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  1. 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
  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. Hello All,   Im new to site as well as 3 months new to the colostomy environment.   I just started irrigating about ten days ago, its total freedom from the colostomy bag, Im looking for advice from others who may be irrigating and can share some tips on how to improve this further.    If by chance there is a forum already on this subject please let me know, I looked and didn't find any.   Thank you   Tony
  4. This is my first time on here, infact on any forum! I had elective keyhole surgery last Sep to have a bowel resecection due to aggressive diverticular , I am only 40 and was 36 when diagnosed. Unfortunatly the resection split and i was rushed to theatre to have an emergency Hartmans procedure leaving me with my worst fear a colostomy, 1 week late i was rushed back to theatre due to having the start of septicemia, this left me with an open wound along side a colostomy. so after nearly 1 month in hospital i returned home, distarught , overwhemed and in pain. over the next 6 months I battled with my emotions and health but knew there was light as this could be reversed. I began to sing with mand again, choreographed a musical ( which i also have a lead role in) and get myself a new job/career all ready to start after my reversal. That was 11 days ago...guess what, it didnt go to plan and i was left with an Ileostomy, something else to try and get my head around and face. i know its early days but i feel like this time is so much harder as my faith is depleating and even though they say this is also temporary, whats next? I am still determined to start my new job as soon as i am well but i have had to drop out of the musical ,a part i have wanted to play for a long time but it i just a part ( so i keep telling myself). god knows when ill be singing again, it takes all my energy to get showered and dressed! My main anxieties are around the noise, they seem worse then the colostomy and i know its too early to tell but i would never of taken on a job like this if i had know id have a 'shit bag ' still! I will be supporting young people one to one.the output is so different i had never emptyied a bag before always just changed, the output is so much? will this calm down? i have a great boyfriend but he doesnt cope well with the emotional side of things and i have grea t friends but i guess right now i am looking for someone who has experienced a journey like mine or am i simple just so unlucky!!
  5. Bleeding from rectum

    Hello, I am new to this site and I have a question about rectal bleeding with a colostomy. In November of 2011, I had surgery and had to have a colostomy. I have been doing fairly well but I have a problem with rectal bleeding off and on for about the last 4 months. This is bothering me and I wonder if anyone else has had this problem? I am waiting for a call back from my doctor, but I am wondering if I just haven't healed yet from surgery because of radiation damage or if there might be some other problem and this worries me! If anyone has had radiation and has had a colostomy with rectal bleeding, could you give me some ideas as to what to do? Waiting for my doctor to call. Thank YOU!
  6. Thank God It's Cancer!

    Thank God, It’s Cancer! Last March I started having digestive problems. At first I thought it was lactose intolerance. Tried Lactaid...didn't do a thing for me. I don't have medical insurance, so I started looking online to see if I could figure out my symptoms and pretty much decided I had irritable bowel syndrome. I began restricting my diet more and more...and more and more...and still more. By July I was miserable, hardly eating anything and had lost thirty pounds. My belly was distended and painful and I felt like crap. Little did I know! One day I felt so rotten, I thought, I just can't take this any more! I felt like I was going to die, and asked my sister to take me to the ER. After tests, the doctor came into my cubicle and said, "You have a large tumor in the lower part of your colon. You're going to need surgery. It will be tomorrow." My first thought was, "Cancer! Again!?" (This is my third time, though not colon before.) My second thought was, "Oh thank God it's not IBS!" Cancer you can take out; IBS is for a lifetime. So I had a colostomy. The ostomy nurse (we’ll call her Jane) was really nice, though kind of a nutty-crunchy type. She did a good job helping me learn how to change my bag and gave me a huge bag of supplies to take home, with many different types of ostomy bags to try out. Jane was a very nice person, but she did have one limitation – she had never had an ostomy herself. Jane told me ostomy bags would last between three and ten days. I asked, "How do you know when it's time to change your bag?" She didn't even hem and haw, she just kind of wandered off into a different topic. Generally, she was great, so I didn't worry about it; I assumed the wandering was just her usual distractibility. (I later wondered if she had deliberately avoided answering or if, because she worked only at the hospital, she didn't actually know.) Unfortunately I didn't ask again. On Monday I left the hospital and on Wednesday I learned my first lesson about taking care of my stoma: You know it's time to change your bag when it comes loose. Disaster! I was lying down when it happened, and the first thing I had to do was get up – no easy feat after major abdominal surgery! Especially with a pooping belly and a bag full of crap loose in my hands. I got to the nearest bathroom, which unfortunately is at one end of my long, ranch-style house, while the supplies I had brought home from the hospital were at the other. In the CARPETED living room! My second lesson was immediately apparent: Put your ostomy supplies in order and place them where you will use them. Don’t wait until you need them! By this time, I had crap all over my hands, my belly, my wound dressing, my clothes, the toilet, the floor, even my toes. I was home alone. (Mistake!) My stoma was still pooping. I was shaking, not just because I felt traumatized, but also because I still wasn't very strong. I kept saying to myself, “It’s just poop. It’s just poop!” But I still nearly passed out. I needed to sit down because my knees were weak. I wanted to lean on something. Both were impossible because I needed to continue to keep my belly over the toilet. Somehow I avoided both fainting and collapsing to the floor. Probably sheer determination, because that would have made an even bigger mess! Finally, the pooping stopped, and I learned a third lesson about taking care of my stoma: Cover your stoma, then clean yourself up before trying to clean up anything else. I held a baby wipe over the stoma, got myself and the room clean, got to my supplies and installed a new bag. Whew! Next problem: My incision still had packing in it that needed to be changed right away to avoid infection. It also needed new dressings. I tried to do it myself, but it was just too much for me. I called my dear sister-in-law and said, “Rachel, I have an emergency. Can you help me?” She replied, “I’ll be right over.” Fifteen minutes later she was there to repack my wound and put new dressings on. Next lesson: There are people who love me and want me to ask for their help. They will come through for me when I need them. That day has been by far the worst I have experienced since surgery. Since then I've learned to anticipate the need for a bag change. I put together an emergency kit to take with me when I’m out. I check the seal on my bag frequently and pay attention when I sense that itchy, tickly feeling that means it’s coming loose. While I've grown stronger, I've also given myself permission to rest when I need to and bought myself a recliner for the living room. That Wednesday wasn't the last disaster day, but they have become infrequent. The most recent was in October, when my sister and niece were here making preparations for my niece’s wedding. I was in my recliner when I felt that most special of all feelings, the stoma working and the poop pushing the bag away from my skin. I could also smell that delightful odor and I knew. Holding the bag to my belly, I eased up from the chair and cautiously waddled to the bathroom in the hall, yelling, “Crap! Crap! Crap!” My sister started laughing uncontrollably and said, “Literally!” Then she brought me fresh clothes and my ostomy box, and a towel so I could take a shower. It’s good to be loved.
  7. 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)
  8. 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!
  9. 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!
  10. 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
  11. 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
  12. I had a permanent colostomy two years ago as a result of colon cancer. Very glad to be alive, very glad for this site, very glad for the humour! I want to go for a massage, but have never laid on my stoma and am wondering if I can lay on my stomach for 30 to 60 minutes without causing problems. Thanks in advance.
  13. Yes, Tony we do have a load of fun, I can usually come away from the computer with a smile on my face, and that is excellent. You know, "Laughter is the best medicine." And especially for us, I don't know how much secret service business is attached to a urostomy, but my Goodness me, my Colostomy has to be the best kept secret since Adam was a boy. My family feel it is just simply not something that should be spoken of and certainly only behind closed doors. A couple of times I tried out the word Colostomy when i was buying clothes, you know, "No, I don't want hipster pants, I have a colostomy." Well that was the end of that, move to the next shop and keep my mouth shut tight. I would really love some awareness, starting with my family. My six grandchildren range from 20 down to 12, and only a couple of them know. I am not allowed to mention the C word. I hope you all have a great day, I am off out for lunch with a friend, (damn it is raining), as I know Mum being in hospital, has an excellent baby sitter. Love to all, xxxxxxx
  14. k kathy feel free to shift this lol as i didnt knoww here to post dilema is this.... we travel to spain next week and up to now i am unable to get any travel insurance for our lil hannah .We have never had this problem until now, the new factor is her ace. So uup until her ace she had a colostomy ....simple in travelinsurance terms.....and then between her colo and her ace she was just again that was simple. Both times we have letters from Hannahs surgeon regarding what surgery she has had in the case of an emergency . We have travelled once abroad since her ace but for some reason we didnt get any insurance:O Stupid thinkin back she was only 6 wks post op but we were only in Paris this time its a lil bit further away.. Now when i ring any insurance company i hit the same stumbling block ....even one company that "deals with stomas" "what sort of stoma does your daughter have an ileo , colo , or uro ?" my reply " neither its a continent stoma called an ACE or Mace" "oh madam we dont have that on our medical list " then they ask "how does it relate to a colo uro or ileo grrrrrrrrrr IT DOESNT !!!! then they ask what was the cause of her having it? "she was born with with that is imperforate anus.... "ok madam the nearest we can get to your daughter condition is imperforate anus/ birth defect" yes she HAD all of that but its corrected she has a stoma ...not a regular one but NONE of them recognise it and tbh imperforate anus isnt a correct term for hannahs condition it was just an added bonus thrown in lol so i thoought why dont i just take the one that said they would cover her including "imperforate anus..." but whats the point? there is nothing gonna happen to her anus lol if anythings gonna go wrong its going to be stoma related to her nice little ACE that no one in the travel insurance world seems to know about lol i can understand them not having cloaca in their little list that i forgive them for lmao Does any one have any magic suggestions as to what i do ? i rang hannahs surgeon who has gone off to ponder on it but his words were" u go no where without means of emergency travel back to the UK"grrrrr helpful not sorry this has turned into a rant lol but im in one of those "why did my kid have to be born with a random condition and end up with a random stoma !!!!!!!" moods. all suggestions what i should do will be gladly heard! oh and i have an e111 or whatever they are callled now that coveres emergency medical treatment .....the issue is of gettin home if needed ect
  15. The Usual Suspects

    Hi Guys, I think a few people where I work now have got suspicions I might have a colostomy.There was a dead giveaway when a disposal unit was placed in the toilet.I resolved to only tell my manager and boy has it been fun watching people trying to get me to admit to having one !! a few people have steered the conversation round to bowels and then onto bag wearers-I know what they're doing and I just keep a dead pan look on my face and say things like"wow-I bet thats hard".One woman was determined to get me to speak out and bluntly asked me did I have a health condition when she saw me taking a pill.I just smiled and said "no,I've got a headache."I know it's driving them nuts but it makes me laugh!! anyone else had a similar experience? L.
  16. On Monday I was at work and in the midst of doing a home visit and there was a problem. I had some very thick nasty poo. And a wafer that had been on for 11 days. I had a very pretty white shirt with little penquins and wreaths ! First I could smell it. Then I saw lovely shirt was turning brown........... So I told the new Mom's that I was meeting with that I had a colostomy and that I was having a problem at which point the one Mom said she had just checked her baby's diaper and saw it was clean and was wondering. So I excused myself and put my hand over the bag and prayed that poop did not fall out. It did not. But my hand was wet. I drove home which luckly was close. Cleaned up and went about the rest of my day. I was irritated that it got in the way of my very busy schedule. But I was not embarrased. I really can not explain this. Is there something wrong with me that I am not embarrased by this. Maybe that is part of why I am not in any hurry to get the reversal I am not an uncaring person but this thing really does not bother me................ Vickie West Virginia
  17. Hi everyone, My mum and I have just booked places on a tour of New Zealand next spring (Feb/Mar) and I have got a number of quotes for travel insurance, to include cover for my colostomy and various other health issues. Before I go ahead and buy, I wondered does anyone have a particular recommendation (or suggestions of who to avoid)? We want a single-trip policy for 3 weeks to cover all my health issues. (Mum is disgustingly healthy!) We do not live in the same household but do want to be on the same policy and we are both UK residents. From the policies I looked at on the web, there's not a lot of difference in the conditions, just in the amount they'll cough up... and the amount they'll charge me! Look forward to hearing your suggestions...
  18. I had a colostomy in 2002 due to cancer that was reversed in 2003. Unforunatley due to adhesions, a stricture and possible nerve damage the reversal left me incontinent. 5 weeks ago at my request I was given the colostomy back and the Dr told me it was now permanent. I have recovered well and am very happy. Living with a stoma is so much easier than living with incontinence. I have read on this site about loop colstomys and end colostomys and don't know what mine it. I pass no gas or anything at all from the rectum, but had no pain there after surgery either. What kind of colostomy is this?
  19. Was interested to know if anyone has experienced similar problems to myself with regard to travel insurance. Had op in Feb 04 for removal of rectal cancer and formation of colostomy. Thankfully the tumour was a Dukes Grade A and was removed by surgery with no follow up treatment required. Since that time I have travelled once a year to the US. When I am asked by the insurers whether I have an existing medical condition and inform them of the colostomy I am declined cover because it is as a result of cancer. Obviously I have to take up that cover should there be any other problems whilst away. I have tried other companies who provide cover to those undergoing treatment but the cost is ridiculous - it would be cheaper for me to buy a ticket and take my stoma nurse with me. Does anyone else experience similar problems?
  20. Hi all, I am very new to all this and would really appreciate the answers. My 3 year old has been suffering from UC for more than a year now. His flares seem to keep coming back. We are really looking at surgery as an option and wanted to find out from you guys. I have no idea what is the difference between ileostomy/Colostomy/J-pouch. What do you think they will perform on a 3 year old? Also are people who have had sugeries generally happy with it. Is it much better afterwards? can you eat anything. Regards, Roni (Son 3 UC, Hycort enemas, sulfa, seacure, iron, multi-vitamins)
  21. tanning with ostomy?

    ive had my colostomy a week and i have asked every nurse and doctor and no one seems to know. so i will ask on here...does anyone know if i can still go tanning? maybe if i put one of the caps on it..i dont know. someone please let me know
  22. Ostomy Information

    This link will take you to the list of chapters, which cover the following topics: What Is A Colostomy? What Does a Stoma Look Like? The Stoma Nurse At The Hospital About The Pouches Prescriptions The Stoma Routine Problems With Diet Travel Sports and Swimming Returning to School or Work Relationships Sex and Pregnancy Colostomy Irrigation Food and Drink Effects Chart Leakage and other Skin Problems