutal. We went through some really, really hard times. But with the help of everyone at Ostomyland (especially you, Jason), and stoma care nurses here and there we finally figured it out. I was so surprised when the surgeon admitted three months after her surgery that most people only suffer through taking care of a loop ostomy because it's usually a temporary situation and they know it. UGH. So, to all those moms out there struggling to keep that flange on their kids, all I can say is keep asking for help...and eventually someone will suggest just the right thing for you. It WILL happen! Take care everyone...and pray that the Tysabri works!! Janet